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Supplemental literacy instruction for students with Down syndrome: a program evaluation

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Supplemental literacy instruction for students with Down syndrome: a program evaluation

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Content Running head: SUPPLEMENTAL LITERACY INSTRUCTION 1

SUPPLEMENTAL LITERACY INSTRUCTION FOR STUDENTS WITH
DOWN SYNDROME: A PROGRAM EVALUATION

by

Lisa Michelle Regan

_____________________________________________________________________

A Dissertation Presented to the
FACULTY OF THE USC ROSSIER SCHOOL OF EDUCATION
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF EDUCATION

May 2013

Copyright 2013 Lisa Michelle Regan

SUPPLEMENTAL LITERACY INSTRUCTION

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DEDICATION
I dedicate this study to four people who believed in me and inspired me more than most
people can even imagine. Although three of these people weren’t here with me in person, they
most definitely were in spirit. My grandmother, Shirley Loth Van Court, taught me to believe in
every child’s potential and to see the goodness in everyone. Though she could never know how
much she inspired me when leukemia took her from us 35 years ago, she embodied the phrase
“no child left behind.”
Judith Manning Grayson — my lifelong teacher, mentor, and guardian angel (to me, my
family, and countless future teachers from the USC Rossier School of Education) — shared her
love of teaching with me 30 years ago as we picked string beans in her garden and again 20 years
ago while I was an undergraduate. I have never looked back. Thank you for seeing something in
me that I was not sure I saw for myself.
To my mother, Penelope Van Court Heimlich, I will never stop being inspired by your
love of life, learning, and striving for greatness. Breast cancer did not beat you five years ago, it
let you watch me finish my education from a final, pain-free, contented place. I missed your
positive notes of encouragement these past three years, but I know you were cheering me on
from your pink ribbon of clouds in the sky.
And to Craig DeRoss, my partner in life, I dedicate this study to you for being my rock
and supporting me through this entire journey. I simply could not have finished this paper
without your love, your unending and superb home cooking and home maintenance, or your
tolerance of my incessant typing (while watching the Lakers, no less). This paper has your name
on it as much as it has mine. Je t’aime, mon amour.
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ACKNOWLEDGEMENTS
I would like to thank the dedicated staff and tutors of the center where I conducted my
research for this study. Your generosity and openness allowed me to learn and grow while I was
a fly on the wall of your classrooms. I would like to thank my committee chair, Dr. Eugenia
Mora-Flores, for a very gentle wit, tenor, and proverbial “red pen” while guiding me through the
drafting process. As literacy educators, we may teach the value of revision, but that doesn’t
mean we have to like it. Also thanks to Drs. Kimberly Hirabayashi and Margo Pensavalle for
their expert guidance and for helping me see areas that I had missed. I would also like to thank
some of the faculty (current, former, and emeritus) of the USC Rossier School of Education who
believed in me through all of my degree programs, particularly Drs. Sandra Kaplan, Karen
Symms Gallagher, Stephen Krashen, David Marsh, and Jamy Stillman. To my Phi Delta Kappa
mentors, Drs. Marian Fukuda, William Bushaw, Bill Wright, and Linda Weber, thank you for the
amazing, expert, and caring advice over the past decade. And to Priscilla Castillo Almaguer and
Juanita Naranjo, you know all the things you did to keep me going. Muchas gracias, amigas.
And finally, I need to thank the teachers, colleagues, and staff at all the Los Angeles
Unified School District schools and offices where I have had the pleasure of working during this
entire doctoral program: Elizabeth Learning Center, George Washington Preparatory Performing
Arts Magnet High School, Phineas Banning High School, and the Division of Special Education.
Thank you for bearing with me through all the ups and downs of this roller coaster ride. I am in
awe of your extraordinary work with students, families, and communities, and I thank you for
being the endless source of inspiration for all the “aha moments.”
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TABLE OF CONTENTS
Dedication 2
Acknowledgements 3
List of Tables 5
Abstract 6
Chapter 1: Introduction to the Study 7
Chapter 2: Review of the Literature 22
Chapter 3: Research Methodology 56
Chapter 4: Findings 67
Chapter 5: Conclusions and Recommendations 113
References 131
Appendices 143
Appendix A: Informed Consent Letter 143
Appendix B: Interview Protocol for Executive Staff 144
Appendix C: Tutor Interview Protocol 147
Appendix D: Observation Protocol 149
Appendix E: Sample Reading and Writing Activity 152
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LIST OF TABLES
Table 1: Summary of Effective Literacy Practices 40
Table 2: Summary of Effective Tutoring and Intervention Practices 51
Table 3: Tutors Observed During this Study 62
Table 4: Timeline for Data Collection 64
Table 5: Guiding Principles of the Let’s Read Now Program 76
Table 6: Summary of Curricular and Instructional Elements of the LRN Tutoring 104
Program
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ABSTRACT
The study utilizes an inductive, qualitative approach to program evaluation to understand the
nature of an afterschool literacy tutoring program for students with Down syndrome. Two
research questions guide this study: (a) What are the curricular and instructional elements of the
Let’s Read Now (LRN) literacy tutoring program for students with significant learning needs
resulting from a diagnosis of Down syndrome? and (b) How does the LRN program align its
practices to the research-based approaches to core and supplemental literacy instruction? The
methodology utilized in this study is a formative, program evaluation design based on a nested
case study approach. Findings reveal that training and ongoing support for tutors centers on the
behavioral characteristics of students with Down syndrome as opposed to instructional practices
that promote literacy development. For students with limited reading skills, the program utilizes
a sight word approach for teaching reading, which is based on research that has largely been
refuted by more recent studies indicating that students with DS can learn to read with direct
instruction in both phonics and comprehension blended with explicit attention to auditory and/or
visual memory. The findings provide insight into what pertinent changes could take place within
this tutoring program to situate affective and behavioral aspects of learning within a larger,
research-based framework that promotes students’ literacy growth. In addition, this study
provides avenues for future research in the areas of literacy curriculum, instructional practices,
and assessments for students with significant learning needs arising from developmental
disorders, and it informs the types of practices that could prove effective within school programs
as well as tutoring or intervention settings for students with learning, cognitive, or intellectual
disabilities in order to improve outcomes for this population.
Key words: Down syndrome, tutoring, literacy, instruction
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CHAPTER 1
INTRODUCTION TO THE STUDY
Down syndrome (DS) is the most prevalent cause of intellectual or cognitive impairment
and disability associated with a genetic anomaly (Silverman, 2007). It is believed to occur in 1
out of every 800 live births, though mothers who give birth at advanced ages are at increased risk
(Chen, 2012). In more than 90 percent of cases, DS is caused by trisomy 21, an extra
chromosome at the 21
st
place on the genetic strand, and is the leading cause of specific birth
defects and related medical conditions in the United States (Mayo Foundation for Medical
Education and Research, 2011). Children with DS typically develop at a chronological rate that
is approximately 50 percent slower than that of normally developing children, and this delayed
development often affects physical growth and development as well as the cognitive skills
necessary for learning (Fidler, Most, & Guiberson, 2005; National Dissemination Center for
Children with Disabilities [NICHHY], 2010). Once students with DS reach school age, most are
found to exhibit mild, moderate, severe, or profound characteristics of mental retardation (Chen,
2012), a term that has been proposed to be changed by the American Psychiatric Association to
the intellectual disability disorder nomenclature for its fifth revision to the Diagnostic and
Statistical Manual of Mental Disorders, scheduled for release in 2013 (American Psychiatric
Association, 2010).
Research indicates that individuals with Down syndrome experience a variety of
phenotypes, the physical, behavioral, and learning characteristics that differentiate them from
their nondisabled peers, that are similar to other children with moderate to severe intellectual
disabilities (Encyclopedia of Special Education, 2006). In particular, many individuals with DS
experience significant vision and hearing impairments that affect development in speech
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production, listening comprehension, and reading acquisition (Chen, 2012; Fidler & Nadel,
2007). Yet since the early 2000s, legal requirements have required schools to focus greater
attention on helping students with intellectual disabilities learn the same curriculum as their
nondisabled peers, though pedagogical practices vary widely among and between general
education and special education programs (Laws, Buckley, Bird, MacDonald, & Broadley,
1995). Hence, new research on effective learning programs for students with moderate to severe
intellectual or cognitive disabilities has been centered on curriculum, pedagogy, and instructional
strategies more typically used with mainstream populations (Bellamy et al., 2002).
Early research on the domains of reading development among individuals with Down
syndrome focused on non-systematic elements of reading that accommodated for students’
developmental delays and/or their deficits in auditory and visual memory (Browder & Lalli,
1992; Browder & Xin, 1998; Cossu, Rossini, & Marshall, 1993; Singh & Singh, 1986;
Stanovich, 1985). Before passage of the No Child Left Behind Act in 2001, researchers sought
to define what is known about deficits in phonological awareness and memory among
individuals with DS and to link that data to pedagogical approaches such as sight word reading
strategies (Cossu, Rossini, & Marshall, 1993). Since NCLB and the corresponding Reading First
legislation do not advocate using sight word reading approaches, there has been a sustained focus
in the research community on disproving earlier research that denied a causal link between
phonological awareness and reading achievement and identifying the attributes of phonological
awareness that represent both strengths and weaknesses for individuals with DS (Al Otaiba &
Hosp, 2004). Additional research is emerging that intends to identify promising practices that
might help students with DS use both phonological and logographical skills to read with more
fluency and comprehension (Boudreau, 2002; Cardoso-Martins & Frith, 2001).
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Research on supplemental literacy instruction as part of a literacy tutoring program for
either disabled or nondisabled populations indicates that most tutoring programs have
demonstrated success with remediating delayed reading skills (Osborn, Freeman, Burley,
Wilson, Jones, & Rychener, 2007; Shanahan, 1998; Worthy, Prater, & Pennington, 2003).
Programs that are effective embed three criteria:
1. Knowledgeable, motivated, and caring tutors who build rapport with students in ways
that help students learn and retain reading/language arts skills (Shanahan, 1998;
Worthy, Prater, & Pennington, 2003).
2. Curricula that teach skills in separated, simulated, and integrated ways to bridge
academic learning to real-world applications (Langer, 2001; Langer, Close, Angelis,
& Preller, 2000).
3. Instructional strategies that are designed to increase accuracy, comprehension, and
independence (Askew, Fountas, Lyons, Pinnell, & Schmitt, 1998; Elbaum, Vaughn,
Hughes, & Moody, 2000).
Because much of the research identifies what works in literacy tutoring programs without
much insight into why it works, this study will capitalize on the published body of research by
identifying areas in which a literacy tutoring program for students with DS can implement more
of what research has established as effective literacy-based pedagogy into the current program.
Background of the Problem
The Down Syndrome Learning Center
1
is a nonprofit 501(c)(3) organization founded in
2009 whose mission is to support individuals with Down syndrome (DS), their families, and

