What constitutes a free and appropriate education for autistic children in Hawaii: what do parents think?

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Content Running Head: EDUCATION FOR AUTISTIC CHILDREN 1 WHAT CONSTITUTES A FREE AND APPROPRIATE EDUCATION FOR AUTISTIC CHILDREN IN HAWAII: WHAT DO PARENTS THINK? by Janet Edghill A Dissertation Presented to the FACTULY OF THE USC ROSSIER SCHOOL OF EDUCATION UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degree DOCTOR OF EDUCATION December 2014 Copyright 2014 Janet Edghill EDUCATION FOR AUTISTIC CHILDREN 2 Dedication To Ryan, a fascinating little fellow and my reason for this journey. I love you to the moon and back. Mommy EDUCATION FOR AUTISTIC CHILDREN 3 Acknowledgements There are so many people I want to thank, but my husband, Tom comes first to mind. Thank you for enduring many weekends as a single dad and allowing me to pursue this dream. To my kids, Katharine, Eric, Meghan, and of course, Ryan, I hope my passion for education will serve as a model for you. To my parents, Chuck and Tess, thank you for instilling in me the importance of education. To my dissertation committee—my chair, Dr. John Pascarella, Dr. Melora Sundt, and Dr. Larry Picus—a big thank you. I enjoyed having you in class and then on my committee; you epitomize the best higher education has to offer. You challenged me, held me to a high standard, and helped me shape my ideas into this dissertation. Mahalo Nui Loa! EDUCATION FOR AUTISTIC CHILDREN 4 TABLE OF CONTENTS Dedication 2 Acknowledgements 3 ABSTRACT 7 CHAPTER ONE: INTRODUCTION 8 Statement of the Problem 9 What is Autism? 11 Why the Financial Aspects of Autism Matter in Providing a FAPE 16 The Legal Requirement to Provide a FAPE 18 Use of Evidence-Based Treatments in Autism 22 Special Education in Hawaii 23 Purpose of the Study 29 Research Question 30 Significance of the Study 30 Conceptual Framework 31 Figure 1. Conceptual Framework 32 Assumptions 33 Limitations 33 Definition of Terms 34 CHAPTER TWO: LITERATURE REVIEW 37 The Legal Framework for the Provision of a FAPE for Autistic Students 37 Evidence-Based Practices for Education of Autistic Students 46 Evidence-Based Practices in Treating Autism and Outcomes 47 EDUCATION FOR AUTISTIC CHILDREN 5 Parental Satisfaction with Autism Services in Public Schools 53 Social Validity Theory 56 Summary 59 CHAPTER THREE: RESEARCH METHODOLOGY 60 Research Design 60 Site Selection and Participant Criteria 62 Data Collection 63 Data Analysis 64 Informed Consent 64 Validity and Reliability 66 Summary 67 CHAPTER FOUR: RESULTS 69 Overview of Study 69 Overview of Participants 70 Overview of Interviews 71 Social Validity Themes: Findings and Discussion 74 Significance of Goals 74 Appropriateness of Procedures 77 Quantity 77 Diversity of Services 78 Intensity of Services 79 Quality 80 IEP Process 81 EDUCATION FOR AUTISTIC CHILDREN 6 Communication 82 Safety 84 Importance of Effects 88 Additional Findings 89 Trusting Providers with Child ’s Safety and Well-Being 89 Ability to Trust Providers to Provide a FAPE 91 Conclusions 92 CHAPTER FIVE: CONCLUSIONS 94 Discussion, Implications, and Recommendations for Future Research 94 Summary of Findings 94 Social Validity Findings 95 Implications for Parent Participants 97 Implications for DOE Personnel 97 Recommendations for Future Research 99 Conclusion 102 References 104 Appendix A 119 Appendix B 120 EDUCATION FOR AUTISTIC CHILDREN 7 ABSTRACT This qualitative study describes the opinions of parents of autistic students ages 5 through 12 years who attend public schools in Mana District (a pseudonym), Oahu, Hawaii, and Applied Behavior Analysis (ABA) therapists who treat or have treated autistic students in Mana District regarding the provision of a Free and Appropriate Public Education (FAPE). The study sought to determine what factors are most important to parents in the provision of a FAPE, as well as the professional opinion of private therapists of where the schools are succeeding or failing. Seven parents and four therapists were interviewed for their opinions of the public education being provided to their children or clients. Responses were viewed through a Social Validity lens. Key factors that influence satisfaction with a child’s FAPE include the level of services, both quantity of services and intensity of which they are provided, the quality of providers, providing a safe and nurturing environment, open communications, including parents and therapists as part of the Individualized Education Program (IEP) team, and trusting the educators and professionals involved in the child’s education. Safety of students emerged as a key concern as did a feeling that not all educators were familiar with autism, affecting the quality of a FAPE. EDUCATION FOR AUTISTIC CHILDREN 8 CHAPTER ONE: INTRODUCTION Rates of autism increased by 30% from 2008 to 2010 (Centers for Disease Control, 2012) and are continuing to rise (Blumberg, et al, 2013). The most recent statistics published by the Centers for Disease Control (CDC) indicate 1 in 68 American children have an autism spectrum disorder (Wingate, M. et al, 2014), representing a 123%% increase since 2002 (Centers for Disease Control, 2014), and a 30% increase since 2012, with boys five times as likely to be affected as girls. The number of students with autism has escalated more rapidly than educators’ ability to meet the demands (Lang, et al, 2010). Coincident with this increase is the pressure to provide evidence-based programming (Long, 2011). School systems are in the middle of a complex equation that requires them to meet unclear federal mandates under the Individuals with Disabilities Education Act (IDEA) to provide a Free and Appropriate Public Education (FAPE) because there is no clear definition under the law of what constitutes a FAPE for autistic children. Because autism is a condition frequently and explicitly excluded from health insurance coverage that requires intensive and expensive treatment, many families realize their best opportunity at getting their children the help they need is through the school system. It is no surprise then, that parents of autistic children place a higher level of demands for services. However, federal mandates prescribed under IDEA are largely unfunded (Katsyiannis, Yell & Bradley, 2001) and local resources are stressed to increase capacity to meet the rapidly increasing autistic population, creating