1
Pseudonyms will be used throughout this study for the organization and its programs, executive staff, tutors, and
students.
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communities so that those individuals may reach their potential and become fully included
members of society. Founded in 2008, the center is headed by a woman with more than 25 years
of experience as a credentialed special education teacher. The center’s founder, who also has an
adolescent daughter with DS, serves as its executive director. She founded the organization
because she said there were no nonprofit centers focused on both the academic and social-
emotional needs of children with DS and their families in Los Angeles County, California. The
executive staff includes the executive director and center’s director of programs and the primary
contact for this study, as she was the staff member present at all tutoring meetings, debriefing
meetings, and the initial training session. To house its seminars and programs, Down Syndrome
Learning Center’s board of directors leases office and classroom space on the grounds of a
church in the San Gabriel Valley area of Los Angeles County. In addition to its many advocacy,
outreach, and fundraising projects aimed at increasing awareness of and educating the public
about the need to support individuals with DS, the organization also provides a series of
educational programs designed to provide children with DS the tools they need to access school
programs and improve their learning outcomes.
The center’s Let’s Read Now (LRN) program, the focus of this study, is a once weekly,
afterschool literacy tutoring program for school-age students with Down syndrome. Since the
program is individualized to each student’s current literacy levels, the program serves a wide
range of students: from those who cannot read a single word to those who can read at a level
expected for their chronological age and/or grade. Parents learn about the LRN program through
previous involvement in programs at the Down Syndrome Learning Center, the center’s website,
other parents and families, medical practitioners, and/or education professionals. Although
parents are often able to obtain funding for supplemental educational programs through their
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medical insurance policies, state-run regional resource centers for people with developmental
disabilities, or public school districts, this is not the case at the Down Syndrome Learning
Center. Only in its third year of existence, the center has not obtained any of the requisite
certifications to be qualified as a “nonpublic agency” or “supplemental educational services
provider” under federal and state regulations for agencies that provide services to people with
disabilities and/or school-age children. For the Let’s Read Now program that is the focus of this
study, parents pay a fee of $200.00 that is heavily subsidized by fundraising efforts undertaken
by the center’s staff and member families. Parents must pay this fee for each 10-week session in
which their child is enrolled in the LRN program.
Through its programs and outreach activities, Down Syndrome Learning Center aspires
to graduate an entire generation of capable learners with DS who will, as a result, be more
independent and confident in their daily lives. The sequence of learning programs offered at
Down Syndrome Learning Center starts with preschool age children and follows them up to high
school. The first level of programming, the Infant & Toddlers Program, allows babies and
toddlers up to the age of 3 to play and socialize with one another. The program’s director of
programs characterizes the Infant & Toddlers Program as a pressure-free environment where
young children with DS can experience play with other children and begin to understand
themselves as social beings. The second level, Reading Readiness, is designed to supplement
traditional education by focusing on parents as first-teachers for their children. Depending on a
child’s readiness, he/she may begin Reading Readiness as early as age 2 with an expected
“graduation” at age 6 or 7, depending on skill development.
The last level of educational programming and the focus of this study is the Let’s Read
Now (LRN) program. LRN is an after-school, once-weekly literacy tutoring program for school-
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age children. The LRN program meets on Wednesdays and Thursdays from 3:00-4:00 p.m., with
the younger students in grades 1 through 5 meeting on Thursdays, and pre-adolescent and
adolescent students in grades 6 and up meeting on Wednesdays. Students in LRN are
encouraged to attend weekly, 45-minute tutoring meetings for a total of 10 weeks. In most cases,
the sessions are one tutor and one student, or tutee. However, depending on the needs of the
student or the level of expertise of the tutor, the LRN staff may place a student with more than
one tutor for a 45-minute session or a series of sessions. If the student returns after the 10-week
session, he/she will likely be assigned a different tutor largely because Down Syndrome
Learning Center has difficulty retaining tutors for successive sessions, as the tutors are usually
college or graduate students.
The Let’s Read Now (LRN) program is described in its promotional materials as a one-
on-one literacy tutoring program focusing on the development of reading and writing skills. The
LRN program is designed to follow the Reading Readiness program and is considered by
program staff to be one more step on the education pathway of children with DS who need
additional intervention and/or enrichment. The program requires active participation by both the
student and his/her parents to be successful. Skills are presented and taught in45-minute-long
weekly tutoring sessions, and then tutors meet with parents for 15 minutes at the end of each
session, where work is given to parents with the expectation that there will be daily reading
practice at home following each tutoring meeting.
The Down Syndrome Learning Center recruits tutors for the LRN program from local
universities, seeking students in undergraduate and graduate education programs studying to
receive teaching credentials in either elementary multiple subjects or special education.
According to the center’s executive staff, the curricula, instructional strategies, and materials
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used by tutors varies according to individual children’s needs; sometimes tutors bring their own
materials and sometimes they use the materials housed at the Down Syndrome Learning Center
offices. However, the methods used to select curricula, strategies, and materials varied greatly
from one tutor to the next, and the Down Syndrome Learning Center’s staff acknowledged that
fact as a weakness in its current structure. Although the program includes in its vision a desire to
produce a “generation of capable readers” among students with Down syndrome, at the present
time the program does not use any form of assessment to identify students’ baseline literacy
skills or skill attainment before, during, or after each 10-week tutoring cycle.
The program’s executive staff acknowledged that the efficacy of the LRN program varies
according to many factors. They acknowledged that many of their program staff do not have
sufficient knowledge and understanding of the empirical research on literacy development for
students with cognitive or intellectual disabilities, especially knowledge of recent research that
has focused on utilizing the five causal factors identified by the National Reading Panel that
contribute most to reading achievement when embedded in reading curricula and instruction:
phonological awareness, phonics, fluency, vocabulary, and reading comprehension (National
Institute of Child Health and Human Development, 2000). In spite of this problem, the staff
stated that they intend for the program and its tutors to utilize more research-based curricula and
instructional strategies so they can tie their efforts to their students’ reading improvement.
Statement of the Problem
The problem examined in this study was the limited research on literacy development and
effective practices for supplemental literacy instruction for students with Down syndrome and
other moderate-to-severe learning, cognitive, and/or intellectual disabilities that can be utilized in
either classroom or intervention settings. Although the recent literature on teaching students
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with DS to read indicates that approaches more commonly used with nondisabled students or
students with mild-to-moderate learning disabilities may be effective for students with more
significant cognitive impairments, the literature has also documented that many children with
intellectual disabilities do not reach the mental age necessary for learning to read until early
adolescence, a time when most of these students are no longer receiving fundamental reading
instruction (Byrne, MacDonald, & Buckley, 2002). To address this problem, this study focused
attention on the Wednesday afternoon LRN tutoring program for adolescent students in middle
and high school (age 11 and older), and the practices used by tutors who work with them. The
methodology used in this study illuminated the ways in which the tutors support literacy skill
development for their pre-adolescent and adolescent students. Following that analysis, this study
draws conclusions about the current state of the LRN program by comparing it to the research on
literacy development and tutoring programs.
Purpose of the Study
The purpose of this study was to describe the elements of an afterschool literacy tutoring
program for students with Down syndrome and to qualitatively identify and describe the gaps
between its current practices and the recommended, research-based approaches to teaching
reading and literacy skills to this population and students with similar learning profiles. The
tutoring program to be studied is the Let’s Read Now (LRN) program, one of several outreach
programs of Down Syndrome Learning Center, a Los Angeles-area nonprofit organization
dedicated to supporting families and their children with DS. The investigation will comprise
triangulated analyses of data from three main sources: observations of the tutoring program
including its trainings and post-tutoring parent meetings and debriefing meetings, interviews
with tutors and other program staff, and content analyses of program documents. Following the
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description and analysis of the program, this study will outline and describe recommendations to
provide a basis for Down Syndrome Learning Center to improve outcomes for students
participating in the LRN program.
Importance of the Study
This study extends the research on literacy instruction, supplemental literacy instruction,
and intervention/tutoring programs for students with moderate-to-severe learning, cognitive,
and/or intellectual disabilities by investigating the elements of Down Syndrome Learning
Center’s literacy tutoring program for students in early adolescence. As a result, this study can
produce recommendations for the type(s) of core and supplemental literacy instruction that
supports students with disabilities with gaining independence with reading, writing, listening,
speaking, and language skills. Moreover, examining these research questions will provide
insight into what pertinent changes need to take place both in current K-12 day programs and
intervention settings for students with disabilities.
There exists a large body of research addressing both classroom-based and intervention
settings for teaching reading to nondisabled students and students with mild-to-moderate
learning disabilities. However, research on effective pedagogies and programs for students with
moderate-to-severe learning, cognitive, and intellectual disabilities is lacking with respect to the
basic elements of reading — phonological awareness, phonics, fluency, vocabulary, and reading
comprehension — and studies conducted in the United States are particularly limited. Although
children with other genetic, congenital, and developmental disorders (e.g., autism spectrum
disorder, aphasia) may exhibit similar language and learning delays or learning disabilities as
children with DS, the phenotype specific to the majority of children with DS presents unique
teaching and learning challenges that have given rise to specific pedagogies that are explored in
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depth in this study (Buckley & Bird, 1993, 2000; Byrne, MacDonald, & Buckley, 2002). In
addition, one of the researchers that is most often cited by executive staff at the Down Syndrome
Learning Center as the basis for their instructional philosophy and as an informal consultant, Sue
Buckley, emeritus professor of developmental disability and psychology at the University of
Portsmouth in the United Kingdom, is a primary author of several of the articles cited in this
study. Therefore, this investigation addresses a pertinent piece of this gap in knowledge in the
research community and identifies areas for future quantitative, qualitative, and longitudinal
research. Given the importance of this study, two research questions were formulated to guide
the inquiry in this investigation.
Research Questions
The two research questions for this study define the scope of the examination.
1. What are the curricular and instructional elements of the Let’s Read Now (LRN)
literacy tutoring program for students with significant learning needs resulting from a
diagnosis of Down syndrome?
2. How does the LRN program align its practices to the research-based approaches to
core and supplemental literacy instruction?
Methodology
This study is a qualitative analysis using a formative, problem solving approach to
conducting a program evaluation. The study sought to identify, describe, and explain the nature
of the gap between the practices Down Syndrome Learning Center currently employs in its LRN
literacy tutoring program and the elements of effective literacy tutoring identified in the research
for both disabled and nondisabled students. This study also sheds light on the extent to which the
LRN literacy program for students with DS pairs with the research on literacy development
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among students with DS and other cognitive and intellectual disabilities. This study combined
traditional elements of a formative evaluation case study with a protocol that analyzes gaps in
implementation to inform recommendations for improvement. According to Patton (2002), the
qualitative evaluation aspects of the study are in the form of a nested case study in that it
represents a process of gathering and analyzing “comprehensive, systematic, and in-depth
information” (Patton, 2002, p. 447) about a series of cases that form the whole of the LRN
program. The findings, outlined in Chapter 4, identify the patterns and themes that emerged
from a content analysis of observations of the tutoring meetings, trainings, and debriefing
meetings, interviews with tutors and program staff, and a close reading of various program
documents.
Assumptions
The assumptions for this study originated from multiple sources. First, the researcher’s
experiences with special education programs for students with learning, cognitive, and
intellectual disabilities guided the research questions and the development of the methodology.
Second, the researcher’s experiences with teaching literacy and teaching students with
disabilities to read also impacted the direction of the study. And third, the researcher’s
knowledge of and familiarity with the current practices in K-12 settings for students with
disabilities further shaped this study. For purposes of this study, assumptions included the
following:
• tutors use a combination of methodologies, materials, and resources gleaned from
experience, program staff, and university faculty in their credential programs;
• tutors incorporate sight-word approaches in their lessons;
• most lessons are not sequential and do not come from a single reading program;
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• tutors rely on traditional literacy methodologies as opposed to those that are more
constructivist or sociocultural in nature;
• tutors teach lessons that are more general in nature and are designed without respect
to students’ literacy needs or disabilities;
• tutors are still developing in their knowledge of literacy and reading acquisition and
in their use of research-based pedagogy that supports reading development;
• tutors attempt to provide a balanced literacy approach by teaching orthographic skills
(spelling), writing, and language use during tutoring sessions to match the aims of
teaching reading and language arts emphasized in most credential programs in
California.
Definition of Terms
Alphabetic skills: Knowledge and use of individual graphemes (letters and letter
combinations) and phonemes (sounds). Also known as letter-sound correspondences (Frith,
1985).
Classical conditioning: A form of learning, stemming from the behaviorist tradition in
psychology, in which the conditioned stimulus signals the occurrence of a second stimulus, the
unconditioned stimulus, or response (Gredler, 2009).
Down syndrome: Down syndrome is a condition caused by a chromosomal abnormality,
the trisomy of chromosome 21, resulting in changes to the brain and physical development.
Individuals with Down syndrome demonstrate wide variation in mental abilities, behavior, and
development (National Dissemination Center for Children with Disabilities, 2010).
Intellectual disability: disorders that include both a current cognitive (intellectual) deficit
and a deficit in adaptive functioning with onset during the developmental period, characterized
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by deficits in general mental abilities such as reasoning, problem-solving, planning, abstract
thinking, judgment, academic learning, and learning from experience (American Psychiatric
Association [APA], 2010). Prior to 2010, the APA used the term mental retardation instead of
intellectual disability (APA, 2000).
Learning disability: a current presentation of persistent difficulties in the acquisition of
reading, writing, arithmetic, or mathematical reasoning skills during the formal years of
schooling (i.e., during the developmental period) that are well below the average range for the
individual’s age or intelligence, cultural group or language group, gender, or level of education,
as indicated by scores on individually administered, standardized, and culturally and
linguistically appropriate tests of academic achievement in reading, writing, or mathematics.
The term used by the medical community is specific learning disability/disorder (American
Psychiatric Association, 2010).
Logographic skills: the instant recognition of familiar words, where graphic (letter)
features of the word act as important cues to the reader. Also referred to as sight word reading
(Frith, 1985).
Orthographic skills: analysis of words into their letter strings, with or without
phonological conversion; considered a building block of spelling development (Frith, 1985).
Phenotype: the physical, mental, and behavioral characteristics of a person; can also be
used to establish a group of similar or identical characteristics of a group of people (Chen, 2012).
Phonological awareness: explicit awareness of individual phonemes (sounds),
phonological strings, syllabic segments, phonemic segments, and knowledge of phonetic
features; considered a building block of reading acquisition for most students (Morais, 1991).
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Reading fluency: the ability to read text quickly, accurately, and with good understanding
(National Institute of Child Health and Human Development, 2000).
Reading comprehension: an active process by which the reader engages in intentional
thinking to construct meaning through text and reader interactions (National Institute of Child
Health and Human Development, 2000).
Sight word recognition approach: An element of reading instruction where the reader can
recognize a word through memorization and/or without regard to decoding skills (Aaron, Joshi,
Ayotollah, Ellsberry, Henderson, & Lindsey, 1999).
Organization of the Study
Chapter 1 of the study presents the introduction to the Down Syndrome Learning Center
organization and the Let’s Read Now (LRN) program, the background of the problem of literacy
development in individuals with Down syndrome (DS), the statement of the problem, the
purpose of the study, the research questions that guided the study, the importance of the study,
and a brief description of the methodology with the assumptions, limitations, and the definitions
of key terminology.
Chapter 2 is a review of relevant literature that guided the study. It addresses the
following topics: the epidemiology and development of individuals with Down syndrome, the
debate over sight word approaches to teaching reading, phonological awareness approaches for
students with Down syndrome, and literacy tutoring approaches in intervention settings.
Chapter 3 presents the methodology used in the study, including the research design, the
population and sample, instrumentation, the procedures for data collection, and ethical
considerations.
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Chapter 4 presents the analysis of the data collected in the study, and Chapter 5 discusses
the results through the lens of drawing conclusions and making recommendations for possible
changes to the Down Syndrome Learning Center’s Let’s Read Now program.
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CHAPTER 2
REVIEW OF THE LITERATURE
Children with Down syndrome (DS) have delayed language development and
developmental and learning problems such as delays in reading (Fidler & Nadel, 2007).
Although children with other genetic, congenital, and developmental disorders (e.g., autism
spectrum disorder, aphasia) may exhibit similar language and learning delays or learning
disabilities as children with DS, the phenotype specific to the majority of children with DS
presents unique teaching and learning challenges that have given rise to specific pedagogies that
are explored in depth in this study (Buckley & Bird, 1993, 2000; Byrne, MacDonald, & Buckley,
2002). Students with DS are most often educated in special day program settings with specific
attention to literacy and numeracy development in the early grades (Buckley & Bird, 2000).
This “least restrictive environment” is designed to ensure that students with moderate-to-severe
intellectual disabilities are provided with standards-based instruction under the guidance of both
general and special education teachers who possess strong command of the curriculum,
instructional strategies, and assessment methods necessary for students with disabilities to meet
those expectations (Bellamy et al., 2002). Yet most children with DS do not attain an equivalent
mental age necessary for reading acquisition as nondisabled children until they reach a
chronological age of between 11 and 14, or approximately twice the age as their normally
developing peers (Fidler, Most, & Guiberson, 2005; Mayo Foundation for Medical Education
and Research, 2011).
Research to date suggests a distinct profile of areas of strength and weakness within
literacy skills among students with Down syndrome. This profile includes stronger word
identification skills, poorer word attack skills, and poorer comprehension (Cupples & Iacono,
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2000; Kay-Raining Bird, Cleave, & McConnell, 2000). Yet, there is disagreement in the
research community on the extent to which sight word recognition strategies should be utilized
with students with DS who are still developing early literacy skills (Al Otaiba & Hosp, 2004).
This disagreement in the research community appears to have had a direct impact on the wide
variety of approaches present in both classroom and intervention settings for students with DS.
This review of the literature will explore the following areas: (1) epidemiology and development
of individuals with DS; (2) the debate over sight word approaches in teaching students with DS
to read; (3) phonological awareness approaches with students with DS; and (4) literacy tutoring
approaches in intervention settings.
This review of the literature will suggest that students with Down syndrome would most
likely benefit from sustained and intensive reading instruction both in the classroom and in
tutoring or intervention settings. This instruction should continue into adolescence, with
significant attention paid to both separated and integrated approaches to teaching reading using
phonological awareness, phonics, comprehension, fluency, and sight word approaches, as well as
consistent and meaningful integration other literacy domains such as speaking, spelling, and
writing. Furthermore, this review will suggest that teachers and tutors who receive frequent
feedback and monitoring of their instruction from both objective sources (e.g., formative and
summative data) and from supervisors (e.g., evaluation and mentoring) are most likely to provide
effective instruction that improves reading outcomes for their students.
Epidemiology and Development of Individuals with Down Syndrome
Down syndrome (DS) is the most prevalent cause of intellectual impairment and
disability associated with a genetic anomaly (Silverman, 2007). In more than 90 percent of
cases, Down syndrome is caused by trisomy 21 and is the leading cause of specific birth defects
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and related medical conditions (Mayo Foundation for Medical Education and Research, 2011).
It occurs in approximately 1 in 800 live births, with incidence increasing with maternal age
(Chen, 2012; Mayo Foundation, 2011; National Association for Down Syndrome [NADS], 2003;
Silverman, 2007; Wishart 1993). Over 96 percent of all cases of Down syndrome are a result of
trisomy 21, where a person has three copies of chromosome 21 instead of the usual two copies in
all of his or her cells. This form of DS is caused by abnormal cell division during the
development of the sperm cell or the egg cell; however, debate exists in the research over
whether the condition is inherited or is a developmental genetic deformity (Chen, 2012; Wishart,
1993). More rare forms of DS are the result of other deformities of chromosome 21, such as
translocation or mosaicism, yet these abnormalities produce similar delays in motor
development, cognition, and language. Individuals with DS are usually included in the
moderate-to-severe end of the spectrum of intellectual/cognitive disabilities, and the condition
manifests in lifelong cognitive and language impairment (formerly known as mental retardation),
developmental delays, and other learning and adaptive problems (Sherman, Allen, Bean, &
Freeman, 2007).
Down syndrome is usually identified at birth or within the first few months following
birth. Initially the diagnosis is based on physical characteristics that are commonly seen in
babies with DS, including low muscle tone, a single crease across the palm of the hand, a slightly
flattened facial profile, and an upward slant to the eyes (NADS, 2003). The diagnosis must be
confirmed by a chromosomal study, or karyotype, which provides a visual characterization of the
chromosomes by their size, number, and shape (Chen, 2012; NADS, 2003). Infants with DS
may be of average size at birth, but typically they grow more slowly and remain shorter than
other children of similar age (National Dissemination Center for Children with Disabilities
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[NICHHY], 2010). Approximately 50 percent of infants with DS are born with heart defects
ranging from those that are minor and require medication to those that are more severe and
require surgical repair (Freeman et al., 1998). Additionally, developmental milestones such as
sitting, crawling, talking, and reading generally occur at about twice the age of children without
impairment (Mayo Foundation for Medical Education and Research, 2011).
Down syndrome affects both physical and cognitive development and produces a
characteristic phenotype of physical, mental, and behavioral characteristics (Encyclopedia of
Special Education, 2006). Although affected individuals vary considerably with respect to
severity of specific impairments, students with intellectual and developmental disabilities, such
as those with DS, typically have IQs that fall within the mild to moderate range of intellectual
disability, causing limits on cognitive abilities and adaptive behaviors such as the conceptual,
social, and practical skills people use to function in everyday lives (NICHHD, 2011). These
individuals also have delayed language development and slower than typical motor development
(Chen, 2012), and they experience developmental and learning problems such as a reading
acquisition range from moderate to serious (Fidler & Nadel, 2007). Besides having a distinct
physical appearance, children with DS frequently have specific health-related problems that
affect reading development. Visual problems such as crossed eyes and far- or nearsightedness
are common in individuals with DS and are associated with delays in reading and dyslexia
(Simons, 1993), as are mild to moderate hearing loss and speech difficulty (Briscoe, Bishop, &
Frazier Norbury, 2001). In the area of oral-motor structure and function, young children with DS
typically have a high and narrow arched palate and relatively small mouth and jaw area,
contributing to the difficulty they have in producing precise speech sounds (Abbeduto, Warren,
& Conners, 2007). For children with DS to make substantial progress in reading, Wishart (1993)
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posits that intervention must occur on two fronts: remediate health problems linked to the
condition such as impairments in physical structures, vision, and hearing, and ensure that
appropriate curricula and instructional pedagogies are available to individuals with DS
throughout their lifespans. Wishart’s recommendations also include a need for a renewed focus
on pedagogies for nondisabled students that can also be implemented for students with
intellectual/cognitive disabilities. Recent research on effective literacy practices for students
with DS have drawn upon Wishart’s original conclusions and have extended the idea of an
integrated intervention approach to advocate for more students with DS to be included in general
education programs or settings for less severely disabled students (Fidler & Nadel, 2007;
Morgan, Moni, & Jobling, 2004).
In the 1990s, policies in the United States and other Western countries began to shift
toward providing students with disabilities greater access to the general education curriculum, or
core curriculum (Buckley & Bird, 2000; Laws, Buckley, Bird, MacDonald, & Broadley, 1995).
In 1997, amendments to the Individuals with Disabilities Education Act (IDEA) of 1990 and its
predecessor the Education for All Handicapped Children Acts of 1975 (P.L. 94-142) established
new guidelines for creating Individualized Education Programs (IEPs) for students with
disabilities. To address research demonstrating that students with disabilities can learn the same
content as their nondisabled peers but with different strategies and timelines, IDEA 1997
mandated that the IEPs for all students with disabilities list goals and objectives to foster their
progress in the general education curriculum, particularly in the areas of literacy, mathematics,
and transition to careers and independent living after high school (Individuals with Disabilities
Education Act [IDEA], 1997; Yell, Rogers, & Rogers, 1998). This practice, referred to in the
United States before 1997 and internationally as mainstreaming and renamed the “least
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restrictive environment” (LRE) in the 1997 revision of IDEA and since then, is designed to
ensure that student are provided with standards-based instruction under the guidance of both
general and special education teachers who possess strong command of the curriculum,
instructional strategies, and assessment methods necessary for students with disabilities to meet
those expectations (Bellamy et al., 2002). With ever-increasing legal mandates regarding the
need to help students with disabilities meet grade-level standards, research in the past three
decades has focused more intensely on the extent to which mainstream pedagogies can be
implemented with students with Down syndrome and other intellectual or cognitive disabilities.
Summary
Individuals with Down syndrome (DS) experience a variety of physical, behavioral, and
learning characteristics that differentiate them from their nondisabled peers, yet these same
phenotypes cause them to be similar to other children with moderate to severe intellectual
disabilities. Students with DS typically develop at a chronological rate that is approximately 50
percent slower than that of normally developing children, and this delayed development often
affects physical growth and development as well as the cognitive skills necessary for learning.
In particular, many individuals with DS experience significant vision and hearing impairments
that affect development in speech production, listening comprehension, and reading acquisition.
Yet since the 1990s, new legal requirements have required schools to focus greater attention on
helping students with disabilities learn the same curriculum as their nondisabled peers. Hence,
new research on effective learning programs for students with Down syndrome has been
centered on strategies more typically used with mainstream populations.
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The Debate Over Sight Word Approaches in Teaching Students to Read
Normally developing children in traditional K-12 settings are taught to read from age 5 to
8 in kindergarten through third grade (California Department of Education, 2007). Stanovich
(1986) observes that students who read early and successfully not only reap the advantages of
early literacy but also accumulate experiences with print that continue to differentiate good
readers from poor readers throughout their academic careers. Yet most children with Down
syndrome (DS) do not attain an equivalent mental age necessary for reading acquisition as
nondisabled children until they reach a chronological age between 11 and 14 or approximately
twice the age as their normally developing peers (Fidler, Most, & Guiberson, 2005; Mayo
Foundation for Medical Education and Research, 2011). Since most children with DS do not
reach the mental age necessary for blending auditory and visual stimuli in reading until
adolescence, researchers and practitioners have questioned the practicality of teaching children
with DS to read using traditional methodology and have experimented with sight word
approaches and other adaptive strategies (Browder & Lalli, 1992; Browder & Xin, 1998; Cossu,
Rossini, & Marshall, 1993; Singh & Singh, 1986; Stanovich, 1985). However, not all aspects of
reading in individuals with DS emerge as readily as others. Research to date suggests a distinct
profile of areas of strength and weakness within literacy skills in people with DS; this profile
includes stronger word identification skills, poorer word attack skills, and poorer comprehension
(Cupples & Iacono, 2000; Kay-Raining Bird, Cleave, & McConnell, 2000).
Some reviews have documented positive effects of sight word approaches on students
with mild-to-moderate intellectual disabilities (Browder & Lalli, 1992; Browder & Xin, 1998;
Buckley & Bird, 1993; Singh & Singh, 1986; Stanovich, 1985). In a landmark study, Cossu,
Rossini, and Marshall (1993) found evidence that children with DS do not always learn to read in
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the same manner as children with normal development. Their study of 10 Italian children with
DS with similar reading skills as those in a control group of 10 nondisabled children found that
children with DS can acquire fundamental and even advanced reading skills without adequate
knowledge and application of grapheme-morpheme relationships, or phonological awareness.
This study sought to dispute the findings of Bradley and Bryant (1983), who found a causal link
between phonological awareness and segmentation skills, such as a child’s ability to recognize
and produce rhymes or identify and categorize the number of distinct sounds in a word, and a
child’s ability to read. The authors concluded that due to their finding that children with DS who
can read to some extent demonstrate a gross failure on phonological awareness tasks even when
controlling for mental age, these children have learned to read through sight word approaches,
and those practices should be emphasized more during classroom instruction. This study, though
seminal at the time for its research design and carefully controlled groupings, has since been
refuted by numerous studies finding either causal or correlational relationships among
phonological awareness and reading achievement among individuals with DS.
Another seminal study in the field of literacy development for students with Down
syndrome that supports earlier claims touting the use of sight word approaches has played a
major role in the development of the Down Syndrome Learning Center’s instructional
philosophy. Byrne, MacDonald, and Buckley (2002) found that individual word reading, which
relies heavily on visual processing, is an area of relative strength for students with DS as
compared to other cognitive or memory-dependent skills. When controlled for age, as students
with DS have a mental age that is approximately half that of their chronological age, the students
with DS and the control group of reading-matched students could read individual words with the
same accuracy. The two-year study found that most students with DS are capable of learning to
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read single words or two-to-three word sequences. However, the authors found no evidence over
the two-year period to support the hypothesis that learning to read will help to enhance language
and memory development in children with Down syndrome. This confirms an earlier study
(Buckley & Bird, 1993), as the authors found that visual memory may be more effective for
children with DS than their auditory memory for short sequences of information, thus giving rise
to their theory supporting sight word approaches in teaching students to read over phonics-based
approaches. Furthermore, the authors assert that this trait is the reverse of the development seen
in typical children, where auditory memory is often more developed than visual memory; thus,
the authors assert that teaching reading to students with DS may need to be fundamentally
different than for typical peers or those with other disabilities impacting reading development.
The passage of the Elementary and Secondary Education Act of 2001, otherwise known
as “No Child Left Behind” (NCLB), produced a dramatic shift in the research on reading
development and subsequent changes in classroom reading instruction in American public
schools (No Child Left Behind [NCLB], 2003). One result of the law was the controversial
adoption of the National Reading Panel (NRP)’s meta-analysis of the experimental and quasi-
experimental studies on reading development, which identified five causal factors with the
greatest effect sizes contributing to reading achievement: phonological or phonemic awareness,
phonics, fluency, vocabulary, and reading comprehension (National Institute of Child Health and
Human Development, 2000). After NCLB’s passage, these findings became the basis for all
reading curricula and programs funded at least in part by the federal government, including those
for students with disabilities.
Connected to NCLB was a new mandate requiring all federally-funded reading research
to focus on validating the NRP findings (Yell, Katsiyannas, & Shiner, 2006). Given that this
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shift in federally-sanctioned pedagogies did not include sight word approaches for reading
instruction, the published research on reading achievement for students with intellectual
disabilities from 2001 to the present centers on the five tenets of reading in the NRP report (Al
Otaiba & Hosp, 2004). As a result, the research from the past decade also reveals a trend in the
field: these studies refute earlier claims regarding the positive gains made by utilizing sight word
approaches as well as those that show no relationship between phonological awareness and
reading achievement for students with Down syndrome and other intellectual disabilities.
Early studies following NCLB’s passage focused on attempts to isolate the five NRP
reading domains in reading assessments for students with Down syndrome and intellectual
disabilities. Cardoso-Martins and Frith (2001) investigated the relationship between alphabetic
skills, such as phoneme knowledge, and logographic skills, or sight word strategies, in word
reading ability among individuals with Down syndrome with a mental age commensurate with
reading readiness. The authors’ findings suggest that when individuals with DS perform well on
a task assessing the ability to detect phonemic similarities in words when compared to
nondisabled children with matched reading abilities, this ability enables individuals with DS to
acquire the phonological and decoding skills necessary for reading and fluency despite their
cognitive limitations. However, in order to minimize working memory load, the researchers
presented words both pictorially as well as verbally and therefore, the extent to which the
students improved their auditory or visual memory retrieval skills was not measured.
To address widespread concerns that individuals with DS lack the requisite memory and
retrieval skills necessary for decoding, fluency, and comprehension, Boudreau (2002) studied the
relationship between visual memory and visual discrimination skills and reading ability. Using a
stage theory framework more often associated with studies on dyslexic readers (Chall, 1983;
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Ehri, 1991; Frith, 1985), Boudreau posited that since most typically developing children improve
their reading ability at least partially through a dependence on logographic skills (sight
word reading), readers with DS make similar progress in reading when utilizing both logographic
and phonological skills on tests of reading accuracy and reading comprehension. This evidence
demonstrates that visual processing and visual memory retrieval skills are less impaired than
other areas of cognitive skill development in individuals with DS and should be utilized during
reading instruction. It also suggests that language abilities are most strongly correlated with
measures of word identification, word attack, and comprehension for the group with DS. The
relatively good performance of children with DS on some measures of traditional literacy
domains has given rise to further evidence that children with DS demonstrate reading skills that
are equivalent to or more advanced than would be expected based on IQ and mental age.
Other studies conducted in the years following the passage of NCLB reveal the presence
of phonological awareness skills in students with Down syndrome and posit similar implications
for the development of curriculum and instructional practices that could address deficits in
phonological awareness. Snowling, Hulme, and Mercer (2002) conducted correlational analyses
that indicated a relationship between phonological skills and reading for groups of normally
developing children as compared with those with DS. But since letter-sound knowledge did not
predict reading whereas it did for the control group of normally developing children, the authors
suggested that children with DS can identify initial phonemes in words even though they struggle
to understand phoneme invariance, rarely develop complete phonological awareness, and may
rely less on phonological skills for reading than nondisabled children. These two studies
illustrate the need for additional research into the effectiveness of traditional reading pedagogies
with children with DS. Future research on the use of more traditional reading methodology will
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help clarify the role that each element of reading plays in developing reading accuracy,
comprehension, and fluency among individuals with DS.
Summary
Early research on the domains of reading development among individuals with Down
syndrome focused on non-systematic elements that were not dependent on auditory memory.
Before passage of NCLB in 2001, researchers sought to define what is known about deficits in
phonological awareness and memory among individuals with DS, and linked that data to
pedagogical approaches such as sight word reading strategies. Since NCLB did not advocate
sight word reading approaches, there has been a renewed focus on disproving earlier research
that denied a causal link between phonological awareness and reading achievement and
identifying the attributes of phonemic awareness that represent both strengths and weaknesses
for individuals with DS. Additional research is emerging that intends to identify promising
practices that might help students with DS use both phonological and logographical skills to read
with more fluency and comprehension.
Phonological Awareness Approaches
Following the passage of No Child Left Behind, research emerged that shed light on the
nature of reading for students with Down syndrome who lacked skills in one or more of the five
areas of reading identified by the National Reading Panel. Although many researchers have
shown that short- and long-term memory retrieval affect students’ ability to use phonological,
phonemic, or decoding skills to attack new and unfamiliar words (Abbeduto, Warren, &
Conners, 2007; Allor, Champlin, Gifford, & Mathes, 2010; Buckley & Bird, 1993; Byrne,
MacDonald, & Buckley, 2002; Kjeldsen, Niemi, & Oloffson, 2003; Lee, Pennington, & Keenan,
2010; Lundberg, Frost, & Petersen, 1988), much of the research of the last decade has focused
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blending integrated approaches to literacy instruction with the use of systematic and explicit
phonological awareness approaches as a support for students with Down syndrome.
One noteworthy longitudinal study of secondary classrooms diverse in student ability and
students’ prior knowledge of literacy sought to identify the elements of effective pedagogy for
teaching reading and writing to adolescents (Langer, Close, Angelis, & Preller, 2000; Langer,
2001). The authors identified six guidelines for effective reading and writing instruction in
middle and high school general education classrooms, and these findings have often been used as
a starting point for researchers interested in studying blended literacy approaches for students
with intellectual disabilities (Morgan, Moni, & Jobling, 2004). The findings, which reflect
constructivist and/or sociocultural approaches to teaching literacy (Au, 1998; Palinscar, 1998),
are the following: (1) Students learn skills and knowledge in multiple lesson types that are either
separated, simulated, or integrated in their approach; (2) Teachers integrate preparation for
assessments into instruction; (3) Teachers make connections across lessons and areas of the
curriculum; (4) Students learn the strategies necessary for independence and automaticity with
literacy; (5) Instruction is focused on training students to be generative thinkers, as teachers go
beyond acquisition of skills or knowledge to engage students in creative and critical uses of their
knowledge and skills; and (6) The instructional setting fosters “cognitive collaboration,” or
students working in groups where they engage in thoughtful, interactive conversation. The
findings are designed to be inter-related and supportive of one another, each building on the next
in defining a set of characteristics of high-performing teachers and classrooms. The authors’
findings undergird a pedagogical philosophy that is based on apprenticeship-oriented practices
designed to scaffold and support students in developing meaningful and independent use of
literacy skills. However, constructivist and sociocultural approaches are not often cited in
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studies designed to remediate reading and literacy skills in students with disabilities (Gersten,
Fuchs, Williams, & Baker, 2001; Moni & Jobling, 2001). The majority of the limited literature
on the teaching of reading and literacy skills to students with DS or intellectual disabilities
focuses on separated approaches that teach skills in isolation from one another, rather than the
classroom-based approaches oriented toward constructivism or sociocultural learning theory that
have been shown to be effective for comprehensive literacy programs.
Many theories of literacy development have been utilized to explain phenomena in
reading acquisition in students with Down syndrome. Gombert (2002) applied a metalinguistic
theory of early reading development to illustrate a strong correlation between reading and
phonological awareness skills such as segmentation, deletion, and phoneme counting. Gombert
(2002) concluded that alphabetic reading is a “pacemaker” for the development of explicit
phonological awareness. Using an emergent literacy framework more often used with
nondisabled or learning disabled populations (Farrell & Elkins, 1994), Lemons and Fuchs (2010)
theorized that students with DS develop literacy skills well into adolescence due to several
developmental factors. Using an intervention formative design, the authors found that a majority
of students with DS aged 12 to 16 demonstrated statistically significant growth on letter sounds,
taught sight words, and decodable words, and students with DS who entered the study with more
advanced word identification skills made even greater gains in nonword reading (also referred to
as nonsense word reading). Findings from this study suggest that practitioners and curriculum
developers should incorporate elements of explicit, systematic decoding instruction into
interventions for students with DS, especially those who have developed a sight word vocabulary
and some phonological awareness. But given that some students did not respond to this type of
intervention, as was also documented among the nondisabled populations included in the
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National Reading Panel’s meta-analysis, more attention needs to be paid to alternative settings,
curricula, and pedagogies that can either remediate gaps in decoding skills or facilitate reading
acquisition in spite of them.
Given the increased attention on decoding as a critical component of reading success, a
meta-analysis of eight studies compared the nonword decoding skills of students with Down
syndrome with nondisabled peers matched for reading ability on tests of word attack skills
(Næss, Melby-Lervåg, Hulme, & Halaas Lyster, 2012). Students with DS were found to have
equivalent nonword decoding skills as typically developing children when matched for word
recognition level, but students with DS showed deficits on measures of two underlying skills
considered important and possible prerequisites or predictors for decoding: vocabulary and
phonological awareness. Differences in vocabulary, but not phonological awareness, were
predictive of differences in nonword decoding skills. As a result of this meta-analysis and other
studies, the authors concluded that the high proportion of variance in nonword reading skills
attributable to vocabulary supports suggestions that phonological awareness will gradually
develop as vocabulary increases and that larger vocabulary size will be associated with better
phonological awareness.
Recent research has focused on the relationship between explicit phonics-based
instruction and authentic reading in intervention settings for students with Down syndrome,
particularly adolescent students. In a three-year longitudinal study of adolescents with DS
enrolled in the LATCH-ON (Literacy and Technology Hands-On) program developed by the
study’s authors, Moni and Jobling (2001) found that reading accuracy, rate, and comprehension
all improved through an approach that coupled phonics-based instruction with a sociocultural
literacy approach that integrates reading, writing, speaking, listening, viewing, and technological
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skills. The authors showed that when literacy instruction is presented as a social process and as a
repertoire of social practices situated in their unique contexts, a sociocultural view of literacy
posited by Gee (1996), the approach facilitates the use of a wide range of teaching strategies
allowing teachers (or in this case, researchers-as-tutors) to focus on students’ strengths and
interests as well as their literacy needs. Programs that teach explicit phoneme segmentation and
blending skills in the context of learning letter-sound relationships during authentic book reading
have also shown increases on subtests of letter-sound knowledge and early word recognition and
those gains are maintained as many as five months following the intervention (Goetz, Hulme,
Brigstocke, Carroll, Nasir, & Snowling, 2008). Baylis and Snowling (2011) studied an
intervention program that targeted phonological skills such as rime, letter-sound
correspondences, word analysis, and whole word reading within the context of reading high-
interest books. The results showed a significant improvement in word reading skill and alphabet
knowledge for the group, with four children developing a decoding strategy for the reading of
unfamiliar words, that was maintained in repeated measures after the intervention. However,
given that the researchers often took the role of teacher or tutor in these intervention settings,
more research is needed to determine how tutors can be recruited and trained to use this blended
approach.
Yet capturing the extent to which students with DS use phonemic awareness skills while
reading has proved challenging using the instruments most commonly used to detect reading
difficulties. Kennedy and Flynn (2003) found that the current assessment protocols and
methodologies are not sufficient to detect how often, when, and how students with DS use
phonological awareness skills while reading, thus placing them further at risk for being identified
with reading failure. Given the documents deficits in both reading curriculum and assessments
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for students with severe cognitive disabilities, recent research has focused on developing unique
curricula and batteries of novel and existing assessments that might accurately capture reading
achievement. In one landmark experimental study, the authors developed a scripted curriculum
designed to address 13 of the elements of early reading instruction identified by the National
Reading Panel in a format that would accommodate for students with severe intellectual
disabilities who were either verbal or nonverbal, the first such curriculum of its kind (Browder,
Ahlgrim-Delzell, Courtade, Gibbs, & Flowers, 2008). After establishing construct validity for
both the Early Literacy Skills Builder (ELSB) curriculum and its accompanying Nonverbal
Literacy Assessment (NVLA), the authors implemented a control-treatment design for students
in their early elementary grades and utilized other norm-referenced literacy and intelligence
measures to further validate the results. The authors established two major findings: the
curriculum’s integration of multiple literacy skills improved phonemic awareness more than
without the ELSB, and the NVLA allowed students with severe disabilities to demonstrate their
literacy learning in ways that could not be captured by traditional intelligence and literacy tests.
Qualitative studies may be a critical yet missing link in understanding and assessing the
role that phonological awareness plays in reading for students with moderate-to-severe
intellectual disabilities. Morgan, Moni, and Jobling (2004) conducted a case study of six young
adults ranging in age from 18 to 25 years who were part of a larger evaluation of the LATCH-
ON reading program (Moni & Jobling, 2001). The authors observed that when reading
instruction continues into adolescence, a time when students with DS are regularly switched to a
life skills and community-based instruction oriented program, explicit teaching in both phonics
and comprehension significantly improved reading comprehension. Another qualitative analysis
sought to define literacy in both the traditional sense (i.e., phonics) and in non-conventional or
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inclusive ways for students with significant learning challenges in the United Kingdom (Lacey,
Layton, Miller, Goldbart, & Lawson, 2007). Although the aim of the study was to find and
describe examples of authentic practice in teaching literacy to this population, the researchers
found that teachers used more traditional and conventional, phonics-based approaches than
inclusive, “new literacy” approaches such as filmmaking, storytelling, and live theatre, and more
so than teachers of nondisabled students. The authors postulate that even though the methods
espoused by their government do not always seem to be appropriate for this population, teachers
nonetheless feel inclined and even pressured to use them and give significant time and attention
to helping students learn to read using these traditional approaches.
Summary
Many theories of literacy development have been utilized to explain phenomena in
reading acquisition in students with Down syndrome, such as sociocultural approaches,
metalinguistic theory, and an emergent literacy framework. Each has sought to place
phonological awareness and other discrete reading skills within the greater context of authentic
reading to improve students’ ability to use phonics to aid in reading accuracy, fluency, and
comprehension. Recent studies on intervention settings show promise for increasing
phonological awareness skills that remain in place months after the conclusion of the program.
Qualitative studies, though uncommon in the field of literacy research on students with
moderate-to-severe intellectual disabilities, show promise in understanding the nature of teaching
practices and the resultant effects on reading achievement. The key studies cited in this section
are summarized in Table 1, below.

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Table 1
Summary of Effective Literacy Practices
Practice Key Citations
Multiple lesson types (separated, simulated, and
integrated), assessments embedded in instruction,
connected lessons, strategies for independence and
automaticity, training students to be generative thinkers,
and group processes
Langer, 2001
Langer, Close, Angelis, & Preller,
2000
Integrating alphabetic skills (letter-sound
correspondences) and logographic skills (sight word
reading)
Boudreau, 2002
Cardoso-Martins & Frith, 2001
Systematic decoding instruction Gombert, 2002
Integrating explicit instruction in phonological awareness
and phoneme segmentation into authentic book reading
Moni & Jobling, 2001
Assessments that are specifically designed for students
with moderate to severe intellectual disabilities
Browder, Ahlgrim-Delzell,
Courtade, Gibbs, & Flowers,
2008

Literacy Tutoring Approaches in Intervention Settings
Studies on literacy development among students with Down syndrome (DS) and other
intellectual disabilities are largely experimental and conducted in clinical or laboratory settings.
Hence, more studies on both classroom and intervention tutoring programs are needed to inform
practice in these settings. Additionally, results of the studies in existence have rarely been
extrapolated to public K-12 special education programs or nonpublic/private intervention settings
in the United States.
An understanding of the cognitive-behavioral phenotype among individuals with Down
syndrome can guide interventionists to address key areas of impairment before they become
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pronounced deficits and build upon characteristic strengths of children with DS (Feeley, Jones,
Blackburn, & Bauer, 2011). Despite extensive documentation of communication impairments
among students with DS, there are relatively few empirically demonstrated interventions for
individuals with DS during preschool or kindergarten or in secondary school programs (Fidler,
2005; Roberts, Price, & Malkin, 2007). Interventions are not often evaluated specifically for
individuals with DS (Fidler & Nadel, 2007). Many studies have not considered the DS
behavioral phenotype when addressing weaknesses or building upon strengths, and the few that
do not have a strong empirical foundation (Fidler, 2005). As a result, studies of tutoring
programs for nondisabled students or programs for students with learning, developmental, and/or
other intellectual disabilities have been used to guide this study due to the scarcity of studies on
tutoring programs for students with DS.
Research has shown that the teaching of reading is a complex endeavor, even when
students do not have difficulties (Snow, Burns, & Griffin, 1998; Worthy, Prater, & Pennington,
2003). Teaching reading effectively requires grounding in theory and methods of reading
instruction for diverse populations, supervised observation of successful practices, mentoring
from literacy specialists, carefully planned and executed practicum experiences, and ongoing
practice (Snow, Burns, & Griffin, 1998). Effective literacy teachers do not use one single
method; rather, they are “methodologically eclectic” (Shanahan & Neuman, 1997), possessing
the content knowledge and pedagogical background to integrate various approaches to reading
instruction, to know when and how to use what methods, how to use assessments to drive
instruction, and how to differentiate instruction depending on the nature of the student and the
setting (Duffy & Hoffman, 1999). Teaching students with persistent reading and writing
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difficulties requires additional expertise that even experienced, effective teachers of reading
often do not possess (Snow, Burns, & Griffin, 1998; Worthy, Prater, & Pennington, 2003).
After an extensive review of the literature on tutoring practices, Worthy, Prater, and
Pennington (2003) identified five elements of effective tutoring programs: the abilities and
commitment of the tutors, the nature of the instruction, the training of tutors, the supervision and
mentoring of tutors, and the evaluation of the program through analysis of student data, tutor
effectiveness, and program documents including lesson plans and student work. Although these
tutoring programs often did not specify whether they served students with disabilities, the
interview protocols developed to arrive at these five elements will be replicated for use in this
study to determine their utility for such specially designed programs.
Teachers and tutors often build on the research foundation on functional skill
development to target specific academic skills for students with severe cognitive disabilities in
intervention settings. Browder and Cooper-Duffy (2003) posit that research suggests that yearly
standards-based progress may best be documented through focusing on specific, meaningful
responses that are taught to mastery, although future research may demonstrate ways for students
with severe cognitive disabilities to learn complex concepts and large chunks of varied academic
material. Based on prior evidence that students with severe disabilities can learn skills related to
daily routines, Browder and Cooper-Duffy also advocate linking academic responses to specific
functional uses, including opportunities to practice academic skills across a variety of settings.
In a follow-up literature review specific to science skills, Courtade, Spooner, and Browder
(2007) found considerable evidence within the narrow research base on science pedagogy for
students with moderate to severe intellectual disabilities that this population benefits from
instruction in highly specific skills when coupled with modeling and learning strategies designed
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to reduce error. The interventions found in the 11 identified studies linked effective strategies in
science to evidence-based reading and math research for students with significant cognitive
disabilities. These studies also mention the critical role that the teacher and tutor selection
process plays in the overall effectiveness of any intervention.
Research on tutoring has demonstrated that tutors, even those who lack formal training in
reading pedagogy, can improve early reading outcomes for at-risk students and students with
learning or cognitive disabilities (Osborn, Freeman, Burley, Wilson, Jones, & Rychener, 2007;
Shanahan, 1998). In a meta-analysis of the research on literacy tutoring approaches in
intervention settings, the largest effect sizes were noted for interventions targeting at-risk
elementary students that utilized trained volunteers or college students as tutors (Elbaum,
Vaughn, Hughes, & Moody, 2000). For one-to-one tutors conducting interventions with some
training in one of several widely used elementary reading programs, including Reading Recovery
and Success for All, the programs produced notable gains in reading achievement when tutors
were college students and adult volunteer tutors, although tutoring programs that utilized
certified teachers yielded more positive results than those using paraprofessional tutors (Askew,
Fountas, Lyons, Pinnell, & Schmitt, 1998). One of the strategies used in Reading Recovery is
for teachers to analyze students’ reading miscues, or errors, through an oral reading assessment
process known as a running record (Goodman, 1995). Most reading miscues can be attributed to
one or more of three types: graphophonemic miscues may indicate misapplication or inadequate
knowledge of phonics and decoding, semantic miscues may indicate the student does not
understand the context of the sentence, and syntactic miscues that indicate that the student does
not understand the construction of the sentence and the part of speech that is expected in that
place in the sentence. This indicates that the more complicated and highly technical reading
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intervention strategies that are more commonly used by certified teachers during classroom
instruction, such as running records and miscue analysis, require more training than what is often
given to volunteer or college-age tutors and as such, may not be the best approach for strategy
instruction in tutoring settings.
In a similar study, Allor and McCathren (2004) examined the effectiveness of a highly
structured, systematic tutoring intervention implemented by minimally trained college students
with two cohorts of at-risk first-grade readers. After participating in three one-hour training
sessions, tutors in the experimental group worked in individual sessions three to four times a
week for one school year, with each cohort of tutees receiving approximately 10 to 14 hours of
instruction across 44 sessions, whereas control group tutors received no training. Tutors in the
experimental group also received some follow-up assistance throughout the year. The
curriculum for both groups included mostly traditional reading strategies: games to teach
phonemic awareness and letter-sound correspondence, reading of leveled books, simple
comprehension strategies, and structured word-study activities. Significant differences were
found on measures of phonemic awareness and nonsense word reading for both cohorts, but the
experimental group’s students demonstrated greater results with real-word identification. The
results indicate that for programs that utilize more traditional reading strategies, tutors who
receive even small amounts training and assistance can accelerate reading development for at-
risk elementary students. This research demonstrates that even when selecting tutors who have
some prior experience or who have received prior training in literacy, the tutoring program staff
should provide additional training and guidance to make their expectations clear to tutors and to
ensure student success.
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The quality of the training, ongoing and support, and expert mentoring has a significant
impact on instructional effectiveness. Tschannen-Moran and McMaster (2009) explored the
relationship between the professional development format for a new teaching strategy and the
effect on teachers’ self-efficacy beliefs for reading instruction and the effect on their
implementation of the new strategy. The study illustrates how teachers’ beliefs about their
ability to teach reading using a new strategy are affected by the type of professional development
they receive during its implementation. Leveraging Bandura’s (1977) theory of self-efficacy, or
“a future-oriented belief about the level of competence a person expects he or she will display in
a given situation” (p. 229), the authors posit that self-efficacy and efficacy as measured by others
can be shaped by professional development that begins with traditional training opportunities but
also incorporates modeling and coaching from skilled experts and frequent opportunities for
practice. The authors hypothesize that a combination of these four sources of self-efficacy will
result in the optimal learning environment for both teachers and their students. The study
involved four different treatment groups for groups of teachers at four elementary schools, where
each teacher group and school received a different treatment: (1) informational workshop alone
(verbal persuasion); (2) the workshop with modeling (vicarious experience); (3) the workshop
with modeling and opportunities for practice (limited mastery experience); and (4) the workshop
with modeling and opportunities for practice and coaching from an expert (authentic mastery
experience). The proposed link between instructional improvement and professional
development was supported by Guskey’s (2000) model of teacher change, in that the majority of
instructional improvement programs fail because they do not take into account what motivates
teachers to engage in professional development and the process by which change in teachers
typically takes place. The most significant implication of this study is that professional
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development that is composed primarily of verbal persuasion, vicarious experiences, and limited
mastery experiences are unlikely to lead to increased use of the targeted strategy or increased
self-efficacy. Instead, the addition of coaching during an authentic, task-specific mastery
experience, when coupled with individualized training/verbal persuasion, and ample time for
both modeling and practice with the coach produced the highest ratings of self-efficacy as well
as the highest ratings of teacher efficacy from experts.
Given the limited time frame involved in tutoring programs, students are likely to engage
in significant amounts of oral reading and the corresponding learning tasks will likely be based
upon text that is read aloud. Several studies have substantiated that oral reading skills are a
significant factor in determining reading competence (Adams, 1990; Bear, 1991). Yet, oral
reading for students with speech and language impediments stemming from medical disorders
such as Down syndrome and other physical or intellectual disabilities may significantly impede
oral reading fluency and reading skills development (Abbeduto, Warren, & Conners, 2007). One
of the characteristics of oral reading difficulty stems from lack of prosody, or the fluent and
accurate rhythm, stress, and intonation of speech (Allington, 1983). However, since reliable,
valid, efficient methods for assessing oral reading fluency are in use in a variety of classroom
and intervention settings, teachers can but frequently do not incorporate systematic instruction
and assessment in oral reading fluency in supplemental reading programs as a way to leverage
improvement in other reading areas and literacy domains, particularly for students with
disabilities that impact reading achievement. (Fuchs, Fuchs, Hosp, & Jenkins, 2001). Given that
oral reading ability has been linked to students’ self-efficacy and motivation to persist through
texts that are above their reading ability (Gambrell, 1996), both core and supplemental literacy
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programs that attend to oral reading fluency and prosody may be more effective at improving
overall reading achievement.
Research has also looked at ways to bridge traditional reading instructional strategies for
nondisabled students with those for students with moderate to severe intellectual disabilities,
particularly adolescent students. Farrell and Elkins (1994) documented the need for the
curriculum and instructional methods for teaching reading to students with Down syndrome to
match those used in mainstream settings, though applied on a different timeframe and using
differentiated classroom and tutoring designs given the significant developmental delays. They
found that students with DS have a relative strength in receptive language that is more closely
related to both their chronological and intellectual age. However, they posit that the most
distinctive language difficulty associated with DS is in expressive language skills such as
articulation of sounds, words, and ideas. Advocating an approach similar to the Natural
Approach theory for second language learners (Krashen & Terrell, 1983), the authors
hypothesize that a program laden with frequent opportunities for purposeful social and
intellectual language exchanges with skilled language users such as tutors will allow students
with DS to bridge receptive language skills to more expressive uses.
After the reauthorization of IDEA in 2004 (often referred to as IDEIA) and its heavier
emphasis on inclusion of students with moderate-to-severe intellectual disabilities in the general
education program, researchers began focusing on intervention-based approaches that are more
typically used with nondisabled students. In contrast to intervention programs that utilize college
student or adult tutors, peer tutoring has often been shown to have a demonstrable effect on both
achievement and self-efficacy indicators such as motivation, engagement, and persistence
(Agran, 1997; Smith & Nelson, 1997; Wehmeyer, Agran, & Hughes, 1998). However, the
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majority of the research on peer tutoring has been conducted with students with mild-to-
moderate learning or developmental disabilities (Stenhoff & Lignugaris, 2007). Early results
from a few significant studies show promise for using either cross-age or cross-ability tutoring in
programs for students with severe intellectual disabilities. One study described the efficacy of
using students with intellectual disabilities as peer tutors for other students with learning or
cognitive disabilities who need support with academic, social, and daily living skills (Spencer &
Balboni, 2003); however, studies on peer tutoring in the past decade have not included students
with moderate-to-severe intellectual disabilities.
One study investigated the effects of self-monitoring instruction delivered by peer tutors
to five middle school students with severe intellectual disabilities (Gilberts, Agran, Hughes, &
Wehmeyer, 2001). As defined in the study, self-monitoring teaches students both to notice when
a target behavior or skill has occurred and to record its occurrence. The five students, who spent
the majority of their time in special day classes for students with severe cognitive disabilities,
were included in the general education program for 1 to 2 classes per day depending on interest
and ability, courses ranging from the core subjects of reading and history and electives such as
art and Spanish. While attending a general education class, each of the five students was
assigned a peer tutor, a general education student taught to assist them and to help them
recognize their ability to perform and record any of 11 self-monitoring strategies, which included
a range of both behavioral and academic tasks such as arriving to class on time and bringing the
necessary materials to asking or answering questions. Data revealed an increase in the use of
survival skills among all five students when compared to measures taken before the tutoring
program commenced. The authors found that in order to be successful in general education
classrooms, students with intellectual disabilities need to be provided with appropriate
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educational supports, particularly self-monitoring strategies, to allow them to be more successful
with academic tasks. Yet, few studies have appeared in the research literature on the acquisition
of academic or study skills by students with severe disabilities, so further research is needed on
providing academic support for this population, particularly for those students who attend school
on general education campuses or attend one or more classes a day with nondisabled students.
Even critics of inclusive education for students with severe intellectual disabilities have
acknowledged that general education peer tutors can help increase the use of adaptive skills
among students with cognitive disabilities (Fuchs & Fuchs, 1994; Kaufmann & Hallahan, 1995).
However, these researchers have claimed that inclusion has had either few positive effects or
negative effects on these students’ progress in reading, language arts, and mathematics (Fuchs &
Fuchs, 1994), or have had negative effects on nondisabled children’s learning in inclusive
classrooms (Kaufmann & Hallahan, 1995). To study these possible “side effects” of inclusive
education, a large post-test only control group design was conducted to measure both the
adaptive skills growth of the students with severe cognitive disabilities and the academic growth
for all students in both the control and experimental classrooms (McDonnell, Thorson, Disher,
Mathot-Buckner, Mendel, & Ray, 2003). Using the Scales of Independent Behavior-Revised
(SIB-R), the researchers assessed adaptive behaviors in the areas of social and communication
skills, motor skills, personal living, and community living. Results showed that the students with
severe cognitive disabilities made statistically significant gains in adaptive skills through the use
of peer tutoring, but their placement in an inclusive classroom made no difference in scores on
reading, language arts, or mathematics assessments as compared with similarly disabled children
in special education settings. However, the study also demonstrated that the presence of students
with severe cognitive disabilities in general education classrooms did not negatively impact the
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educational achievement of nondisabled students. The results of this study are promising for
considering the inclusion of nondisabled students in tutoring or intervention programs for
students with DS.
As noted throughout this section, although there is consensus in the research community
on the value and efficacy of literacy tutoring, gaps exist in the research both for disabled and
nondisabled students. Shanahan (1998), in his comprehensive review of the field, posited that
future research needs to examine theoretical approaches to tutoring in order to determine why it
works in various situations, though recent research still focuses more on how tutoring works
more than why it does. Shanahan noted that it will be increasingly imperative to consider the
importance of tutor-student social relationships and how these relationships shape the learning
environment in future studies. His review revealed that although studies on literacy tutoring
have suggested the importance of time on task, quality of tutors’ explanations of reading rules,
use of appropriate modeling or demonstration, emphasis on specific student learning needs,
responsiveness to errors, and an empathetic or caring relationship between tutor and student,
more data is needed to establish causal links. To this end, future research is needed to determine
the connections among these variables in light of the “social and cognitive processes inherent in
tutoring” (Shanahan, 1998, p. 231).
Summary
Research over the last 20 years has demonstrated the need, value, and efficacy of literacy
tutoring for at-risk students in the general education population as well as for students with mild,
moderate, and severe learning, cognitive, and intellectual disabilities. Although the amount and
nature of the training that tutors receive depending on their age and previous experience,
controlled studies have still shown that students can recoup lost or missing reading and literacy
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skills through sustained and/or prolonged tutoring either during or beyond the school day.
However, many studies capture the curriculum and instructional strategies used but rarely
elaborate on the type of both theoretical and practical training that the tutors receive prior to
teaching, as well as the preparation of the student tutees themselves. Research has identified the
necessary elements of literacy tutoring programs that have the potential for success, but these
programs often did not include students with moderate-to-severe learning disabilities. Gaps in
the research illustrate the need to better understand why certain tutoring or intervention programs
work, considering their different theoretical foundations related to literacy development and the
social dynamics of tutor-tutee relationships. The key studies cited in this section are summarized
in Table 2, below.

Table 2
Summary of Effective Tutoring and Intervention Practices
Practice Key Citations
Drawing upon various methods and strategies to address
reading difficulties
Shanahan & Neuman, 1997
Five elements of effective tutoring programs: the abilities
and commitment of the tutors, the nature of the
instruction, the training of tutors, the supervision and
mentoring of tutors, and the evaluation of the program
Worthy, Prater, & Pennington, 2003
Training and support for tutors before and during the
program
Allor & McCathren, 2004
Askew, Fountas, Lyons, Pinnell, &
Schmitt, 1998
Tschannen-Moran & McMaster, 2009
Leveraging instruction in functional skills to address key
reading and academic skill development
Browder & Cooper-Duffy, 2003
Courtade, Spooner, & Browder, 2007
Peer tutoring from nondisabled students with frequent
opportunities for meaningful language exchange
Farrell & Elkins, 1994
Gilberts, Agran, Hughes, & Wehmeyer,
2001
Tutor-student (tutee) relationships Shanahan, 1998

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General Summary and Conclusion
Early research on the domains of reading development among individuals with Down
syndrome focused on non-systematic elements that were not wholly dependent on auditory and
visual memory (Browder & Lalli, 1992; Browder & Xin, 1998; Singh & Singh, 1986; Stanovich,
1985). Before passage of NCLB in 2001, researchers sought to define what is known about
deficits in phonological awareness and memory among individuals with DS, and linked that data
to pedagogical approaches such as sight word reading strategies that are designed to
accommodate for deficits in auditory and visual memory (Cossu, Rossini, & Marshall, 1993),
rather than address the challenges that those deficits present in teaching students with DS to read.
Since 2000, there has been a renewed focus in schools to teach reading using the
elements identified by the National Reading Panel (NICHHD, 2000), and recent research has
attempted to address those elements in studying reading instruction for students with DS. Many
theories of literacy development have been utilized to explain phenomena in reading acquisition
in both nondisabled students and those with DS including sociocultural approaches (Langer,
2001; Langer, Close, Angelis, & Preller, 2000), metalinguistic theory (Gombert, 2002), and an
emergent literacy framework (Farrell & Elkins, 1994; Lemons & Fuchs, 2010). Many studies
have disproven earlier research that found no causal link between phonological skill
development and reading ability (Cossu, Rossini, & Marshall, 1993). Instead, recent research
has focused on pedagogy, methodology, curricula, and assessments that might better teach and
test phonological awareness and phonics development among students with DS (Browder,
Ahlgrim-Delzell, Courtade, Gibbs, & Flowers, 2008; Kennedy & Flynn, 2003; Moni & Jobling,
2001). Yet, there has been no consensus in the research community on the extent to which
students with DS can be taught to decode using phonological approaches, sight word approaches,
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or a combination of the two. And in striking contrast with the research on reading development
for nondisabled students, a notable gap in the research exists in the areas of comprehension and
fluency practices that support reading development, particularly in the area of comprehensive or
balanced literacy approaches that can be utilized in either classroom or intervention settings.
There is also a dearth of qualitative research on literacy programs for students with disabilities,
which could clarify characteristics of effective practices and programs that can be leveraged to
improve current literacy teaching and learning.
Most of the literature on reading acquisition among students with DS has taken place in
clinical or laboratory settings designed to approximate tutoring programs or intervention clinics,
and much of that research has taken place outside of the United States. Despite extensive
documentation of communication impairments among children with DS, there are relatively few
empirically demonstrated interventions for adolescents with DS (Fidler, 2005; Roberts, Price, &
Malkin, 2007). Studies have documented effective literacy practices for students in middle and
high school (Langer, 2001; Langer, Close, Angelis, & Preller, 2000), including findings that
advocate teaching reading skills in both separated or direct instruction approaches in classroom
and intervention settings as well as in integrated activities that promote reading, writing, and
language development. Yet, studies on integrated teaching approaches are uncommon in the
literature for students with DS or other intellectual disabilities.
Recent studies have begun to shed light on how literacy tutoring programs and
intervention approaches can be effective. The elements considered to be features of effective
literacy tutoring programs include the abilities and commitment of the tutors, the nature of the
instruction, the training of tutors, the supervision and mentoring of tutors, and the evaluation of
the program through analysis of student data, tutor effectiveness, and program documents
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including lesson plans and student work (Worthy, Prater, & Pennington, 2003). But again, these
classroom and tutoring practices have not been studied extensively with students with moderate-
to-severe intellectual disabilities, so their efficacy with that population is unknown. Research
has also shown that the relationship between tutor and tutee also appears to play a role in literacy
development (Shanahan, 1998), but this line of inquiry about the social and cognitive nature of
reading instruction has rarely been applied to settings for students with intellectual disabilities.
Gaps in the research illustrate the need to better understand both how and why certain tutoring or
intervention programs work, particularly for students with DS and other intellectual disabilities,
and further analysis of different theoretical foundations related to literacy development and the
social dynamics of tutor-tutee relationships is needed to determine a direction for existing and
future literacy intervention programs.
This review of the literature suggests that students with Down syndrome would most
likely benefit from sustained and intensive reading instruction both in the classroom and in
tutoring or intervention settings that continues well into adolescence. Approaches that are
blended and dynamic in theory and approach seem to hold the greatest possibility for students
with DS, particularly those age 11 and older. These methods should teach phonological
awareness and phonics in systematic ways with specific attention to developing auditory and
visual memory, while simultaneously integrating the additional literacy domains of listening,
speaking, fluency, comprehension, and writing to acculturate students with DS into the literate
activities and practices they will need to become independent adults. Reading programs that
develop students’ auditory and visual memory capacity for using phonics skills and sight word
approaches in separated lessons that continue into adolescence, when coupled with integrated
approaches utilizing listening, speaking, and writing that are more commonly used in general
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education settings, should help students with DS develop literacy skills that approximate those
used more readily by nondisabled students. And finally, literacy tutoring programs for students
with DS should regularly address and assess the abilities and commitment of the tutors, the
nature of the instruction, the training of tutors, the supervision and mentoring of tutors, and the
evaluation of the program through analysis of student data, tutor effectiveness, and program
documents including lesson plans and student work.

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CHAPTER 3
RESEARCH METHODOLOGY
There is little empirical evidence on the nature and elements of effective literacy
programs for students with Down syndrome (DS), particularly adolescent students (Fidler, 2005;
Roberts, Price, & Malkin, 2007). Recent research has focused on the role that phonological
awareness plays in developing students’ auditory and visual memory in order to read with greater
accuracy (Næss, Melby-Lervåg, Hulme, & Halaas Lyster, 2012), but there is still limited
research on listening, speaking, fluency, comprehension, and writing and to what extent those
literacy domains are addressed effectively in either classroom or intervention settings for this
population. The majority of the articles published on the subject of reading achievement among
students with DS are quantitative and experimental or quasi-experimental in design; therefore,
this qualitative study explored the nature of a tutoring program as opposed to quantitative gains
made during the intervention. Additionally, research on tutoring programs intervention settings
has not examined the theoretical approaches to tutoring in order to determine why it works in
various situations, as research still focuses more on how tutoring works more than why it does so
(Shanahan, 1998). This study identifies and describes patterns and themes found in a literacy
intervention program and draws conclusions based on data to describe the overarching theory or
theories at work in the program.
The problem examined in this study is to what extent does Down Syndrome Learning
Center’s Let’s Read Now (LRN) literacy tutoring program for students with DS use research-
based practices for teaching students to read and use their literacy skills. The purpose of this
study is to describe the effective elements of a literacy tutoring program for students with DS and
to qualitatively identify and describe the gaps between its current practices and the
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recommended, research-based approaches to teaching reading and literacy skills to students with
DS and students with similar learning profiles, particularly pre-adolescent and adolescent
students.
To examine this problem, this study included observations of tutoring sessions,
interviews with tutors and program staff regarding the use of literacy theories, strategies, and
materials that are designed to improve literacy skills, and analysis of program documents to
further illuminate the nature of the LRN program. This chapter presents the research questions
guiding this study, the research design, the population and sample, instrumentation, and the
procedures and timeline for data collection.
Research Questions
The two research questions for this study define the scope of the examination.
1. What are the curricular and instructional elements of the Let’s Read Now (LRN)
literacy tutoring program for students with significant learning needs resulting from a
diagnosis of Down syndrome?
2. How does the LRN program align its practices to the research-based approaches to
core and supplemental literacy instruction?
Research Design
This study utilized grounded theory to generate an analysis of the LRN literacy program
and its current practices and will utilize a qualitative methodological framework to guide the
inquiry. Qualitative inquiry was especially useful in this evaluation study, as grounded theory
allowed the researcher to generate analysis, findings, and theories inductively following
authentic fieldwork (Patton, 2002). Using a triangulated analysis of data from observations,
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interviews, and program documents, this study applied a formative, problem solving approach to
conducting a program evaluation.
This study shed light on the extent to which the LRN literacy program for students with
Down syndrome pairs with the research on literacy development among students with DS and
other cognitive and intellectual disabilities. The research design study sought to identify,
describe, and explain the nature of the gap between the practices Down Syndrome Learning
Center currently employs in its LRN literacy tutoring program and the elements of effective
literacy tutoring identified in the research for both disabled and nondisabled students. The
analysis of transcripts from observations of tutoring meetings and interviews with tutors and
program staff focused on the tutor as the unit of analysis. The triangulation of data from
observations of tutoring meetings, interviews with tutors and Down Syndrome Learning Center
executive staff, and an analysis of program documents also framed the recommendations for
improving the program. The gap analysis protocol was a sequential yet flexible problem solving
process that also served as the conceptual framework for the study. The primary audiences for
this study might be the directors of programs similar to those in place at Down Syndrome
Learning Center, as well as field researchers studying literacy practices and settings for students
with moderate-to-severe intellectual disabilities.
According to Patton (2002), the qualitative evaluation aspects of the study were in the
form of a nested case study in that it represented a process of gathering and analyzing
“comprehensive, systematic, and in-depth information” (Patton, 2002, p. 447) about a series of
cases that form the whole of the LRN program. Following data collection, the findings gave rise
to patterns and themes that emerged from a content analysis of three qualitative inquiry design
strategies: observations of the tutoring meetings, interviews of tutors and program staff, and
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analysis of various program documents. Patton (2002) refers to a pattern as a descriptive finding
that leads to a theme expressed in a statement that can be qualified with examples and anecdotes
from the data. In addition, the study employed emergent design flexibility, an openness to
adapting inquiry as understanding deepens and/or situations change (Patton, 2002). In so doing,
the researcher was able to respond as changes occur and to pursue new paths of discovery as they
unfolded during the study.
Initial and post-data regarding students’ reading and literacy skills and levels was not
used in this study. The Down Syndrome Learning Center does not use any standard form of
assessment at the outset or conclusion of each 10-week tutoring session. Data regarding
students’ reading improvement was only gathered anecdotally and in relation to the evaluation of
the program and not shared with tutors, program staff, students, or their parents. The data shared
by the tutors with this researcher was only utilized as part of the overall analysis of the
effectiveness of the LRN program.
This study did not utilize a quantitative analysis of this data for several reasons. First, the
content of the tutoring meetings, including the skills, strategies, and materials used by each
individual tutors, were not used in an evaluative manner, either formative or summative. And
given that each of the students enrolled in LRN receives some form of literacy instruction during
the regular school day and those settings are not part of this study, threats to validity with regard
to the outcomes of any assessments are likely and could not be eliminated.
The research questions were answered through triangulated analysis of data from the
observations, interviews, and program documents. To address the first research question,
describing the elements of the Let’s Read Now (LRN) after-school literacy tutoring program for
students with Down syndrome, the observations, interviews, and program documents were coded
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for themes and patterns regarding the program’s overarching theory of reading and literacy
development for students with Down syndrome as evidenced through tutors’ use of various
strategies and materials designed to improve students’ reading and literacy skills. In particular,
data obtained from observations and interviews with tutors clarified what they ask their tutees to
do during tutoring meetings and what students do in relation to their tutors’ expectations. To
address the second research question, the gaps between LRN’s current practices and research-
based approaches, the same data was re-coded using a separate analysis protocol designed to
determine the extent to which tutoring meetings utilize research-based elements of reading and
literacy development, with specific attention to time-on-task, phonological awareness and
phonics instruction, sight word approaches, and instruction in other literacy domains such as
listening, speaking, fluency, comprehension, and writing.
The focus of this study was on the beliefs, practices, and moves used by tutors to improve
their students’ literacy skills. Therefore, the unit of analysis for this study was the tutor. The
study did not attempt to analyze or draw conclusions regarding the students’ progress in terms of
their literacy skill development or efficacy with literacy tasks, or their parents’ roles in their
literacy development. Any interactions between the researcher, the students, and/or the parents
were incidental and were not used for evidential or analytical purposes in this study.
Population and Sample
Down Syndrome Learning Center’s Let’s Read Now (LRN) program serves students in
first grade through high school. The small but growing Down Syndrome Learning Center
program staff includes founder and executive director Helen Jansen, a practicing, certified
special education teacher specializing in students with moderate-to severe disabilities and a
parent of an adolescent child with Down syndrome. Also key to this study was the center’s
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director of programs, Judy O’Leary, a former special education teacher and also a parent of a
child with DS. O’Leary’s responsibilities include recruiting tutors for the LRN program from
local universities, particularly those seeking students in undergraduate and graduate education
programs studying to receive teaching credentials in either elementary multiple subjects or
special education. As the two staff members with the most responsibility for the content and
direction of the program, these two individuals were the focus of interviews with the program’s
executive staff.
The older children participating in LRN, typically pre-adolescent and adolescent children
in middle and high school, attend the tutoring program on Wednesdays in a cohort-based
grouping model. Since the research on literacy development among students with Down
syndrome focuses attention on students with the mental age necessary for responding to auditory
and visual stimuli which often begins at age 11 or later (Fidler, Most, & Guiberson, 2005; Fidler
& Nadel, 2007; Mayo Foundation for Medical Education and Research, 2011), this study focused
attention on the pre-adolescent and adolescent students attending LRN during the Wednesday
meetings.
Table 3, below, summarizes the tutors observed for this study.

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Table 3
Tutors Observed During this Study
Tutor’s
Name(s)
Student’s Name
and Age
Number of
Sessions
Observed
Pertinent Information about the
Tutor(s)
Karen Luke, age 7
Pedro, age 12
1
3
Most experienced tutor at the center;
Experienced preschool teacher; Usually
assigned to students with limited or no
reading skills
Melody Katie, age 13 3 Undergraduate student planning to
teach special education; Has been
assigned to work with Katie for more
than 1 year
Melissa Daniel, age 16 1 Undergraduate student planning to
teach either elementary school or
special education; Has been assigned to
work with Daniel for approximately 1
year
Michelle and
Hannah
Gregory, age 15 2 Two undergraduate students planning
to teach elementary school; First time
as tutors for the center; Assigned to co-
tutor Gregory due to his advanced
literacy skills; studied as one “tutoring
team”

Protocols
The interview protocols for this study included one for Down Syndrome Learning Center
program executive staff and a different protocol for tutors. Each interview began with a brief
introduction to the interviewee that outlined the scope of the interview. This strategy,
recommended by Patton (2002), familiarizes and orients the interviewee to the general flow and
expectations the researcher has for responses. The interview protocol had a script of questions
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that were usually read verbatim, but the end of the interview protocol was conducted in a more
interview guide style to provide opportunities to retrace ideas from earlier in the interview and/or
ask questions that might be specific to that interviewee, depending on the course of the
interview. According to Patton (2002), the interview style utilized was a combined approach
because it specified key questions to be asked exactly as they were written and left other items as
topics to be explored at the researcher’s discretion. This combined style provided the “flexibility
in probing and in determining when it [was] appropriate to explore certain subjects in greater
depth” (Patton, 2002, p. 347).
The interview protocols for both Down Syndrome Learning Center executive staff
(Appendix B) and the tutors (Appendix C) are a replication of many of the questions used in an
evaluation study of two literacy tutoring programs created in response to the America Reads
Challenge in 1996 (Worthy, Prater, & Pennington, 2003). The questions center on five elements
of effective tutoring programs: the abilities and commitment of the tutors, the nature of the
instruction, the training of tutors, the supervision and mentoring of tutors, and the evaluation of
the program.
The qualitative observation protocol (Appendix D) was used to document as much of the
dialogue, actions, and behaviors of all participants during tutoring meetings. The observation
protocol employed a sensitizing framework to stimulate thinking about how other elements
present in the actual tutoring meetings, such as physical arrangement, planned activities versus
spontaneous adaptations, and nonverbal communication, among others, can also be noted and
included in the analysis of the tutoring meetings (Patton, 2002). Observations occurred weekly
for the duration of the 10-week tutoring session and include the instructional phase and the
subsequent parent meeting for each tutoring event, when possible. Each instructional phase
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lasted approximately 45 minutes, where tutors worked one-on-one with a student to address
reading and literacy skill development. In most cases, the researcher observed more than one
tutor-tutee pairing each week to follow the trajectory of instruction practices utilized with each
student. Following the instructional phase, the tutor moved into the conferencing phase, which
involved each tutor meeting with his/her assigned student’s parent(s) for 15 minutes to debrief
the day’s instruction. Observation methodology involved both verbatim scripting and
summarization of nonverbal behaviors of tutors and students during each meeting, as well as
pictorial diagrams indicating physical arrangement of the tutoring space(s).
Procedures for Data Collection and Analysis
The researcher conducted interviews, document analysis, and observations in several
phases. Table 4, below, describes the timeline for data collection.

Table 4
Timeline for Data Collection
Type of data
Pre-Study:
April-August
2012
Study:
September-
November 2012
Post-Study:
November-
December 2012
Executive staff interviews X X
Document gathering X X X
Tutoring observations X
Tutor interviews X X

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Prior to the commencement of the study, the researcher collected documents from a
variety of print and electronic sources to ascertain the aims and functions of the Down Syndrome
Learning Center, the Let’s Read Now (LRN) program, and the other programs associated with
the center. However, throughout this study, additional documents that would help illuminate the
nature of the program were not easily accessible. The researcher asked several times for a copy
of the slideshow presentation that was used during the initial training, but the trainer did not
provide a copy. Although each tutor was asked if she would share her written lesson plans with
the researcher, none availed themselves of that opportunity. Only once did a tutor give the
researcher a copy of the instructional task used during a session (the tutor chose to email an
example to the researcher); it is included in Appendix E. No student work samples were
collected during this study, as they would have constituted human subjects research. The
available documents, including brochures and press documents from the center were analyzed
and coded for each of the research questions using the same strategies designed to identify
patterns, themes, and elements of research-based reading strategies evident in the LRN tutoring
program. Those documents are not included in the appendix as they contain extensive
identifying information that cannot be redacted.
During the 10-week tutoring session, or the intervention phase, the researcher conducted
interviews with tutors and the center’s executive staff either in person or via telephone using the
protocols outlined in Appendices B and C. Interviews with executive staff lasted from 45 to 90
minutes in length, and interviews with tutors lasted from 20 to 30 minutes in length. In-person
interviews were not audiotaped, as the background and ambient noises at the center often
prevented clear recording. Telephone interviews were typed verbatim by the researcher
simultaneously using a word processing program that recognizes and does not correct for
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shorthand, invented spellings, or fragmented speech. Weekly observations of tutoring meetings
occurred during the same 10-week time frame as the interviews using the observation protocol
outlined in Appendix D. Following the intervention, the researcher continued attempting to
gather relevant documentation that further illuminated patterns and themes in the data, as well as
conducted any follow-up interviews with executive staff or tutors.
Ethical Considerations
The Institutional Review Board (IRB) rules, regulations, and procedures were followed to
obtain the highest ethical standards possible for this study. Although this study does not
constitute human subjects research, as it is a program evaluation and not a study of the
individuals involved in the program, all tutors and executive staff received an informed consent
form (Appendix A) prior to being interviewed. The consent form ensured that all participants
were informed of the overall nature and purpose of the study and understood that participation
was voluntary and in no way affected their employment. The consent form addressed the
possible dangers and obligations of the study.

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CHAPTER 4
FINDINGS
The problem examined in this study was the limited research on literacy development and
effective practices for supplemental literacy instruction for students with Down syndrome and
other moderate-to-severe learning, cognitive, and/or intellectual disabilities that can be utilized in
either classroom or intervention settings. To operationalize this problem, this study examined in
depth the extent to which the Let’s Read Now (LRN) literacy tutoring program, one of several
academically oriented programs sponsored by the Down Syndrome Learning Center, utilized
research-based practices for teaching students with moderate-to-severe learning and cognitive
impairments resulting from Down syndrome (DS) to read and use their literacy skills. The
purpose of this study was to describe the curricular and instructional elements of a literacy
tutoring program for students with intellectual disabilities and to qualitatively identify and
describe the gaps between its current practices and the recommended, research-based approaches
to teaching reading and literacy skills to students with DS and those with similar learning
profiles, particularly pre-adolescent and adolescent students.
To examine this problem, this study utilized data from observations of tutoring sessions,
interviews with tutors and program staff regarding the use of literacy theories, strategies, and
materials that are designed to improve literacy skills, and an analysis of program documents to
further illuminate the current status of the LRN program. This chapter presents the findings from
this study, organized by each of the two research questions that defined the scope of the
examination:
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1. What are the curricular and instructional elements of the Let’s Read Now (LRN)
literacy tutoring program for students with significant learning needs resulting from a
diagnosis of Down syndrome?
2. How does the LRN program align its practices to the research-based approaches to
core and supplemental literacy instruction?
Using a triangulated analysis of data from observations, interviews, and program
documents, this study utilized a formative, problem solving approach in conducting a qualitative
program evaluation. This chapter identifies and describes the themes found in the LRN literacy
tutoring program and draws conclusions based on data to describe the overarching theories at
work in the program. The final chapter, Chapter 5, presents conclusions drawn from the findings
explained in this chapter. These conclusions form the basis for recommendations for the LRN
program based upon the data analyzed in this chapter.
The Context
The Let’s Read Now (LRN) program is a one-on-one, weekly literacy tutoring program
focusing on the development of reading and writing skills among students with learning and
cognitive delays resulting from a diagnosis of Down syndrome. The program requires active
participation by both the student and his/her parents to be successful. Skills are presented and
taught in 45-minute-long weekly tutoring sessions, and then tutors meet with parents for 15
minutes at the end of each session, where work is given to parents with the expectation that there
will be daily reading practice at home following each tutoring meeting.
The Down Syndrome Learning Center recruited both experienced teachers as well as
future teachers as tutors for the LRN program. The majority of the tutors are from local
universities, students in undergraduate and graduate education programs studying to receive
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teaching credentials in either elementary multiple subjects or special education. According to
Judy O’Leary, the center’s director of programs, the curricula, instructional strategies, and
materials used by tutors varies according to individual children’s needs; sometimes tutors bring
their own materials and sometimes they use the materials housed at the center’s offices.
However, the methods used to select curricula, strategies, and materials varied greatly from one
tutor to the next, and the center’s executive staff acknowledged that fact as a weakness in its
current structure. Although the program includes in its vision a desire to produce a “generation
of capable readers” among students with DS, at the present time the program does not use any
form of assessment to identify students’ baseline literacy skills or skill attainment before, during,
or after each 10-week tutoring cycle.
Changes to the LRN Program and Structure
During the session of the Let’s Read Now (LRN) program examined for this study,
program staff made a number of changes to address the unique needs of the students enrolled and
to adjust after a lower-than-average rate of return of experienced tutors and the need to recruit
more. The staff changed which days they offered the tutoring, the tutor recruitment and
placement process, and the types of tutoring offered to its adolescent students.
The focus of this study was the LRN program for students in early adolescence, or those
who would be enrolled in middle or high school. To accommodate the schedules of the tutors
who expressed an interest in working with the older students, the session for middle and high
school-age students was moved to Wednesday. The students who fell within the age range for
elementary school (ages 7 through 11) attended on either Tuesdays or Thursdays, and the
students who fell within the age range for middle and high school (ages 12 through 17) attended
on Wednesdays. The age ranges for the program were also no longer aligned to reading levels or
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school placement. Most of the students enrolled in the Wednesday LRN program during the
time period studied were either homeschooled and did not follow the state-adopted curriculum or
were enrolled in special day class programs in which the students have their curriculum and
instruction individualized to their needs. Thus, the changes to the the demographics of each day
of the program resulted in new adaptations to the LRN program.
For the first time, the center enrolled a middle school student, Pedro, who had not
previously been enrolled in the center’s program and also could not read. The center had not
previously worked with an older student who had limited academic skills, but they enrolled him
because the parents wanted their child to learn how to read. To provide a more age-appropriate
environment, O’Leary placed Pedro in the group with older students but assigned him to a tutor
who normally works with early readers. Karen, who was assigned as Pedro’s tutor, has been
employed as a tutor since the inception of the LRN program three years ago. Karen is a full-
time, experienced, and certified preschool teacher who lives locally and has a child with DS.
Karen and her child were initially clients of the Down Syndrome Learning Center, as her child
participated in many of the center’s early programs and events. According to O’Leary, Karen
was hired to be one of the original tutors for LRN and was instrumental in its design due to her
preschool background. Karen believes strongly in the center’s guiding principles and in the
instructional sequence that is espoused during the tutors’ training sessions. She created
instructional materials, such as worksheets and games, to accompany many of the beginning
reader books in the center’s library. To observe the use of the instructional sequence with
younger students who would more typically receive that instruction, the researcher observed
Karen and another tutor with younger students at the outset of the study.
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Tutors
The Down Syndrome Learning Center typically recruited tutors for the LRN program
from local universities, seeking students in undergraduate and graduate education programs
studying to receive teaching credentials in either elementary multiple subjects or special
education. For the session that was the focus of this study, O’Leary also hired a number of
retired elementary and high school teachers to work with some of the elementary-age students in
the program. This was done largely because she stated she was having difficulty recruiting
enough university students to replace those who did not return, as many leave due to
matriculation to their graduate program and student teaching. In nearly all cases, the sessions
were one tutor and one student, or tutee. However, depending on the needs of the student or the
level of expertise of the tutor, the LRN staff sometimes places a student with more than one tutor
for a 45-minute session or a series of sessions. For the session studied, the student with the most
advanced skills of any of the other adolescents in the program, Gregory, was given two tutors
who worked in a team teaching fashion. O’Leary also stated that she rarely assigned a tutor to
work with more than one student in a 10-week session; however, for the session studied, Karen
was assigned to two students during the 10-week session, Luke and Pedro, but on different days.
Also, although the center’s staff tried to recruit male tutors, they were unsuccessful. During the
time period studied, all staff associated with the center were female. In the adolescent group,
three of the students were male and one was female. Table 3 in Chapter 3 summarizes the tutors
and their assigned students.
Research Question 1: Curricular and Instructional Elements of the Program
The process to understand and describe the curricular and instructional elements of the
Let’s Read Now program was inductive. Each person observed and/or interviewed for this study
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possessed and demonstrated a different interpretation of the intent and purpose of the LRN
program, and each saw her role in ways that were both similar to and different from one another.
An analysis of documents from the Down Syndrome Learning Center and transcripts from
tutoring meetings, tutor training sessions and debriefing sessions, and interviews with the tutors
and executive staff revealed that there was an implied instructional philosophy for the LRN
program, but it was not stated in an overt, explicit manner.
According to O’Leary, the curricula, instructional strategies, and materials used by tutors
varied according to individual children’s needs, although the center did espouse a learning
philosophy and suggested instructional sequence during its trainings. O’Leary stated that most
tutors brought their own materials and sometimes they used materials housed at the Down
Syndrome Learning Center offices. She stated that tutors were free to bring in their own
materials so long as they were sure the students would enjoy and benefit from them. However,
the methods used to select curricula, strategies, and materials varied greatly from one tutor to the
next, and the Down Syndrome Learning Center’s staff acknowledged that fact as a weakness in
its current structure.
From the first training the tutors attended to the debriefing meetings held at the end of
each day’s tutoring meetings, it was evident that there was an operational definition of literacy
instruction for students with DS at work within the LRN program that was twofold: (1) Students
in the early stages of reading must learn to memorize common words found in most books
through a sight word approach rather than a phonics-based system; and (2) Once students can
read with some accuracy and fluency, instructional time should be focused on encouraging the
students to keep reading books that interest them, discussing them with others, and writing about
them.
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But the tutors, including some who expressed some disbelief in this operational definition
of literacy instruction during the initial training or expressed some dissonance based on their
prior experience and/or training, appeared to adhere to the overarching theory of literacy
instruction. Although in practice, each tutor observed for this study used markedly different
instructional approaches. Despite the fact that the LRN program is a literacy tutoring program,
the center’s instructional philosophy appeared to be based largely on the global behavioral
phenotype and characteristics of students with Down syndrome, rather than on research on
literacy development among students with moderate-to-severe learning, cognitive, and
intellectual disabilities or their typical peers. This element of the LRN program addresses both
the first and second research questions that guided this study; thus, it will be explored in each
subsection of this chapter.
Summary of Findings from Data Analysis
Through this inductive analysis, three themes characterize the nature of the LRN literacy
tutoring program. In some cases, subordinate themes further illuminate the major features of the
program and those will be included in the expanded analyses. Stated below in concise form,
each theme is explored in depth with further analysis and examples from observations,
interviews, and/or program documents:
1. Characteristics and expectations of the tutors. The tutors exhibited many of the
characteristics and expectations held for them by the program staff. These
expectations, which centered on the behavioral characteristics of students with Down
syndrome as opposed to instructional practices that promoted literacy development,
were outlined during the initial training and were reinforced during each debriefing
meeting at the end of each Wednesday’s tutoring meetings. However, nearly all
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tutors expressed feelings of inadequacy regarding their ability to keep their students
engaged and on task, despite evidence to the contrary.
2. Elements of tutoring for students with limited reading skills. For students with little
to no reading skills, they were provided with direct instruction using a series of
simulated learning activities that utilized a sight word approach that focused on visual
memorization. The program placed them with tutors who focused their instruction on
building sight word vocabulary gleaned from books from a beginning reading series
owned by the center. The words selected for study did not follow any systematic or
sequential patterns regarding phonics, parts of speech, or syllabication, as they were
simply words found in the target text. The majority of time during these tutoring
meetings was focused on activities designed to help students memorize words from
the text through a series of decontextualized tasks that were repeated during each
tutoring meeting.
3. Elements of tutoring for students with reading and writing skills. For students who
could read with automaticity, accuracy, and/or fluency that were somewhat
commensurate with their grade level, no direct instruction in any of the literacy
domains was observed during the tutoring meetings. The instructional emphasis was
on helping the students enjoy reading by having them read aloud from books of their
own choosing or listen to the tutor model good reading during read alouds. These
tutoring meetings incorporated some oral discussion and writing about the text, but
those activities were secondary to the read alouds, were not tied to a specific
instructional objective based on student need, and did not increase in complexity from
meeting to meeting.
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Characteristics and Expectations of the Tutors
One of the guiding principles of the Down Syndrome Learning Center is a belief in
helpful, supportive, and positive environments for students and families with DS. The center
calls this “errorless learning,” a theory stemming from the field of educational psychology and
forwarded by Sue Buckley, a leading researcher in the field of instruction for students with DS
and an informal advisor to the center (Buckley & Bird, 1993). This philosophy was exemplified
in the expectations they held for tutors, and they modeled this patient and accommodating
persona when interacting with students, parents, and staff at the center. The program staff,
including those who provided the training or served as “mentor tutors” for new staff, employed a
positive and supportive tone when interacting with tutors. An example of this was O’Leary’s
typical greeting when tutors arrived at the center, “So glad to see you today. I know you’re going
to have a great day.” As a result, the overarching aim of the training and ongoing mentoring and
feedback given to the tutors appeared to center on arming them with the requisite knowledge
about Down syndrome and its physical, cognitive, and behavioral phenotype. It appeared that
the center’s staff believed that this was the most important information that tutors needed in
order to feel at ease during their tutoring meetings. For example, during the training, tutors were
advised of the following, “Come to meet your learner in your happy place. This is what you
need for a great session.” This statement implied that a tutor’s positive attitude was the most
important factor in a successful learning experience for the student. There was a noticeable
dearth of training, support, and mentoring in the areas of literacy development and effective
instructional strategies or practices that was specific to literacy.
Initial training. The initial expectations for tutors were outlined in a 45-minute training
session they attended before they were assigned a student and schedule. This group training was
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delivered in a U-shaped classroom setting so the participants could see both the screen and the
presenter. The training was provided by Sandy, a parent of a child with DS and an instructional
aide in a special education classroom. Sandy has been conducting all of the trainings since the
beginning of the LRN program and, along with the tutor Karen, was instrumental in its design.
Sandy stated that she developed the slideshow presentation based on her own philosophy and
knowledge gleaned from her own research, but the presentation included references to the
center’s “guiding principles” for working with students with DS. However, it was not clear from
the presentation which of the elements were Sandy’s philosophy and which were those of the
center. The “guiding principles” as presented in the training are shown in Table 5.

Table 5
Guiding Principles of the Let’s Read Now Program
1. Assume your learner is able.
2. Make it fun.
3. Success is key.
4. Teach…Don’t Test (Errorless Learning)
5. Model…Don’t Correct (Errorless Learning)
6. Let the child set the pace.
7. Start slowly and build

The program’s executive staff observed the training, largely to interact with the new
tutors and determine the best pairings for the upcoming tutoring session. Following the training,
O’Leary stated to the researcher that she learned “a lot about these new tutors, and which child
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will pair best with her.” When asked how she could make this determination based on their
participation in the training, she stated, “I know each of our students, so I can tell which tutor
will work best.” Although Sandy mentioned at the beginning that participants were free to ask
questions throughout the training, only one tutor availed herself of the opportunity, which will be
described later in this chapter.
The focus of the training was more on behavior management than on literacy
development. The majority of the training, approximately 30 minutes of the 45, consisted of an
extended explanation of behavior intervention strategies aligned to the physical, cognitive, and
behavioral profile of students with Down syndrome. Sandy told the tutors the strategies she
would cover in the training are aligned to “scientific research.” Sandy reviewed what she termed
the “ABCs” of behavior intervention: identifying the antecedent, naming the behavior, and
outlining the consequences. However, referring back to the “errorless learning” philosophy,
Sandy said they did not use consequences, as they “believe in the do-over.”
Many of the behavior intervention strategies discussed in the training align to a
behaviorist theory of learning. Behaviorism posits that there is a known relationship between the
environment, event, and behavior (Gredler, 2009). Sandy’s previous example of the ABCs of
behavior intervention aligns to the behaviorist theory. She said when a student misbehaves,
tutors should use the refrain, “Kind hands, kind words, and kind bodies.” She said the students
could memorize this phrase and repeat it back “as their consequence for bad behavior.” She
stated she knows this strategy works because she used it “several times a day” at home with her
own child. Another strategy Sandy reviewed included having each student spray him/herself
with “focus spray” before starting a tutoring meeting, and for tutors to remind them of this at the
outset to be the “alpha dog to reduce behavior problems.” Sandy told the tutors that this practice
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derived from “aromatherapy science” and that all these strategies were “a Pavlovian thing,”
ostensibly in reference to Pavlov’s classical conditioning stimulus-response mechanism
documented in behaviorist learning theory (Gredler, 2009). No questions about behavior were
asked during these sections of the training.
The literacy strategies outlined in the training centered on a cognitive, or information
processing, theory of literacy learning. Cognitive or information processing theory posits that
upon presenting information in small chunks that can be rehearsed or practiced in a repetitive or
sequential fashion called maintenance rehearsal, the learner can then move the information from
working memory to long-term memory so that it may be used for more advanced, or elaborative,
purposes (Gredler, 2009). This theory is consistent with two approaches to early reading
instruction: either a sight word approach that focuses on logographical skills or a phonics-based
approach that builds students’ alphabetic skills in a systematic fashion (Chall, 1983). However,
in this training, Sandy told the tutors that Sue Buckley (Buckley & Bird, 1993) found through her
research that when this theory is applied to students with DS, it proves that a sight word
approach is the best method for teaching reading. Furthermore, Sandy discounted instructional
practices based on phonics or phonological awareness. She stated:
Most of us learned to read by sight, you just don’t remember it. Some people have drunk
the Kool-Aid about phonics. But really, we only use phonics with unfamiliar words. We
read by sight. And reading can only be measured by words read correctly, not by its
parts. That’s why we teach, not test. These kids, science says, are visual learners. Just
shift your mind…only think about the visual cues.
At this point in the training, one of the tutors, Shirley, raised her hand to ask about pre-
testing and assessment of the students. Sandy said that the LRN program does not use a
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formalized, standardized assessment to gauge student learning during the program because the
one-to-one nature of the tutoring allowed for more “ongoing assessment” of progress. However,
this study did not reveal that any ongoing assessment was documented at any time during the
session, though tutors’ conceptions of assessment and progress are communicated to parents
following each tutoring meeting. Shirley, a retired English teacher, then turned to the tutor next
to her and said in a low voice, “I guess that’s what’s different about teaching kids with Down
[syndrome].” Following the training, the program staff held a debriefing session with the tutors.
Shirley shared with the group that she learned how to teach reading during the day’s training,
something she “never had to do when I taught high school English.” The parts of the initial
training that were specific to instruction for either early readers or students with some reading
skills will be described in the respective sections below.
Debriefing meetings. At the end of each day’s tutoring meetings, the tutors gathered for
an informal debriefing meeting with Judy O’Leary, the center’s director of programs. O’Leary
said this time was set aside to allow the tutors to share what they were doing, learn from each
other, and provide tutors with additional “guidance and information that helps them be
successful.” Several of these debriefing meetings were observed during this study.
There was no discernible pattern or objective inherent in the debriefing meetings.
O’Leary usually asked an opening question to get the tutors talking, such as “How did it go
today?” or “Who wants to share out?” During each of the debriefing meetings, at least two tutors
shared what she was working on with her student. In all of the meetings, participation was
optional and only gently encouraged. In addition, only one time was a comment followed up by
commentary from either another tutor or O’Leary. Most of the tutors’ comments focused on how
the book was chosen and how well the student complied with the task at hand, but not once did
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anyone ask any questions following a tutor’s presentation. Karen shared at nearly every meeting
about the beginning reading work she was doing with Pedro, including her use of the
instructional strategies recommended at the initial training.
Continuing with the theme set at the initial training, at each debriefing meeting O’Leary
made comments regarding some of the physical and/or behavioral traits of students with DS and
made attempts to connect them to the tutoring program. However, it was often unclear how
these connected to what she stated was the overall purpose of the debriefing meetings: to share
ideas and to learn how to be more effective as tutors. During one debriefing meeting, Melody
shared about her student. Melody tutors Katie, one of the more social and outgoing students at
the center. Katie, a 13-year-old, was a very sociable student who seemed to enjoy coming to the
center and seeing other boys and girls who attended the LRN program. Katie was frequently
observed hugging other children, getting up from her table to talk to other students, and inviting
them and/or their parents over to her house, even if the child was three or four years older or
younger than she was. When Melody mentioned that she would like to know more about how to
keep Katie focused on the task, O’Leary explained in great detail about the physical constraints
of many people with DS and how they interfere with social communication and developing
friendly or romantic relationships. For instance, she stated, “Kids with DS have highly
developed feelings, but they often don’t know what to do with them.” Following this statement,
O’Leary mentioned that nearly all males with DS are sterile while approximately 50 percent of
females are infertile. This statement resulted in a great deal of murmuring in the room. Several
tutors asked more questions about physical traits of people with DS, and then O’Leary adjourned
the meeting for the day, saying, “This was a great meeting today, girls. See you next week.” As
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a result, Melody’s query regarding how to leverage Katie’s sociability into her lessons was not
addressed.
During an interview with Melody several weeks after this meeting, the issue of how to
best address Katie’s sociability and behavioral needs was the primary topic of conversation.
Although many of the questions and follow-up questions asked by the researcher focused on the
literacy practices she used and the curricular and instructional choices she made, all of Melody’s
responses focused on Katie’s behavior. When asked about what was needed for effective
literacy instruction for students with DS, Melody responded instead with thoughts about
managing the lesson and the student’s behavior:
[During sessions, tutors need] A lot of patience. [Students] aren’t going to get it right
away, and you’re going to have to go over it many times, and they’re going to get
constantly distracted. I think flexibility [is what is needed] because you have to be able
to adapt to any situation or the student’s mood. You have to think on your toes, change
what you are doing to fit the student.
Melody’s response, as well as those to other questions, indicated that she felt overwhelmed by
Katie’s behaviors and felt ill-equipped to address them effectively. When asked about whether
she gets any feedback from the center’s staff, Melody mentioned that the debriefing meetings
helped her learn “what is working with other students,” but that she did not think that the
program was set up for her to receive any feedback on her tutoring effectiveness. Not
coincidentally, Melody expressed only one item that needs to be changed in the LRN program.
She stated that because Katie is so social, it would be better if she had an individual room in
which to conduct her tutoring meetings instead of the large “playroom” where Katie and up to
four other students also have their meetings simultaneously. Melody stated that having a
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separate teaching space would be the single most important factor in improving her tutoring
efforts with Katie.
Summary. Although LRN is a literacy tutoring program, the staff, trainers, and the
tutors themselves spent the majority of their time focused on students’ social-emotional,
physical, and behavioral needs as opposed to their literacy needs. As a result, the tutors
exhibited many of the characteristics and expectations held for them by the program staff
because their instructions and feedback to tutors also centered on the affective domains of
learning that are specific to students with DS. As a result, the primary aim of the training and
ongoing feedback given to the tutors appeared to be to reduce tutors’ fears and anxieties over
working with students with DS by providing them with ample information about the general
characteristics of students with the disorder. There did not appear to be a significant focus on
literacy development and related instructional practices during the initial training or debriefing
meetings.
Elements of Tutoring for Students with Limited Reading Skills
To ascertain a student’s literacy needs prior to enrolling in the LRN program, the center
used a variety of informal measures. The majority of the children served by the program had
been involved in the center’s other activities and programs for many years prior to age 7;
therefore, their literacy skills were known to the center’s executive staff. When a parent wished
to enroll his/her child in the LRN program without previous involvement in the center’s other
programs, the center’s director of programs, Judy O’Leary, met with the parents in person to
discuss the center’s offerings and the student’s current academic and social-emotional
functioning skills. According to O’Leary, she only asked general questions about the child’s
level of academic functioning, and did not require copies of grade reports, Individualized
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Education Programs (IEPs), or any other documentation regarding the student’s current level of
functioning. Although the executive staff at the center expressed an interest to this researcher in
conducting formal pre- and post-testing of students’ literacy skills at the outset and conclusion of
the 10-week program during this study, no formal assessments were administered to any of the
students at any time.
Initial training. During the training, the instructional sequence for working with early
readers was defined as a set of discrete series of steps designed to help kids learn to read words
they encounter in books. The sequence closely aligns to cognitive or information processing
theories of learning, and was described as part of the treatment in several of Buckley’s studies
(Buckley & Bird, 1993, 2000). The trainer, Sandy, explained that the key to this sequence was
errorless learning; tutors were directed not to prompt students to correct a wrong answer or
provide additional instruction once a wrong answer was given. Instead, tutors were instructed to
provide the target word when a student made an error or did not say anything.
The training outlined the steps for providing tutoring to students with limited or no
reading skills. Prior to the lesson, the tutor should select a book that has a limited vocabulary
range and has repetitive syntactical structures. These books are more commonly known as
“predictable books” because students can learn the sentence pattern and mimic it while “reading”
as the book adds new words to each sentence, usually presented on a different page of the book.
After selecting the book, the tutor should make flashcards for the unknown or new words in the
book, creating both word and picture cards for each new word, if possible, as these will be
needed for the instructional phases. The tutor may also create matching activities on worksheets
to use as further reinforcement, if needed. Sandy mentioned that she and Karen have already
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produced a lot of sets of materials for many of the books in the center’s library, so tutors may
want to select books with these pre-designed materials at the outset of the session.
In the first phase of the instructional sequence, the tutor is supposed to read aloud a
predictable book to the student. If the student learns the pattern, he/she should be encouraged to
choral read along with the tutor. As they read, the tutor should have blank flashcards on hand to
write down any words that are unknown to the student, adding to the cards that were created in
advance. In the second phase of the sequence, the tutor should use matching activities with
flashcards to help students learn the target words. The tutor shows the student the picture and
asks him/her to name the target word. If the student cannot read the word or says nothing, then
the tutor tells the student the word; this step of the instructional sequence is designed to reinforce
the concept of errorless learning. Then the tutor should place the picture cards and word cards
face down on the table in mixed rows, and direct the student to play a version of the “memory
game” by asking students to turn over two cards until they find the two that match a target word
(one picture matches to one word). In the third phase, students learn to select the correct word
for each picture or each spoken word while having all of the word cards spread out before them.
For further practice, the tutor should create a worksheet placing pictures and words in opposing
columns, and have students draw lines to connect the matching combinations. And in the fourth
and final phase, students should be shown the word cards by the tutor, and the student should
read each word aloud. This sequence was explained in detail in the training, yet no examples or
models of what this sequence would look like in an actual tutoring meeting were shared with the
group. There were some examples of matching worksheets in the slideshow presentation, but all
that was discernible was that there were pictures on one side of the sheet, words on the other, and
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dark lines connecting two that matched. At no time during this explanation did Sandy stop to
show any actual examples or solicit any questions.
The books chosen for use with this student population did not inform the instructional
sequence of activities that followed. Sandy acknowledged during the training that she “wants to
see more comprehension work” in the tutoring program for early readers, but that currently there
was no explicit focus on comprehension instruction in the program. As a result, the learning
activities were decontextualized because they were removed from the book’s topic and/or plot.
These learning activities would also be classified as simulated learning tasks, as they built upon
discrete skills or concepts presented in the text and were designed to have students practice with
the skill until the student has reached a level of mastery sufficient enough for more advanced
tasks (Langer, 2001; Langer, Close, Angelis, & Preller, 2000).
Tutoring meetings. As described earlier, Karen was one of the tutors normally assigned
to work with early readers. In the adolescent group, only one student, Pedro, was categorized as
an early reader and thus, he was assigned to Karen. To learn more about the instructional
sequence, O’Leary recommended that the researcher observe Karen while tutoring her other
student, Luke, a seven-year-old boy who comes to the center on Tuesdays. Luke had been
coming to the center for three years, possessed early reading skills, and shows “tremendous
potential” to be a good reader, according to O’Leary.
During Karen’s tutoring meeting with Luke, she followed the instructional sequence
exactly as described in the training. For the first phase of the reading, Karen read aloud the book
with Luke. Noticing that Luke was reluctant to get started, as he would not stay seated and kept
looking at the door and around the room, Karen first asked Luke questions about the animal on
the first page of the book, a bird. She praised his answer enthusiastically, then asked, “What is
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the bird doing?” to which Luke replied “flying.” She again praised his answer, then read the first
sentence of the book, “The bird can fly.” They repeated this sequence on each page. If Luke
correctly produced the target word, a verb, she praised him. Immediately afterward, Karen read
the complete sentence aloud, and then moved on to the next page. If Luke did not produce the
target word, Karen said the target word, read the entire sentence aloud, and moved on to the next
page. The book followed the same predictable syntactical structure on each page, “The
bird/bug/bunny/monkey/fish/baby can __(verb)__.”
Even when opportunities presented in which Karen could have built upon the miscues
that Luke produced and taught him the correct way to decipher an unfamiliar word, she adhered
to the instructional sequence. On the second page of the book, Luke seemed to have already
figured out the pattern in the book. When asked, “What can a bug do?” Luke did not
immediately reply. He found the sentence on the page, put his finger on the sentence, and
attempted to read it, saying, “The bug can curl.” However, upon reading the sentence aloud with
the error, Luke scrunched up his face and looked again at the page. Luke’s miscue, or reading
error, on the word crawl revealed that he understood the initial and final consonant sounds, /c/
and /l/. In addition, he potentially knew the initial blend /cr/, although he pronounced it as
/c/+/ur/ instead. In adhering to the instructional sequence, avoiding the use of phonics
instruction and promoting errorless learning, Karen did not provide instruction that would have
allowed Luke to discern the word with assistance. Luke’s error was a graphophonemic miscue
resulting from Luke not producing the medial vowel blend /aw/. He clearly understood that a
verb was the correct part of speech to use there, producing the verb curl instead of crawl, but his
scrunched up facial expression indicated that he realized after he read it that curl did not make
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sense semantically because the word curl did not convey the intended meaning of the larger
sentence.
When asked about the instructional decisions she made during this tutoring meeting
during an informal interview with her immediately afterward, Karen maintained her belief in the
instructional sequence and philosophy that is espoused during the training. Karen stated the
following:
Luke is still learning to read, but he’s really impatient and distracted most of the
time…It’s important that he learn to read familiar words. He doesn’t need to be frustrated
by me taking the time to help him with the sounds. He won’t remember those sounds in
the future, but he’ll remember the word because I put it on a flashcard.
Karen’s response indicated that she may have been concerned that too much instruction might
result in Luke losing focus and becoming disinterested in the lesson. Although she may have
noticed that he was trying to figure out the correct word, Karen appeared to have made her
instructional decision not based on what Luke’s individual needs were at that moment, but on the
larger body of knowledge she has acquired about sight word approaches for students with DS. In
the parent meeting that followed the tutoring, she told Luke’s mother that the method was
increasing Luke’s reading skills. Karen said to his mother, “He is smart. He can figure out the
pattern in the books, and then can read it without even looking at the book. He can also figure
out new words from the pattern.” Karen’s comments indicated that she correlated both prior
knowledge about what animals do and memorization of words and textual patterns to
demonstrable reading skills.
Karen was also observed tutoring Pedro, the older student with little to no reading skills,
on three occasions. Karen explained to me before her first session with Pedro that his parents
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had decided to place him in a general education classroom for elementary school. When Pedro
was about to matriculate to middle school a few months prior to this first session, the school
recommended that Pedro’s parents place him in an “alternate curriculum” classroom since Pedro
could not read. An alternate curriculum is one in which a student’s curriculum and instruction
are defined entirely by the student’s individual needs, and not the state-adopted sequence for
each grade level. According to Karen, Pedro’s parents knew their child had limited reading
skills, but enrolled him in the LRN program to determine “if he was ever going to be able to
read.”
Upon observing Pedro’s first meeting with Karen, Pedro appeared to have no discernible
phonics skills and limited sight word vocabulary. When Karen showed him a table tent with his
name printed upon it, Pedro did not know it was his name. When she asked him if he could write
his name on his book, he said yes. He also said he needed to write the date, which he did
correctly after asking Karen what day it was. It is not clear why Pedro could write his name but
did not recognize it on the table tent when it was written in someone else’s handwriting, as Karen
did not probe any deeper to determine why Pedro could write his name but not recognize it when
printed.
Karen again followed the instructional sequence during Pedro’s first session and all
subsequent sessions, but she rarely was able to get past the second phase, or the matching phase.
Karen told Pedro that she would be telling his parents how many new words he could read at the
end of each session. The first book Karen read was entitled He Runs, a book that appeared to be
handmade and not a published book. As a result, each page had one sentence that began with the
predictable phrase “He runs to __(article + noun)__”. When she was reading aloud the book, she
would read the beginning of each sentence, then pause and point to the picture of an animal or
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object on the page. Most of the time, Pedro would start guessing wildly about what word would
fit into the sentence, without regard for the picture on the page. At times Pedro called out the
correct word, but most of the time he did not seem to understand what the picture was depicting,
as there were no background images on the page. For example, when Pedro was supposed to say
the word cow, he said pig instead, and when he was supposed to say leaf, he said feather.
Karen’s pointing to the picture did not impede Pedro’s view of the words, but he was not
directed to look at them.
Then Karen moved on to the second stage of the lesson, which was to look at the picture
cards and call the name of the animal. However, Pedro again seemed confused by many of the
pictures. The only pictures he recognized were horse, school, wagon, and sucker (target word,
however, was lollipop). Karen placed all the picture cards on the table, and all the word cards in
front of Pedro. Karen’s objective was to have Pedro match the word to the correct picture.
Although Karen sometimes emphasized the initial consonant sound in an attempt to trigger the
student’s memory for the target word, such as the /b/ sound at the beginning of banana, that
strategy was unsuccessful with every picture except pizza, for which Pedro found the correct
word on the second try. When Karen showed him a picture of a robot, Pedro pronounced the
word wobot, mispronouncing the initial consonant /r/ sound as /w/. Karen praised him, saying,
“Good! Robot!” However, Pedro did not find the correct word card for robot until all the other
word cards were matched to pictures, using process of elimination.
During the meeting with Pedro’s parents, Karen recounted her activities. She told them
that Pedro guesses when he looks at pictures, and guesses at matching picture cards to word
cards. Karen told them that Pedro needs to learn the “high-frequency sight words…the, a, an, I,
me.” Pedro’s mother said his teacher is giving him six words a week to memorize, but that to
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date Pedro has been unable to memorize any of them and she does not know how to teach him
how to memorize. Karen also mentioned to the parents that Pedro seemed unfamiliar with initial
sounds in words, but she did not expound further on this fact nor did the parents ask any
questions about it.
During subsequent observations, Karen continued to adhere to the instructional sequence,
even when the words in a particular book would have lent themselves to teaching phonemic
awareness to aid Pedro’s reading skills. In one book, the words in, is, and it were used.
Although Karen wrote each of these words on flashcards, she made no attempt to teach Pedro the
similar sounds or patterns among these words. When she was playing the matching game with
word and picture cards, her over-pronunciation of the initial consonant sound, such as when she
said rrrrrrobot and llllllllleaf appeared to be more of a memory device rather than an element of
phonics instruction. When asked about this instructional strategy after a tutoring session, Karen
confirmed this by saying, “By saying the first letter, like pah before pencil, it could help him
remember which card has the word pencil on it.” Karen’s statement reveals that her
instructional strategies focus on either auditory or visual memory activation, rather than
graphophonemic features of words. Not once during any of Karen’s tutoring sessions did she use
phonics instruction or graphophonemic cues as a way to help Pedro read words, as her methods
focused exclusively on memorization.
At the end of ninth week of the session, just before the last session, Karen shared with the
researcher in an informal conversation that she felt the program had been a success for Pedro.
Karen stated, “Pedro can now read 12 words, and at the beginning he couldn’t read any words.”
The researcher then asked what words Pedro could now read, and Karen replied, “He can read so
many words: is, ball, umbrella, a, the, an, I, and a few others.” When asked how Pedro learned
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that particular group of words, Karen replied, “These are the words from our books.” Although
this response did not directly answer the researcher’s question, Karen’s statements indicated that
she believed her methods were the reason for Pedro’s improved reading. But since many of the
words that Pedro can now “read” are not related to each other in terms of their phonemic,
semantic, or syntactic similarities, it appears that Pedro has learned to recognize these words
through sight word approaches focused on building Pedro’s visual memory and automaticity.
Summary. Students with little to no reading skills were provided with direct instruction
using a series of simulated learning activities that utilized a sight word approach. The center
placed them with tutors who focused their instruction on building sight word vocabulary gleaned
from predictable books, and any references to phonics or graphophonemic cueing systems were
used as ways to activate students’ memory. No direct instruction or assessment on phonics,
comprehension, or fluency was observed during the tutoring meetings. The words selected for
study did not follow any patterns regarding phonics, parts of speech, or syllabication, even when
the words selected for study may have had patterns that could have aided the students with their
reading. The majority of time during these tutoring meetings was focused on activities designed
to help students memorize words from the text through a series of decontextualized tasks that
were repeated during each tutoring meeting.
Elements of Tutoring for Students with Reading and Writing Skills
For students who could read with automaticity, accuracy, and/or fluency that were
somewhat commensurate with their grade level, no direct instruction in any of the literacy
domains was observed during the tutoring meetings. The instructional emphasis was on helping
the students enjoy reading by having them read aloud from books of their own choosing or
listening to the tutor model good reading during read alouds. These tutoring meetings
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incorporated some oral discussion and writing about the text, but those activities were secondary
to the read alouds, were not tied to a specific instructional objective based on student need, and
did not increase in complexity from meeting to meeting.
Initial training. During the initial training, very little was said in reference to tutoring
students who could already read with some automaticity, accuracy, and/or fluency. During this
section of the training, Sandy stressed the need for tutors to take their instructional cues directly
from the students and their parents. She advised tutors to work collaboratively with the parents
to set “reasonable goals” for each tutoring meeting. She encouraged them to choose books and
activities that were “appropriate for students…in their comfort range” to keep them motivated to
read, stressing that “what you use is less important than how you use it” and “something is better
than nothing.” At the end of this section of the training, Sandy gave one last piece of advice,
saying that if the tutors can get in 10 minutes of “quality literacy time” in the 45-minute meeting,
then that would be considered a successful session. However, Sandy did not define what is
meant by “quality literacy time.” She concluded the training on this topic by saying, “But it isn’t
a failed session if they only read for 3 to 5 minutes.”
As a result, very little of the training was devoted to tutoring sessions for older students
with more reading skills. This smaller emphasis on this student population may account for the
wider range of activities and approaches used by tutors who worked with this population. Since
“quality literacy time” was not defined in the training, it appears that tutors were at liberty to
define this using their own criteria. In addition, since there was no supervision of the tutoring
sessions nor feedback given to tutors on their effectiveness at any time during this study, it is not
clear to what extent the program is organized for the older students.
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Tutoring meetings. Each tutor or pair of tutors who worked with students who
possessed some reading and writing automaticity, accuracy, and/or fluency used a completely
different approach with her student. Observations of the tutoring meetings demonstrated this
wide fluctuation in styles and approaches, and comments made by the tutors during interviews
validated the findings from the observations. All of the tutors for this group of students were
future teachers enrolled in undergraduate programs that lead into a master’s degree-level
teaching credential program in either elementary education or special education. Although each
of them demonstrated many of the management skills necessary for connecting with their
students in ways that promote learning and growth, such as frequent reminders and linking
activities to time frames to stay within a schedule, each of the tutors expressed frustration that
they needed more support in deterring inappropriate behaviors or in decreasing task avoidance
behaviors. However, none of the tutors observed and interviewed for this study expressed any
concerns about their knowledge and application of literacy theory, development, strategies, or
practices that might improve their students’ literacy skills.
Melody, one of the tutors mentioned earlier in this chapter, was assigned to tutor Katie, a
13-year-old girl who has been coming to the LRN program since its inception. Melody has been
Katie’s tutor for three consecutive 10-week sessions, and she has also worked in the center’s
summer enrichment programs in cooking and art, so her relationship with Katie appears to be
well developed.
Melody was observed tutoring Katie on three separate occasions, and the instructional
sequence Melody employed was nearly identical during each meeting. Melody began each
meeting by asking Katie if she remembers what they covered the previous week. Melody’s
responses were usually limited to one or two words, usually in reference to the characters in the
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book they were reading, an abridged version of the L. Frank Baum novel The Wonderful Wizard
of Oz (1900) that included many of the illustrations from the original novel. At the beginning of
each tutoring meeting, Melody asked a series of cloze, yes/no, or multiple choice literal
comprehension questions designed to help Katie remember the key elements of the plot.
Questions and cloze stems included, “ Dorothy and Toto live on a…” “Was their house taken
away by a cyclone or a fire?” and “Do you remember what road she had to take to get to the
Emerald City?” Katie was nearly always able to complete the cloze questions correctly,
providing the target/missing word or short phrase when prompted. She was also always able to
provide the correct answer when given a choice between two options, but that may have been
due to the fact that the incorrect option was usually far-fetched and was always the second
choice, such as the example above. However, when asked a yes/no question, Katie always
responded with either “maybe” or “no.” Melody continued to ask these yes/no questions at the
beginning of each tutoring meeting, sometimes even repeating the identical yes/no questions
asked the previous week, yet Katie never produced a “yes” answer. When asked about why she
uses this questioning strategy at the beginning of the session, Melody replied that she just wanted
Melody to feel comfortable and get ready to read. Melody did not indicate that this practice had
an instructional focus that was tied to literacy development.
Katie’s oral reading and comprehension did not change much during the three tutoring
meetings observed for this study. Her oral reading demonstrated that Katie experiences
difficulty reading with prosody. Katie’s oral reading was observed on three occasions, and each
time her oral reading was halting and staccato. Her intonation was flat and largely unresponsive
to any semantic or syntactic cues, except she usually lowered her voice and changed her tone for
the word immediately preceding a period. During the training, the tutors were taught that these
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oral reading characteristics are related to physical, speech, and cognitive impairments among
students with DS. Yet, these traits are often shared by many students in early adolescence who
do not read at grade level (Fuchs, Fuchs, Hosp, & Jenkins, 2001).
When she miscued on a word, Katie’s errors were usually graphophonemic, but
occasionally they could be attributed to semantic misunderstandings in addition to
underdeveloped phonics skills. An example of this was when Katie read sadly instead of
suddenly. She replaced the word suddenly with another adverb, sadly, but she did not recognize
that sadly did not make sense semantically within the sentence. As a result, Melody read aloud
the word suddenly immediately after Katie miscued on the word. Most notably, Katie almost
always miscues on words with more than two syllables, upon which Melody gives her the correct
word.
Following a miscue, Katie usually asks a question that is designed to avoid the reading
task. For example, Katie was often observed asking to get water or asking if she can stop
reading, approximately five to seven times during each meeting. Approximately every 2-3
minutes during each of the meetings observed for this study, Katie engaged in some sort of task
avoidance behavior, such as looking away from the book, asking a question, touching items on
the table, or putting her head down or on Melody’s shoulder. Melody used a variety of strategies
to keep Katie focused, such as offering to read whole pages, setting time limits for reading, or
promising rewards such as looking at things in Melody’s purse at the end of the meeting. But
many of these strategies only further reduced Katie’s time on task. Hence, these task avoidance
behaviors often resulted in Melody allowing time for one of Katie’s preferred activities instead
of the non-preferred activity of reading instruction.
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After the read aloud, which usually comprised 15-20 minutes, Melody structured the time
to review the plot and engaged in a short reading comprehension activity that used writing.
Every session, Melody provided Katie with a worksheet that had a drawing of a scene from the
part of the book they just read (see Appendix E for a sample of one such activity). She asked
Katie to remember what they just read, using the picture as a comprehension scaffold. Melody
referred to the picture and other pictures in the book frequently, but this activity usually lasted no
more than four minutes. For the final activity, Melody asked Katie to write a sentence under the
picture to describes what was happening in the image. Melody asked a lot of prompting
questions to get Katie to begin writing, and even repeated sentences from their discussion that
could have been used for the writing task. Yet only on one occasion did Katie finish writing her
sentence. On that occasion, Katie began the sentence when prompted, but after writing each
word she engaged in another off-task behavior such as, “What’s your favorite color?” or “Can I
go get a drink of water?” During the next tutoring meeting, Katie asked if she could color the
drawing first, another preferred activity, which resulted in no remaining time for writing the
sentence. On that day, since Katie never wrote her sentence, Melody asked Katie to finish the
worksheet at home and bring it back the following week, and Melody gave these instructions in
front of Katie’s mother. Katie completed the assignment and brought it back for the next
meeting, but Melody only thanked Katie for completing her work. No follow-up instruction
using the worksheet was observed.
It is apparent from the observations that Katie engaged in a significant amount of task
avoidance behaviors because independent reading was not easy for her nor was it a preferred
activity. Although Melody utilized many motivation-related strategies to keep Katie progressing
through the lesson, most of the strategies used were irrespective of the literacy demands
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presented by the text. Melody seemed very concerned about Katie’s off-task behaviors
throughout the observations and during interviews following the sessions. Yet, Melody did not
indicate that she had knowledge of any literacy-based instructional strategies could have been
utilized that may have increased Katie’s reading skills and lowered her frustration, or affective
filter, when completing literacy tasks. Instead, Melody used strategies that could be
characterized as extrinsic motivation, those that did not increase Katie’s sense of efficacy when
completing literacy tasks but instead provided incentive for Katie to finish the task to receive a
reward that was disconnected from the learning. It appeared that Melody’s reliance on extrinsic
motivation techniques did not result in a noticeable change in either Katie’s literacy skills or
behavior.
Similarly, the three other tutors who worked with students with some reading ability also
placed a heavy reliance on task completion through the use of extrinsic motivators rather than on
deepening students’ literacy knowledge or increasing their literacy-based self-efficacy.
Examples of how each tutor conducted their tutoring meetings will be explained in detail below.
Melissa was the tutor for Daniel, a 15-year-old boy who was homeschooled by his
mother. Melissa had been tutoring Daniel for approximately one year prior to this study. At the
outset of the 10-week session, Daniel had surgery to correct a spinal defect and he had difficulty
navigating the stairs at the center. As a result, he missed more than half of the sessions due to
follow-up medical appointments or other issues related to his surgery. Although only one
tutoring meeting between Daniel and Melissa was observed during this study due to Daniel’s
medical issues, an interview with Melissa revealed that the session observed was nearly identical
to the others. Thus, the findings from that observation are included in this analysis.
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During the tutoring meeting, Melissa also utilized many of the same strategies that
Melody used in her meetings with Katie. Melissa stopped frequently during the session to offer
Daniel minutes of preferred activity time in exchange for reading a passage without stopping or
for asking a “good question” while reading. However, the criteria for length of reading and
“good questions” could not be discerned, as they varied throughout the session. Daniel’s
preferred activity was he could spend time on his iPad and thus, subtract minutes from the
tutoring session. Melissa chose largely nonfiction reading materials based on Daniel’s interest in
American presidents and related historical events. During the meeting observed, Daniel read
aloud from two different texts, one about Abraham Lincoln and one about the Reconstruction
era.
Daniel’s oral reading skills were similar to those of Katie. His oral reading lacked
appropriate prosody, in that his intonation remained constant while reading. Daniel, however,
did not always attend to punctuation, sometimes reading sentences as if they were connected
instead of separate. Daniel’s regular speech had a similar prosody as that of his oral reading, so
when he would interject with a comment or question, Melissa did not always recognize when he
was doing so. In contrast to Katie, Daniel made few miscues while he read aloud, and when he
did he almost always went back and self-corrected his mistake. On those rare occasions, Melissa
either said the correct word, or she ignored the miscue. Given Daniel’s frequent interjections,
often to relate an interesting fact or to comment on what was just read, Melissa stated she felt it
was necessary to offer a reward to encourage him to keep reading. Similar to Melody, the tutor
who experienced difficulty when redirecting Katie to the task at hand, at no time was Melissa
observed redirecting Daniel by utilizing an instructional strategy connected to literacy skill
building. When interviewed, Melissa indicated that she chose texts for Daniel based on his
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interests, not his reading level. She acknowledged that the texts were not written at a challenging
level for Daniel, but she stated she chose them for the following reasons:
[I choose these texts] because he will stay engaged. These texts make him excited, they
make him want to come to tutoring…I feel bad that he’s been through so much recently.
I just want him to be able to do some things that he wants to do, like read history and play
on his iPad.
As a result, Melissa spent the entirety of each tutoring meeting listening to Daniel read
aloud, watching him read silently, or responding to his questions about the text. Any time that
would have been left over for a discussion led by either Melissa or a writing activity was
bartered away in an attempt to keep him engaged. In a follow-up interview, Melissa revealed
that she was willing to let Daniel’s interests drive the instructional plan for each session. She
stated, “Daniel is so easily distracted, so when he wants to do something that helps him stay
interested in whatever we are reading, I usually let him do that.”
However, during the tutoring session observed for this study, Daniel was observed to be
highly focused on the reading task and related tasks. For example, when Melissa allowed Daniel
to look up an item about Abraham Lincoln after reading aloud instead of beginning the writing
task, Daniel did not appear to want to do so in an attempt to avoid reading the remainder of the
text. Following his research on the Internet, Daniel talked to Melissa about what he learned.
Daniel said, “I just read that Lincoln had a feeling he would be killed in a public place. The
book said he was caught by surprise.” However, after Daniel made this connection between the
book and the Internet research, Melissa did not ask Daniel to capture those thoughts in writing.
Given Daniel’s high interest in reading about Lincoln, it appears he would have complied with
Melissa’s request to have him write about Lincoln, particularly if he could draw upon facts he
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learned online or in the book. Similar to Melody, the tutor for Katie, Melissa mentioned during
her interview that she wished she had more time to work on strategies that would keep Daniel
focused during tutoring sessions, but Melissa did not mention needing additional support with
literacy instruction.
The two tutors assigned to work with Gregory, a 16-year-old boy who is on a diploma-
track program at his high school, also did not demonstrate knowledge of literacy strategies that
would help Gregory improve his literacy skills. The center’s executive staff mentioned how
difficult is can be to provide appropriate literacy instruction for Gregory, since he is now in high
school and can read, write, and communicate in ways that are appropriate for high school. The
center has been contracted by Gregory’s school district to design modified curriculum and
assignments for him so he can participate in general education classes for most of the school day.
O’Leary states that Gregory can usually complete the reading and writing tasks assigned by his
teachers, but he needs to work at a slower pace and complete assignments in smaller chunks, and
with direct assistance from his parents or tutors. When Gregory comes to the LRN program,
O’Leary said she instructs the tutors to “practice what Gregory would normally be asked to do in
an English class, but instead with books that he likes.” As a result, for this session Gregory was
placed with Michelle and Hannah, two tutors who were new to the center but had experience
tutoring high school students in English.
Michelle and Hannah were observed tutoring Gregory two times for this study. On both
occasions, Gregory brought a book he was reading at home for pleasure: once it was a fictional
book based on the Star Wars films and the other time it was a book about robots. Gregory told
the tutors he did not like to read aloud, so during both tutoring sessions he read silently or told
the tutors that he did the reading before the session. Indeed, before one of the tutoring sessions,
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Gregory was observed in one of the rooms at the center, reading aloud from the book about
robots with his mother. For the first 10-15 minutes of each session, Gregory told his tutors what
the book was about. Usually Hannah could be observed flipping through the pages of the book
while Gregory talked, but only once did she ask him a question about something about the book.
Michelle and Hannah decided in advance of both sessions to engage Gregory in an
extended writing assignment during each of the tutoring sessions observed. During the first
session, Michelle asked Gregory to write a paragraph about what he “read about in the book.”
Noticing that Michelle’s directions were not specific to any particular section of the book,
Gregory asked a clarifying question, “Which part of the book do I have to write about?” Hannah
responded that he should write about the chapter that he is currently reading. Gregory picked up
the book and flipped to the current chapter, as he had a bookmark at the page where he left off.
He proceeded to re-read sections of the chapter for about three minutes. During this time,
Hannah took out lined paper and Michelle took out pencils, getting up to sharpen a few pencils
from the box. After three minutes had elapsed, Gregory requested one more minute to review.
While Hannah and Michelle whispered to each other, Gregory was observed glancing at them
over his book. The writing activity consumed the remaining 20 minutes of the session, during
which time Gregory produced four sentences about the book. Hannah and Michelle offered
supportive comments while Gregory was writing, such as, “Wow, that’s great. Now write
another sentence.” At no time did the tutors ask any questions designed to encourage Gregory to
improve his writing, nor did they offer any support for writing the sentences. On one occasion,
Gregory asked the tutors how to spell the word aggressive, to which Hannah slowly spelled the
word aloud as Gregory wrote it.
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Following the tutoring meeting, the researcher examined the work Gregory had produced
prior to the meeting with his mother. Gregory wrote four sentences, but they were not written in
paragraph form. Each sentence started at the left margin, and each was a simple sentence with a
single subject and predicate, such as Luke bougth[sp] the droids from the Jawas. Although two
of the sentences had spelling errors, the errors were fairly typical misspellings. The sentences
did not appear to follow any chronological order within the book, nor did they all appear to be
from the chapter that Gregory was describing in his oral retelling at the beginning of the meeting.
When the tutors met with his mother, they appeared to change the assignment they gave to
Gregory to fit with the work that he produced. Deviating from their original instructions, the
tutors told his mother that they asked Gregory to write four sentences about the book, and not the
paragraph as he was originally instructed. The tutors praised Gregory for his writing, as
Michelle said to him in an exaggerated tone, “This is great, Gregory. You wrote four whole
sentences. They are really great sentences.” Gregory’s mother asked if he paid attention
throughout the meeting, and Hannah replied that Gregory gave them “no problems” at all. She
also said that they “loved tutoring Gregory because he is so smart.”
Gregory seemed very interested in talking about the books, as evident from his insistence
on extending the time he spent reviewing the plot of the Star Wars book during one session and
him stopping during the writing activity to explain more information about robots during the
other session. Yet, from the observations of the tutoring meetings and an interview with Hannah,
it appeared that the tutors did not know to what extent they should provide writing instruction to
Gregory. Hannah stated that when she tutors “other high school kids, I help them with writing
topic sentences for their paragraphs.” Hannah stated that Gregory’s mother asked her to help
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him with his writing, but that Hannah felt she needed to promote the concept of errorless
learning during her tutoring. She stated the following:
I would like to know more about how to help Gregory without telling him how to do it.
We just accepted whatever he wrote down, and only helped him when he asked for it. I
think the most important part is making him feel happy that he is making progress.
Similar to both Melody and Melissa, the other two tutors who work with adolescent students
with reading and writing abilities, Hannah’s comments revealed that she and Michelle placed
their instructional emphasis on Gregory’s level of comfort with the assignments he was given as
opposed to the level of rigor expected in his writing. When asked if she received any feedback
on her tutoring, she said O’Leary told her to make sure Gregory is enjoying the lesson, so she
said that is what she and Michelle focused on throughout the 10-week session.
Summary. The tutoring program for students with some reading automaticity, accuracy,
and/or fluency appeared to be based more on the center’s philosophy of behavior support,
motivation, and self-efficacy rather than an approach to improving literacy skills for this
population. In each of the cases, the tutors mentioned aspects of the training that pertained to
behavior management as the basis for how they designed their lessons. This focus appeared to
be related to the fact that very little was addressed in their training that was pertinent to tutors
who work with students with more advanced literacy skills. The tutors relied largely on extrinsic
motivators to get students to attend to the task, which resulted in a shortened number of
instructional minutes during each of the tutoring meetings observed. On average, each tutor
spent about 10-15 minutes on either student oral reading or tutor read aloud, five minutes on
literal comprehension questions or questions designed to gauge students’ opinions of the books,
and five minutes on writing activities. The writing activities appeared to be the most impacted
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by students’ task avoidance behaviors. The findings related to the first research question are
summarized in Table 6, below.

Table 6
Summary of Curricular and Instructional Elements of the LRN Tutoring Program
Element Finding
Tutor-tutee pairings Most students are paired up with one tutor for the 10-week
duration of the program; most tutors have no experience
teaching literacy to students with DS or other disabilities;
focus of the pairings is on building positive relationships
between tutors and students
Literacy Instruction –
Early Readers
Literacy instruction was based on visual memory strategies
designed to increase students’ sight word vocabulary
Literacy Instruction –
Experienced Readers
Literacy instruction was based on read alouds (by tutors or
by students) with some oral discussion and/or writing
activity designed to build literal comprehension
Support for Student Behavior The staff and the tutors place a high priority on managing
inappropriate behaviors; much of the ongoing support for
tutors and their work centers on behavior management and
intervention
Errorless Learning Philosophy The belief that students are more capable of learning when
students’ errors are considered a natural part of the
learning process; in practice, tutors and staff correct
students’ errors and do not utilize students’ errors as
“teachable moments”

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Research Question 2: Elements of the LRN Program That Align to the Research
The findings related to the first research question, which established the observable
elements of the LRN literacy tutoring program, revealed that although the practices inherent in
the program align to research, those practices represented a narrow slice of the vast body of
knowledge on effective literacy practices and effective tutoring programs. Furthermore, the
practices utilized in the program that were specific to developing literacy skills among students
with Down syndrome reflect older research from the 1980s and 1990s. Much of that research
has since been disproven and/or replaced with more recent research indicating that students with
DS or other moderate-to-severe learning, cognitive, or intellectual disabilities can be taught
reading skills using many of the research-based practices found effective for nondisabled
students or students with mild-to-moderate learning disabilities. And although recent research
shows promise for utilizing instructional accommodations and modifications when implementing
literacy strategies for students with moderate-to-severe learning, cognitive, or intellectual
disabilities, the LRN program did not make consistent use of these strategies in its tutoring
meetings.
Summary of Findings from Data Analysis
Three main findings summarized in concise form below answer the second research
question:
1. Caring and dedicated tutors. The program placed its main instructional priority on
providing students with caring and dedicated tutors who demonstrated that they want
students to feel supported in their efforts to learn to read.
2. Sight word approaches for teaching reading. The program’s executive staff and
those providing training to the tutors espoused the belief that sight word reading
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accompanied by occasional literal comprehension questioning was the most
appropriate method for teaching students with DS and other intellectual disabilities to
read.
3. Simulated learning tasks. The instructional sequence used during most tutoring
sessions was dominated by teacher-led simulated learning tasks.
Caring and Dedicated Tutors
The program placed its main instructional priority on providing students with caring and
dedicated tutors who demonstrated that they want students to feel supported in their efforts to
learn to read. This finding connects to the research by Shanahan and Neuman (1997) on the
attributes of tutoring programs that produce gains in reading achievement, one of which is the
value of the interpersonal qualities of tutors that help students feel supported and motivated to
learn to read. Furthermore, this finding is supported research by Worthy, Prater, and Pennington
(2003) on the necessary elements of effective literacy tutoring programs, one of which is the
level of commitment displayed by tutors.
The analysis of examples described above that answers the first research question
demonstrates that the center’s staff placed a high value on the interpersonal relationship that was
developed between tutor and tutee (student). The amount of time that the staff was observed
discussing the physical and behavioral profile of students with DS, both during the initial
training and the debriefing meetings, indicated that this was an area of strength for them. The
comments made during the tutors’ interviews also demonstrated that they felt they needed to be
more concerned about managing student behavior and keeping students focused and engaged
than on the actual literacy skills they taught or reinforced during their lessons. Their comments
further illustrated the limited value the center placed on elements of reading instruction more
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commonly used in core and supplemental instruction, as the tutors did not talk about literacy
when they described how they approached preparing for and implementing their lessons during
any of their interviews with this researcher. In addition, the dearth of information and support
provided to tutors in the areas of literacy development and literacy-based instructional practices
revealed that literacy improvement was, at best, a tertiary goal of the LRN program. Instead, the
LRN program is focused on helping students want to read and connect with an adult who will
help them get motivated to read.
Although the trait of the caring and dedicated tutor is often cited in the research on
effective tutoring programs (Shanahan & Neuman, 1997; Worthy, Prater, & Pennington, 2003),
no clear causal link has been established between this trait and the overall effectiveness of a
literacy intervention program. The finding from this study about the value the center placed on
the interpersonal characteristics of tutors did not figure as prominently in the research as the
value of tutors needing to possess a large knowledge base in the areas of reading, literacy, and
language acquisition and in the variety of literacy-based instructional practices that stem from
established learning theories (e.g., behaviorism, constructivism, socioculturalism). However, in
contrast with the literature on effective literacy tutoring programs, the LRN program staff does
not recruit tutors who already possess training and/or knowledge of reading, literacy, or
language. Additionally, the training was not centered on equipping tutors with the requisite
knowledge of literacy development and pedagogy prior to beginning their tutoring sessions.
Conversely, none of the literature reviewed for this study found a relationship between literacy
improvement tutors’ use of behavior intervention and management strategies, although this study
found that the program places a significant emphasis on this element of instruction. As an
example, the LRN staff spent a considerable amount of time training tutors on behavior
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intervention strategies and discussing more behavior management strategies with them
throughout the session.
Sight Word Approaches for Teaching Reading
The program’s executive staff and those who provided training to the tutors espoused the
belief that sight word reading accompanied by occasional literal comprehension questioning was
the most appropriate method for teaching students with DS and other intellectual disabilities to
read. Helen Jansen, the center’s executive director, stated during interviews that research
“overwhelmingly supports the use of sight word reading.” She said her belief is supported by
“recent research” and she also said, “I can’t understand why school districts don’t follow
research.” However, a review of literature for this study revealed that most research on sight
word approaches and students with DS was conducted in the 1980s and 1990s (Bradley &
Bryant, 1983; Browder & Xin, 1998; Buckley & Bird, 1993; Cossu, Rossini, & Marshall, 1993).
She also maintained, “In our experience, most of our kids will be successful with our
methodology.” Jansen did admit, however, that when students have not responded to this
methodology in the past, she has brought in published curricula from the school district where
she teaches and has recommended its use with students. However, she declined to state the name
of such programs.
The center told its parents and tutors that its methodology was based on research by Sue
Buckley (Buckley & Bird, 1993). However, that 20-year-old research has now been usurped by
more recent studies that have broadened the types of interventions used with students with DS.
The tone used by Sandy as she delivered the initial training, when she explained how some have
“drunk the Kool-Aid on phonics,” demonstrated that the center and the LRN program
discouraged the explicit teaching of phonics during tutoring and favored the use of sight word
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approaches. But in writings Buckley published after the National Institute of Child Health and
Human Development’s report of the National Reading Panel, outlining the five elements of
effective reading instruction (2000), Buckley adopted a broader interpretation of literacy than
what she espoused previously (Buckley & Bird, 2000). In interviews with the tutors, none of
them mentioned Sandy’s comments on phonics-based approaches, nor did they mention them as
part of their instructional design.
Yet, this study did not indicate that the center has incorporated this newer research into
its LRN program. The NICHHD report (2000) did not find any statistically significant studies
validating the reliance on sight word approaches; subsequently, research in the United States
over the past decade using that approach has been extremely limited and/or nonexistent because
it has not been eligible for federal funding. Although the research on providing instruction to
students with moderate-to-severe disabilities is extremely limited, particularly in the United
States, the majority of the current research examines the role of strategies more commonly used
with nondisabled students or students with mild-to-moderate learning disabilities. The reliance
on sight word approaches in the LRN program was not reflective of the research of the past
decade that shows promise in providing instruction to students with DS that blends phonics,
comprehension, and instruction in other literacy domains with sight word approaches (Cardoso-
Martins & Frith, 2001; Moni & Jobling, 2001; Boudreau, 2002) or that teaches phonics skills and
decoding systematically (Gombert, 2002).
Simulated Learning Tasks
The instructional sequence used during most tutoring sessions was dominated by teacher-
led simulated learning tasks. These tasks usually followed a student’s oral reading of a book or
the tutor’s read aloud of a book for less proficient readers. Occasionally during read alouds and
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oral readings, tutors asked literal comprehension questions. But these appeared to be designed to
ensure that students were attending to the story, such as “Who did Dorothy meet on the yellow
brick road today?” or “Who shot Lincoln?” Most of the time, these literal comprehension
questions followed the reading and preceded and a short writing exercise designed to determine
if students “got the gist” of the text. Although simulated learning experiences are recommended
as part of effective literacy instruction for adolescents (Langer, 2001; Langer, Close, Angelis, &
Preller, 2000), these types of tasks are recommended to be part of a more comprehensive
program that also teaches skills in both separated, direct instruction learning activities and
integrated, conceptual tasks.
Simulated learning tasks are typically based on cognitive theories of learning. The
literacy strategies outlined in the training centered on information processing theory, in that
students were expected to commit certain pieces to their long-term memory following a sequence
of activities designed to leverage their working memory. Information processing theory posits
that upon presenting information in small chunks that can be rehearsed or practiced in a
repetitive or sequential fashion called maintenance rehearsal, the learner can then move the
information from working memory to long-term memory so that it may be used for more
advanced, or elaborative, purposes (Gredler, 2009). In an instructional sense, the information
would need to be taught in a separated, or isolated, fashion before students could engage in the
maintenance rehearsal inherent in simulated learning activities. In addition, the advanced or
elaborative purposes would be in the form of integrated learning tasks, those that require students
to use information in a more extended or conceptual manner.
However, during the tutoring meetings that were observed for this study, tutors did not
encourage elaborative rehearsal or utilize integrated learning experiences, nor did they avail
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themselves of opportunities to provide separated learning activities designed to teach individual
skills or concepts. For example, when students miscued on words during their oral reading,
spelled words incorrectly while writing, or did not adhere to proper format for writing a
paragraph, the tutors did not provide any targeted, separated instruction that would have helped
students correct their error or learn skills and strategies that would prevent the same error from
occurring again. For example, when Gregory wrote Luke bougth[sp] the droids from the Jawas,
one of his tutors, Hannah, asked Gregory to read aloud the sentence. Although he read aloud the
word bought correctly, the tutors did not call attention to the spelling error or offer any targeted
instruction. These opportunities are referred to in the research as “teachable moments,” but
when tutors fail to capitalize on them, they are missed opportunities to provide contextually
based, strategic instruction.
Summary
Although the practices inherent in the program aligned to research, they were a small
representation of the extensive research on effective literacy practices and effective tutoring
programs. Furthermore, the practices utilized in the program that were specific to developing
literacy skills among students with Down syndrome reflected research from 20-30 years ago that
has largely been disproven and/or replaced with more recent research indicating that students
with DS and other moderate-to-severe learning, cognitive, or intellectual disabilities can be
taught reading skills using many of the research-based practices found effective for nondisabled
students or students with mild-to-moderate learning disabilities. The findings from the
observations of the tutoring sessions, trainings, and debriefing meetings with the tutors, in
addition to findings from the interviews with tutors, indicated that most of the staff members
associated with the program were aware that they placed more of an emphasis on affective
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elements of the LRN program than on elements of effective literacy instruction. The executive
staff’s decision to allow this researcher to analyze elements of its program, which would include
recommendations for how the program could better utilize the recent research on literacy
instruction in its LRN program, indicated that they appear to be interested in changing the nature
of the program. Chapter 5 will present conclusions drawn from the findings and outline
recommendations for the LRN program that could be used for that purpose.

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CHAPTER 5
CONCLUSIONS AND RECOMMENDATIONS
Research on literacy tutoring programs, both those for disabled and nondisabled
populations, indicates that most tutoring programs have demonstrated success with remediating
delayed reading skills (Osborn, Freeman, Burley, Wilson, Jones, & Rychener, 2007; Shanahan,
1998; Worthy, Prater, and Pennington, 2003). Programs that are effective embed three criteria:
1. Knowledgeable, motivated, and caring tutors who build rapport with students in ways
that help students learn and retain reading/language arts skills (Shanahan, 1998).
2. Curricula that teach skills in separated, simulated, and integrated ways to bridge
academic learning to real-world applications (Langer, 2001; Langer, Close, Angelis,
& Preller, 2000).
3. Instructional strategies that are designed to increase reading accuracy,
comprehension, and independence (Askew, Fountas, Lyons, Pinnell, & Schmitt,
1998; Elbaum, Vaughn, Hughes, & Moody, 2000).
Because much of the research identifies what works in literacy tutoring programs without
much insight into why it works, this study capitalized on the published body of research by
identifying areas in which the LRN program can implement more of what research has
established as effective literacy-based pedagogies into the current program.
Two main conclusions about the Let’s Read Now (LRN) literacy tutoring program were
drawn from these three aggregate criteria regarding effective literacy tutoring programs. The
themes and findings presented in Chapter 4 emerged from an analysis of data from observations
of tutoring sessions, interviews with tutors and program staff regarding the use of literacy
theories, strategies, and materials that are designed to improve literacy skills, and a close reading
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of program documents for the LRN program. Stated below in concise form, each conclusion was
explored in depth with connections to the literature base and was further reinforced by key
recommendations for the LRN program:
1. Although the LRN tutors and the staff of the Down Syndrome Learning Center were
motivated and caring individuals who built rapport with their students, the gaps in
their knowledge of literacy development, curricula, and pedagogies that could help
students learn and retain reading/language arts skills, particularly those demonstrated
to be effective for students with Down syndrome and other moderate-to-severe
learning, cognitive, and/or intellectual disabilities, were significant. Most of the
features of effective literacy instruction, which include separated or directed
instruction in reading and writing skills as well as integrated reading and writing tasks
that approximate real-world applications, were not in evidence during the tutoring
sessions observed for this study. As a result, the impact of the LRN program on
students’ literacy development could not be discerned in its current state. The
program could be structured in a manner in which tutors are expected to draw upon a
variety of curricular materials, pedagogical methods, and instructional strategies to
help students address their reading difficulties in order to ascertain the connection
between the LRN program and reading achievement. The implementation and use of
both formative and summative assessments during each 10-week session could
further assist tutors and staff in determining students’ literacy growth.
2. There was little evidence of ongoing supervision of instruction or mentoring that was
focused on effective literacy pedagogy in the LRN program. The center’s staff
focused more on whether students left each tutoring meeting happy and on whether
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parents felt that their students would be able to persist through more reading and
writing activities at school and at home. The center could place a higher priority on
professional development, supervision of instruction, and ongoing support of its
tutors to both ensure that all tutors are delivering high-quality instruction and to
inform its own practices and illuminate gaps in the program’s effectiveness.
Gaps in Knowledge of Literacy Development and Pedagogy
When recruiting tutors for the LRN program, The Down Syndrome Learning Center
sought individuals who had either direct teaching experience in reading or language arts or a
desire to teach as evidenced by their enrollment in university programs leading to a teaching
credential. Given this emphasis, one might conclude that the center seeks those who have both
the knowledge and the disposition to teach school-age children. However, this study revealed
that the center placed a much higher priority on recruiting tutors who had the disposition to work
with students with Down syndrome and learning needs that are complicated by their diagnosis,
rather than on selecting staff who had deep knowledge of literacy curricula and instructional
practices that were designed to reach this diverse population.
Research has shown that the teaching of reading is a complex endeavor, even when
students do not have difficulties (Snow, Burns, & Griffin, 1998; Worthy, Prater, & Pennington,
2003). Teaching reading effectively requires grounding in theory and methods of reading
instruction for diverse populations (Snow, Burns, & Griffin, 1998). Effective literacy teachers
do not use one single method; rather, they are “methodologically eclectic” (Shanahan &
Neuman, 1997), possessing the content knowledge and pedagogical background to integrate
various approaches to reading instruction, to know when and how to use what methods, how to
use assessments to drive instruction, and how to differentiate instruction depending on the nature
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of the student and the setting (Duffy & Hoffman, 1999). Research has also shown that teaching
students with persistent reading and writing difficulties requires additional expertise that even
experienced teachers of reading often do not possess (Snow, Burns, & Griffin, 1998; Worthy,
Prater, & Pennington, 2003). In addition, supplemental reading instruction is often most
effective when benchmarked by a battery of formative and summative assessments that can be
utilized to gauge both student achievement and teacher effectiveness (Browder & Cooper-Duffy,
2003).
The most frequently observed feature of the instruction delivered in the LRN program
was the emphasis on the affective and social-emotional aspects of tutor-student (tutee)
relationships rather than on the instructional delivery. Although many studies on literacy
tutoring have suggested the importance of the tutor-tutee relationship, few have documented
whether affective aspects of instruction, such as an empathetic or caring relationship between
tutor and student, outweigh the knowledge of content and pedagogy necessary to provide
instruction to students with significant reading delays (Shanahan, 1998). Yet despite the paucity
of research into the “social and cognitive processes inherent in tutoring” (Shanahan, 1998, p.
231), the center was overwhelmingly focused on the behavioral aspects of DS that could impede
learning and how the relationship between tutor and student was vital to ensuring a successful
tutoring session.
The training tutors received focused on providing students with simulated learning tasks
that were often decontextualized from the reading experience. Research has found that effective
literacy instruction to middle and high school students follows six guidelines (Langer, 2001;
Langer, Close, Angelis, & Preller, 2000). These traits are as follows: each lesson includes direct
instruction or guided practice that teaches skills and concepts through separated, simulated, and
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integrated tasks; assessments are embedded in instruction; lessons are connected to one another;
each lesson includes strategies for building independence and automaticity; teachers should train
students to be generative thinkers; and lessons should incorporate group processes. Most of
these guidelines were not in evidence during the tutoring sessions observed for this study. The
most common lesson type employed by tutors was a series of simulated learning tasks. These
tasks usually followed a read aloud of a short book or chapter of a longer work, followed by
literal comprehension questions, and a short writing exercise designed to determine if students
“got the gist” of the text. Directed, separated lessons were not observed during the tutoring
meetings, and opportunities for integrated experiences where students could use newly acquired
language or vocabulary in extended speaking or writing practice was also not observed.
Since the center did not provide or use assessments as part of its program, tutors did not
incorporate assessments into instruction. Although many tutors asked if their students
remembered what they did in a previous tutoring meeting, the concepts and skills from session to
session were not sequential and did not build in depth or complexity. For students with limited
reading skills, the sight word vocabulary “bank” was simply expanded to add new words from
additional predictable books, and any graphophonemic, semantic, or syntactic connections were
ignored or were not made explicit to the student during instruction (Goodman, 1995). Although
automaticity was stressed during these lessons, it was achieved entirely through teacher-directed
simulated activities; as a result, students did not have an opportunity to develop independence
with reading tasks. And since all lessons were teacher-led, students were rarely provided with
opportunities for generative thinking and no group instruction was observed.
The training tutors receive to prepare for tutoring students was not reflective of the large
body of research on effective literacy instruction in intervention settings. Most studies focus on
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the importance of time on task, quantity and quality of tutors’ explanations of reading rules, use
of appropriate modeling or demonstration, emphasis on specific student learning needs, and
responsiveness to errors during instruction (Shanahan, 1998). However, most of these attributes
of reading instruction were either downplayed or refuted by the center’s staff who provided the
training or who led the debriefing sessions after each tutoring meeting. During the initial
training, the tutors were taught that time on task was less critical than a child who leaves the
session happy, as evidenced by the statement that 10 minutes of literacy time was considered a
successful session. The training specifically instructed tutors to avoid explaining rules that might
help a student correct a reading or writing error or prevent him/her from repeating the error, a
facet of the center’s “errorless learning” philosophy (Buckley & Bird, 1993). In addition, the
training and many of the debriefing sessions espoused a singular instructional design that relied
on visual memory strategies within a sight word approach. This exclusive focus on logographic
skills and visual processing did not account for students’ individual strengths and weaknesses
and thus, was not leveraged during tutoring meetings as a method for improving reading skills
(Courtade, Spooner, & Browder, 2007). As a result, students who could have benefitted from
lessons on phonics and semantic or syntactic cueing systems continued to make similar reading
miscues throughout their sessions, and students who made few reading miscues did not receive
comprehension instruction that could have further expanded their literacy skills (Duffy &
Hoffman, 1999).
One notable area absent from tutoring meetings and from tutors’ interviews about their
reading instruction was the valuable role of modeling effective literacy practices. Although most
tutors engaged in a significant amount of modeling through the use of read aloud, at no time
were tutors observed directing their students to attend to the features of their oral reading, such
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as prosody or rate. Research has documented that oral reading for students with speech and
language impediments stemming from medical disorders such as Down syndrome and other
physical or intellectual disabilities may significantly impede oral reading fluency and reading
skills development (Abbeduto, Warren, & Conners, 2007). One of the characteristics of oral
reading difficulty stems from lack of prosody, or the fluent and accurate rhythm, stress, and
intonation of speech (Allington, 1983). However, since reliable, valid, efficient methods for
assessing oral reading fluency are in use in a variety of classroom and intervention settings,
teachers can but frequently do not incorporate systematic instruction and assessment in oral
reading fluency in supplemental reading programs as a way to leverage improvement in other
reading areas and literacy domains, particularly for students with disabilities that impact reading
achievement (Fuchs, Fuchs, Hosp, & Jenkins, 2001).
Recommendations
Drawing upon the research base, the LRN program could capitalize on the commitment
of the tutors by deepening their knowledge and abilities in using a wide array of literacy
practices that will improve outcomes for their students.
The program could to be structured in a manner in which tutors are expected to draw
upon a variety of curricular materials, pedagogical methods, and instructional strategies to help
students address their reading difficulties. The program could allow tutors to use research-based
methodology that utilizes the five causal factors identified by the National Reading Panel that
contribute most to reading achievement when embedded in reading curricula and instruction:
phonological awareness, phonics, fluency, vocabulary, and reading comprehension (National
Institute of Child Health and Human Development, 2000), as well as features that have proven
effective with students with learning and/or cognitive disabilities. In so doing, the center and
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each tutor would be able to ascertain the connection between the instructional practices used
during tutoring meetings and students’ reading achievement. The center could also provide
tutors with an array of curricular programs that help students develop literacy skills in separated,
simulated, and integrated ways to bridge academic learning to real-world applications, as
opposed to the reliance on simulated learning tasks. These programs could feature explicit
instructional strategies that are designed to increase students’ accuracy, comprehension, and
independence while reading, writing, listening, or speaking during literacy instruction (Askew,
Fountas, Lyons, Pinnell, & Schmitt, 1998; Elbaum, Vaughn, Hughes, & Moody, 2000).
The implementation and use of both formative and summative assessments during each
10-week session could further assist tutors and staff in determining students’ literacy growth.
The center’s staff could select and implement a variety of literacy assessments that would gauge
the effectiveness of the strategies used in the program. To enhance the assessment element, the
center could also engage the parents and students in goal setting exercises that are used to guide
each tutoring meeting and are used to determine any needed further instruction. Furthermore, the
program could be bolstered by regular and frequent evaluation of the program through analysis
of both formative and summative student data, including tutors’ lesson plans, objective reading
inventories and assessments, and subjective measures such as students’ written work samples
and recording of students’ oral reading (Worthy, Prater, & Pennington, 2003). In so doing, the
center will be able to determine whether a student’s tutoring regimen would need to increase or
decrease in frequency (number of sessions per week/month), intensity (instructional level and
focus), and duration (total length of time needed for improvement). Through the implementation
of assessments, the center’s staff will be able to determine which students may benefit from
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multiple tutoring sessions per week, the instructional focus, and the length of time for each
session that is optimal for each student.
The curriculum and instructional methods employed by the center for teaching reading to
students with Down syndrome could be redesigned to match those used in mainstream settings,
though applied on a different timeframe and using differentiated classroom and tutoring designs
given the students’ significant developmental delays (Farrell & Elkins, 1994). Since many of the
tutors employed for the LRN program are either former teachers or teachers-in-training, the
center could infuse their training sessions and debriefing meetings with opportunities for the
tutors to reflect upon what they know about teaching reading to nondisabled students and
connect that prior knowledge and experience to new learning about teaching literacy skills to
students with significant learning, cognitive, and/or intellectual disabilities. Using this design,
the center could embed the unique behavioral characteristics of students with DS and their
recommended approaches for curbing inappropriate behaviors within the larger context of
effective literacy practices for this population.
In an effort to retain the center’s “errorless learning” philosophy but infuse tutoring
meetings with pedagogies that promote self-regulation of literacy learning, the center could
continue to promote the use of modeled read alouds during instruction. Given that oral reading
ability has been linked to students’ self-efficacy and motivation to persist through texts that are
above their reading ability (Gambrell, 1996), the LRN program could make use of this research
by encouraging tutors to utilize read aloud as an explicit oral reading strategy. Without an overt
reasoning for the read aloud, the modeling power of this strategy would not be leveraged for
teaching students the aspects of oral reading that might improve comprehension, such as
improving pacing, rate, intonation, inflection, and fluency. In addition, this modeling and
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instruction would complement the speech and language therapies most students with DS receive
either at school or at specialized clinics through their Individualized Education Programs (IEPs).
Although each of the older students enrolled in the LRN program struggles with literacy,
each possesses unique qualities that could be utilized during peer tutoring sessions, small group
instruction, or enrichment activities that promote literacy. Since a goal of the Down Syndrome
Learning Center is to help students with DS develop the skills necessary for school and social
environments, the center could incorporate opportunities for cross-age peer tutoring or small-
group instruction to replicate the practices students experience in school. Peer tutoring has often
been shown to have a demonstrable effect on both achievement and self-efficacy indicators such
as motivation, engagement, and persistence (Agran, 1997; Smith & Nelson, 1997; Wehmeyer,
Agran, & Hughes, 1998). Students with intellectual disabilities benefit from explicit, appropriate
educational supports, such as self-monitoring strategies, that allow them to be more successful
on academic tasks (Gilberts, Agran, Hughes, & Wehmeyer, 2001). Students with intellectual and
cognitive disabilities could make significant gains in adaptive skills through the use of peer
tutoring (McDonnell, Thorson, Disher, Mathot-Buckner, Mendel, & Ray, 2003; Spencer &
Balboni, 2003). In addition, developing a program laden with frequent opportunities for
purposeful social and intellectual language exchanges with skilled language users such as tutors
could allow students with DS to bridge receptive language skills to more natural, expressive uses
(Farrell & Elkins, 1994; Krashen & Terrell, 1983).
Supervision of Instruction
As stated earlier, teaching reading effectively requires grounding in theory and methods
of reading instruction for diverse populations. But research shows that possessing the requisite
knowledge of both content and pedagogy is not sufficient to ensure a successful program
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(Worthy, Prater, & Pennington, 2003). There was little evidence of ongoing supervision of
instruction or mentoring that was focused on effective literacy pedagogy in the LRN program.
The center’s staff focused more on whether students left each tutoring meeting happy and on
whether parents felt that their students would persist through more reading and writing activities
at school and at home. Yet research has demonstrated that supplemental instruction in literacy
tutoring programs must also include supervised observation of successful practices from experts,
mentoring from literacy specialists, carefully planned and executed practicum experiences, and
ongoing practice (Snow, Burns, & Griffin, 1998). When selecting tutors who have some prior
experience or who have received prior training in literacy, as is the case with the Let’s Read Now
program, the tutoring program staff could provide additional training and guidance to make their
expectations clear to tutors and to ensure student success (Allor & McCathren, 2004). Although
tutoring programs that utilize certified teachers for more advanced reading strategies often yield
more positive results than those using paraprofessional tutors (Askew, Fountas, Lyons, Pinnell,
& Schmitt, 1998), programs that utilize more traditional reading strategies could prepare tutors
with small amounts of training and assistance and still accelerate reading development for at-risk
elementary students (Allor & McCathren, 2004). And given that the majority of the tutors
recruited for this program did not have direct experience teaching literacy to students with
intellectual disabilities, their self-efficacy and their teaching efficacy as measured by others
could be shaped by professional development that begins with traditional training opportunities
and also incorporates modeling and coaching from skilled experts and frequent opportunities for
practice (Tschannen-Moran & McMaster, 2009).
The executive staff of the Down Syndrome Learning Center expressed differing
perspectives on professional development and supervision of instruction during interviews
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throughout the study. In early interviews prior to observation of the tutoring meetings, the
executive staff indicated that they observed tutors during training, sessions, and debriefing
meetings to determine where additional support was needed. Yet the professional development
was limited to the initial training, a vicarious experience where the tutors listened to a lecture on
instructional and behavioral strategies they were expected to use during their tutoring; no further
training was provided by the center or its executive staff. Although observation of the tutors
during the initial training was used to determine teacher-student pairings for the sessions, at no
time during this study were the tutors supervised directly by executive staff. During the
debriefing meetings, most tutors and executive staff shared their knowledge and experience in
working with children with DS, rather than using the time to explore problems of practice.
When tutors raised concerns about their practice during these meetings, executive staff did not
capitalize on the opportunity to engage in deeper discussion about the problem, offer extra
training, coaching, or expertise, or model a practice that could be used during a tutoring meeting.
As a result, follow-up interviews with the tutors revealed that they were not concerned about
whether their instruction resulted in improved literacy outcomes for their students. Their
responses revealed that they believed they lacked efficacy, as their comments reflected that they
were preoccupied with students’ behavioral needs, even when for most students their behavior
would not have significantly impeded learning if those behaviors were incorporated into a more
cohesive, individualized lesson plan for each tutoring meeting.
Tutors did not seem to feel that evaluation and ongoing feedback were necessary to being
successful literacy tutors, but they stated it would have been welcome to learn and grow as
teachers. Melody, who had been working as a tutor for the center for approximately one year
before the interview, stated that she felt she had received enough initial training and ongoing
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feedback from both staff and other tutors. All of the other tutors interviewed for this study
expressed similar satisfaction with the training and debriefing meetings. However, when asked
about how she believed she was evaluated, Melody gave a different response:
They don’t really do that. We don’t really receive a lot of feedback. I haven’t really
gotten any feedback. I wish that there was some kind of feedback because it’s not easy to
see what you’re doing while you’re in the situation. I wish there was a third party there
to notice what I’m doing or not doing, and make suggestions.
The other tutors who were not yet certified teachers – Melissa, Michelle, and Hannah –
expressed similar feelings about how wanted to be evaluated. Karen, the only tutor observed for
this study who had experience with classroom teaching, stated that she did not feel evaluation
was necessary for her due to her experience, but mentioned that it might have been effective for
the newer tutors.
Recommendations
Drawing upon the research base, the center could place a higher priority on professional
development, supervision of instruction, and ongoing support of its tutors to ensure that all tutors
are delivering high-quality instruction, to inform its own practices, and to illuminate gaps in the
program’s effectiveness.
In connection with the first recommendation, the center’s executive staff could take an
inventory of each tutor’s knowledge of literacy instruction and practices that benefit students
with disabilities upon offering employment. Tutors working with this population could benefit
from exposure to both theory and methods of reading instruction in order to become effective
literacy tutors (Worthy, Prater, & Pennington, 2003). Armed with this knowledge, the executive
staff could design a professional development plan in consultation with each tutor to ensure that
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she has the content and pedagogical knowledge necessary for the position. To move this type of
learning beyond vicarious experience, the training could involve modeling of the targeted skill
and concurrent opportunities for tutors to practice each strategy during the training session.
Although these types of learning experiences are simulated because they will involve other tutors
playing the role of student, they could serve as a sources of self-efficacy upon which tutors could
draw when they are working directly with students (Tschannen-Moran & McMaster, 2009).
Research has demonstrated that supplemental instruction in literacy tutoring programs
must also include supervised observation of successful practices from experts, mentoring from
literacy specialists, carefully planned and executed practicum experiences, and ongoing practice
(Snow, Burns, & Griffin, 1998). If the executive staff of the Down Syndrome Learning Center
determines they do not possess the knowledge or capacity to become effective coaches and
instructional supervisors, or if they determine they do not have time to engage in this work due to
the operational demands of the center, then they could recruit and hire staff who specialize in this
work and report back to the executive staff. In so doing, the center would be able to facilitate the
regular, ongoing additional training, modeling, practice, and coaching necessary for making their
expectations clear to tutors and ensuring student success (Allor & McCathren, 2004).
And finally, the center’s staff could consider utilizing a case study approach when
analyzing problems of practice during the debriefing meetings (Patton, 2002). As the research
design for this study, the case study method is a qualitative process of gathering and analyzing
“comprehensive, systematic, and in-depth information” (Patton, 2002, p. 447) about a single case
that is typical of literacy learning problems among students at the center. At each debriefing
meeting, the executive staff could ask one tutor to share a case, focusing on an attribute of
literacy instruction that she found particularly challenging during a tutoring meeting. When the
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staff is engaged in the regular supervision of instruction, they could select cases that are ripe for
group inquiry and study and are not overly focused on the behavior attributes of students with
DS. The group could identify and describe findings that are relevant to solving the problem.
Using this methodology, the group as well as individual tutors would be able to learn from each
other, focus on important problems of practice without getting sidetracked with lesser issues, and
be supported in their own growth and development.
Implications for Future Research
This study revealed many areas for future research for both the Down Syndrome
Learning Center and the greater research community. The executive staff expressed an interest
to the researcher in engaging in additional research that might benefit their students and families,
so the center may wish to seek out partnerships with universities and research institutions who
have an agenda that includes promising practices in literacy instruction for students with
significant learning needs resulting from a diagnosis of Down syndrome.
Many areas for future research would have immediate benefit both at the center and in
traditional, K-12 day programs and supplemental tutoring programs. Starting with assessment,
since few reading, writing, listening, and speaking assessments have been validated for use with
students with significant cognitive or intellectual disabilities, the academic community could
focus attention there so that instructional decisions can be driven by data. In examining effective
instructional practices, the research community could broaden its study of these practices to
those used in authentic settings, as opposed to the clinical or laboratory settings where much of
the research that guided this study was conducted. Connected to that recommendation, the
research community could ensure that studies include teachers and tutors with a wider range of
experience. Much of the literature that guided this study put the researchers themselves in the
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role of teacher, thus skewing the results and not portraying an accurate view of how the
instruction would most likely be delivered in authentic settings.
And as for the relatively large body of research on literacy development for students with
Down syndrome, the research community could make greater effort to conduct research that
reflects the wide range of learning and cognitive strengths and delays among this population, as
most of the literature cited in this study focused on students with moderate-to-severe forms of the
DS disorder who are almost exclusively taught in nontraditional settings. With NCLB placing
greater emphasis on educating students in the least restrictive environment, future research could
to determine to what extent students with learning needs resulting from a diagnosis of DS can be
taught and can learn to read during elementary school and/or adolescence, particularly when
students have mild-to-moderate cognitive delays. And finally, given that most of the research
cited for this study was conducted outside the United States, scholars at American institutions of
higher learning could devote more of their research agenda to examining literacy curricula,
instructional practices, and assessments that are effective for students with cognitive and
intellectual impairments resulting from a wide range of genetic and congenital disorders or
traumatic brain injuries.
Limitations
The limitations of this study were the characteristics of its design or methodology that set
parameters on the application or interpretation of the results of the study. The limitations also
acknowledged the constraints on generalizability and utility of findings, including possible
threats to internal and external validity. This study was a qualitative case study evaluation of a
single literacy tutoring program; as such, its generalizability to other literacy programs for
students with DS or other learning, cognitive, and/or intellectual disabilities is not known and
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was not addressed in this study. Given the limited scope of this study, its utility for other
researchers or for other programs can only be interpreted by those individuals. This study was
also limited by the short time frame in which data was gathered and the limits of data gathering
by a single researcher.
Most importantly, the literature on literacy programs for pre-adolescent and adolescent
students with moderate-to-severe learning, cognitive, or intellectual disabilities was extremely
limited. Most of the research examined for this study was not conducted in the United States and
was conducted in clinical or laboratory settings that did not approximate classrooms or tutoring
programs more commonly found in the United States. In addition, although recent research has
focused more on the role of phonological awareness and processing in reading acquisition for
students with DS, limited research exists on remediating deficits in other literacy domains of
listening, speaking, fluency, comprehension, and writing among students with DS, either as
individual literacy traits or within a comprehensive or balanced literacy program.
Conclusion
The problem examined in this study was the limited research on literacy development and
effective practices for supplemental literacy instruction for students with Down syndrome and
other moderate-to-severe learning, cognitive, and/or intellectual disabilities that could be utilized
in either classroom or intervention settings. The purpose of this study was to describe the
curricular and instructional elements of an afterschool literacy tutoring program for students with
Down syndrome and to qualitatively identify and describe the gaps between its current practices
and the recommended, research-based approaches to teaching reading and literacy skills to this
population and students with similar learning profiles. The methodology used in this study
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illuminated the ways in which the tutors support literacy skill development for their pre-
adolescent and adolescent students.
This study aimed to extend the research on literacy instruction, supplemental literacy
instruction, and intervention/tutoring programs for students with moderate-to-severe learning,
cognitive, and/or intellectual disabilities by investigating the elements of a literacy tutoring
program for students in early adolescence. Examining these research questions provided insight
into what pertinent changes need to take place in this tutoring program and informed the types of
changes that need to occur in both current K-12 day programs and intervention settings for
students with disabilities in order to improve outcomes for this population.
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APPENDIX A
INFORMED CONSENT LETTER

STUDY OF LITERACY TUTORING PROGRAMS
FOR STUDENTS WITH DOWN SYNDROME
CONSENT FOR VOLUNTARY PARTICIPATION
I volunteer to participate in this qualitative study and understand that:
1. I will be interviewed by Lisa Regan. She will use a guided interview format consisting of
open-ended questions.

2. The questions I will be answering address my views on issues related tutoring students
with Down syndrome in reading and literacy. I understand that the primary purpose of
this research is to identify literacy strategies used in tutoring programs for students with
Down syndrome.

3. The interview may be tape recorded to facilitate analysis of the data.

4. My name will not be used, nor will I be identified personally in any way or at any time. I
understand it may be necessary to identify participants in the dissertation by their college
affiliation.

5. I may withdraw from part or all of this study at any time.

6. I have the right to review material prior to the final oral exam or other publication.

7. I understand that results from this survey will be included Lisa Regan’s doctoral
dissertation and may also be included in manuscripts submitted to professional journals
for publication.

8. I am free to participate or not to participate without prejudice.

9. Because of the small number of participants, I understand that there is some risk that I
may be identified as a participant of this study.

____________________________________ _____________________
Researcher’s Signature Date

____________________________________ _____________________
Participant’s Signature Date

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APPENDIX B
INTERVIEW PROTOCOL FOR EXECUTIVE STAFF
2

The researcher will interview the executive staff members of the parent organization that
provides a literacy tutoring program for students with Down syndrome. Findings yielded from
the interview will be utilized to answer research questions in a dissertation, which is part of a
doctoral program.

The interview is expected to take approximately 60-90 minutes. The interview will focus on the
genesis of the program, the nature of the literacy tutoring program and its philosophy, and the
goals of the program. Topics to be included:

• The genesis and motivation for the program, including its objectives
• Selection and preparation of tutors
• Training provided to tutors
• Beliefs regarding of effective literacy instruction for students with Down syndrome
• Curriculum and materials used to deliver literacy instruction
• Methods for assessing the literacy needs of students and monitoring their progress
• Meeting the needs of their students/clients
• Working with parents

2
The interview protocols in Appendices B and C are adapted from Worthy, Prater, & Pennington, 2003.
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Executive Staff Interview Questions
I would like to talk to you about your tutoring program and its different features. First I will ask
you about how the program got started and its organizational structure and about how you select
tutors. Then I will ask about tutor training, instruction during tutoring meetings, and then I will
end with some questions about your assessment of the program.

Background and Organization
1. Tell me about your literacy tutoring program (prompts: when it started, how it’s
organized, etc.).

2. What prompted the creation of this program? For example, was it based on something
you observed or participated in, or was it your own conception and design?

3. What are the objectives of your tutoring program?

4. What kind of financial support do you get for the tutoring program? What do you use it
for (training, supervision, materials, etc.)?

5. Do you have other sources of support?

6. If your organization had more money, how would you use it?

Tutor Selection
7. How do you recruit tutors?

8. What is your selection process (resume, letter of recommendation, transcripts, interview,
demonstration lesson, videos, etc.)?

9. Who is involved in the tutor selection process? Why did you select those individuals
(their experience, knowledge of your program, etc.)?

Tutor Training
10. How does training and supervision of tutors work with your program?

11. Who does the training? What qualifications with respect to literacy does this person/these
people have? Do you have a staff person dedicated to training tutors during the year?

12. Talk about initial training. (How many days of training do tutors get before they begin
working with students? How is the training developed? What is the focus of this
training?)
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13. What ongoing training do tutors receive during the school year?

Instruction
14. What do you believe is necessary for effective literacy instruction for students with Down
syndrome?

15. Do your tutors use a specific lesson framework while working with students? Where do
tutors get the materials they use?

16. What grade levels do your tutors work with?

17. Do the tutors ever work with their tutees’ classroom teachers?

18. What assessments are done with the students? Who does these?

19. What happens during the tutor-parent conferences?

20. How do you monitor tutors?

Evaluation
21. What do you think your program does well?

22. What are some things you would like to do better?

23. How do you evaluate your program?

24. What would you change if you could (such as, if money was no option)?

25. What else would you like to tell me about your program that I haven’t asked yet?

This concludes my interview. Thank you for your participation.

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APPENDIX C
TUTOR INTERVIEW PROTOCOL
3

The researcher will interview tutors in a literacy tutoring program for students with Down
syndrome to investigate their experience, preparation, and practices for providing literacy
instruction. Findings yielded from the interview will be utilized to answer research questions in a
dissertation, which is part of a doctoral program.

The interview is expected to take approximately one hour, and can be conducted in person or on
the telephone. The interview will focus on experience with teaching, tutoring, and students with
disabilities, literacy instruction, and the following topics:

1. Beliefs regarding of effective literacy instruction for students with Down syndrome
2. Curriculum and materials used to deliver literacy instruction
3. Methods for assessing the literacy needs of students and monitor their progress
4. Meeting the needs of their students
5. Working with parents

3
Adapted from Worthy, Prater, & Pennington, 2003.
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Tutor Interview Questions
I am doing a study of your tutoring program, and I am interested in the perspective of the tutors.
1. What was your prior experience with teaching or tutoring before you were hired to be a
literacy tutor? (prompts: What was your college major? Did you do any volunteer or paid
tutoring before or during college, and if so, with which population and in what subject?
Are you in school now, and if so, what are you studying?)

2. What was your prior experience working with students with Down syndrome or other
learning or intellectual disabilities?

3. What do you believe is necessary for effective literacy instruction for students with Down
syndrome?

4. Talk about your experiences as a tutor for this program (prompts: When did you start?
What do you do? What’s your schedule like? How many kids do you tutor? Is there a
routine or lesson plan? What kinds of materials do you use? How do you know where to
start with your tutees, and where to go with them during each meeting?)

5. Tell me about the training and supervision you’ve received. Do you work with a mentor
or supervisor? How does that work?

6. How is the program going for you?

7. What do you feel good about as far as your tutoring? What do you feel kind of shaky
about?

8. How does meeting with parents help you teach their children?

9. Is there any aspect of the program you would change?

10. Is there anything that would help you do your work better?

11. How do you think your work is evaluated?

12. What else would you like to tell me about this program or your experience being a tutor
that I haven’t asked yet?

This concludes my interview. Thank you for your participation.

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APPENDIX D
OBSERVATION PROTOCOL
This observation protocol captures literacy instruction within the context of a tutoring setting for
students with Down syndrome. Completion of the observation protocol form requires the
researcher to compile qualitative data for each tutoring meeting by creating a chronological
script of dialogue and events. Following data collection, the observation data will be analyzed,
coded, and categorized for common patterns and themes.

Program Background
Prior to the observation, the researcher completes interviews with the program’s executive staff
members and a review or program documents, including brochures and the organization’s
website.

Site
At the beginning of each observation, the researcher will draw a sketch of physical
characteristics of the room, noting the location and orientation of each tutor and tutee, and any
other personnel in the room.

Chronological Script of Events
During the observation, the researcher focuses on activity/format, tutor prompts, student
responses, and literacy components and materials used in chronological order. Time will be
noted in the left column whenever feasible to document the chronology and time-on-task of each
phase of a tutoring meeting. In addition, the researcher will note any critical information or
nonverbal behaviors on the part of tutor, tutee, or other persons in the room in the right column.

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Physical Environment of Tutoring Session

Time & Date: __________________ Location: _____________________
Number of Tutors: ________ Number of Students: _______ Number of Others: _____
Sketch the room environment, including the placement of tables (box), chairs (X), names of
tutors, students, and others (CAPS initials for tutors, lowercase for students), and the
orientation of tutors and tutees (as indicated by arrows).

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Observation Script

Date: __________________ Location: _____________________
Time Script of Dialogue (T for Tutor, S for Student)
Indicate initials of Tutor and Student on first occurrence
Other Details

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APPENDIX E
SAMPLE READING AND WRITING ACTIVITY

______________________________________________________________________________
______________________________________________________________________________
______________________________________________________________________________
Used by permission from one of the tutors.

Abstract (if available)

Abstract The study utilizes an inductive, qualitative approach to program evaluation to understand the nature of an afterschool literacy tutoring program for students with Down syndrome. Two research questions guide this study: (a) What are the curricular and instructional elements of the Let’s Read Now (LRN) literacy tutoring program for students with significant learning needs resulting from a diagnosis of Down syndrome? and (b) How does the LRN program align its practices to the research-based approaches to core and supplemental literacy instruction? The methodology utilized in this study is a formative, program evaluation design based on a nested case study approach. Findings reveal that training and ongoing support for tutors centers on the behavioral characteristics of students with Down syndrome as opposed to instructional practices that promote literacy development. For students with limited reading skills, the program utilizes a sight word approach for teaching reading, which is based on research that has largely been refuted by more recent studies indicating that students with DS can learn to read with direct instruction in both phonics and comprehension blended with explicit attention to auditory and/or visual memory. The findings provide insight into what pertinent changes could take place within this tutoring program to situate affective and behavioral aspects of learning within a larger, research-based framework that promotes students’ literacy growth. In addition, this study provides avenues for future research in the areas of literacy curriculum, instructional practices, and assessments for students with significant learning needs arising from developmental disorders, and it informs the types of practices that could prove effective within school programs as well as tutoring or intervention settings for students with learning, cognitive, or intellectual disabilities in order to improve outcomes for this population.

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Asset Metadata

Creator Regan, Lisa Michelle (author)

Core Title Supplemental literacy instruction for students with Down syndrome: a program evaluation

School Rossier School of Education

Degree Doctor of Education

Degree Program Education (Leadership)

Publication Date 04/05/2013

Defense Date 02/11/2013

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag Down syndrome,instruction,Literacy,OAI-PMH Harvest,tutoring

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Mora-Flores, Eugenia (committee chair), Hirabayashi, Kimberly (committee member), Pensavalle, Margo (committee member)

Creator Email lisa.regan@lausd.net,lisa.regan@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c3-231311

Unique identifier UC11295053

Identifier usctheses-c3-231311 (legacy record id)

Legacy Identifier etd-ReganLisaM-1513.pdf

Dmrecord 231311

Document Type Dissertation

Rights Regan, Lisa Michelle

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the a...

Repository Name University of Southern California Digital Library

Repository Location USC Digital Library, University of Southern California, University Park Campus MC 2810, 3434 South Grand Avenue, 2nd Floor, Los Angeles, California 90089-2810, USA