a tension between families seeking finite services and the school system, which must manage resources to a budget while providing a FAPE for its special needs students. Lawsuits involving failure to appropriately educate autistic children represent the fastest growing area of special education litigation (Zirkel, 2011) indicating dissatisfaction on the part of parents of autistic children with schools and school districts. Beyond the obvious EDUCATION FOR AUTISTIC CHILDREN 9 stressors of high-demand for quality services in conjunction with the need by school districts to manage resources, it is unclear what other factors might be in play. The aim of this study is to explore parents’ perspectives of what constitutes a FAPE for autistic children to better understand where schools are succeeding or failing in the eyes of parents. This study will evaluate parents’ social validation of the services and interventions offered to autistic children in K6 in Mana District, Oahu, Hawaii. Social validity refers to the social acceptance of the goals, procedures, and outcomes of programs and interventions (Wolf 1978) and can be regarded as consumer satisfaction by those who receive, implement, and oversee these interventions. In the case of this study, parents and students are identified as the consumers who receive interventions; teachers and therapists are identified as the implementers; and administrators are identified as the overseers. I will seek to learn what factors affect a parent’s perspective of social validity and its relationship to satisfaction with their child’s FAPE. This will be done through a Social Validity lens by assessing the Significance of Goals—are objectives meaningful to parents? Acceptability of Procedures—are the programs and services in place for the child acceptable to the parents? And Importance of Effects—are the outcomes of interventions satisfactory to parents? Statement of the Problem Autism is a complex neurological disorder. To understand why parents are often in conflict with schools in determining what services and what levels of intervention are appropriate, it is helpful to understand the characteristics of the disorder, the costs associated with it, the documented rise in its incidence and the efficacy of intensive behavioral interventions in the context of legal requirements to provide a FAPE to autistic students. EDUCATION FOR AUTISTIC CHILDREN 10 Autism is often described as being a spectrum disorder, referring to the heterogeneity of and severity of symptoms. Autism Spectrum Disorders (ASD) range from a diagnosis of Asperger’s Syndrome, which is generally considered to be a higher-functioning form of autism, to classical autism, which is typically more severe. However, children with Asperger’s Syndrome can still struggle with debilitating social disorders, anxiety, sensory processing disorders and communication abnormalities (Woodbury-Smith & Volkmar; 2009). An autism diagnosis places an enormous financial burden on families who must frequently pay for expensive treatments out-of-pocket due to the lack of insurance coverage. Yet parents often find programs offered through public education are inadequate or inappropriate for their child (Sharpe & Baker, 2007) so they seek private providers to augment what is provided through the school system. Without health insurance to defray costs, evidence-based treatment for children with autism is unaffordable to most American families. Applied Behavior Analysis (ABA) programs are the primary means to mitigate the symptoms of autism and facilitate learning, although an autistic child generally requires other therapies, as well. The median annual household income in the U.S. is $51,017 (DeNavas-Walt, Proctor & Smith, 2013), and the cost of a 30 – 40 hour a week ABA program could easily exceed $150,000 per year, when the cost of a trained therapist charging between $50 and $125 an hour is considered (Wood, 2009). Relying on families to cover the costs of autism treatment disproportionately favors upper-income families and disadvantages children from low-income families from receiving appropriate treatment (Thomas et al, 2007). Because of the inability of most families to afford ABA at the intensity levels it is required, in concurrence with the understanding that the earlier that intervention starts the higher the likelihood of more positive outcomes (Koegel, 2000)--and because ineffective and inefficient interventions can be damaging EDUCATION FOR AUTISTIC CHILDREN 11 to the development of a child with autism (Koegel, Robinson & Koegel, 2010)--parents pressure schools to put what they consider the best interventions in place for their children as soon as possible. Existing research showing autism litigation is disproportionately high when compared with other disabilities (Zirkel, 2011), coupled with national litigation patterns, suggests parents are not satisfied with the special education and related services their children are receiving (Bitterman, et al, 2008). The same patterns hold in Hawaii; based on the disproportionate number of Due Process cases on behalf of autistic students under IDEA (Benitez, et al, 2011), a significant number of parents of autistic children do not feel their children are receiving a FAPE. This disproportion possibly indicates a disparity in how a FAPE is defined between educators and parents of autistic children, or it could be indicative of low social validity on the part of parents. There is little in the literature to explain the dissatisfaction on the part of parents. The following sections will describe the complexity of the autistic condition that must be addressed by schools, the financial aspects of providing a FAPE, and the legal requirements to provide a FAPE and how gaps in law open the door to increasing levels of autism litigation by parents who are not satisfied with their child’s education. What is Autism? Autism is a unique disorder and is now acknowledged as being clinically, etiologically and biologically heterogeneous (Bauman, 2010); although afflicted individuals may share a diagnosis, children exhibit different symptoms, strengths and weaknesses, regardless of severity. To better understand the condition, the following section will describe the symptoms associated with autism and impairments that are generally treated by the educational system. EDUCATION FOR AUTISTIC CHILDREN 12 Autism was first described by Dr. Leo Kanner in 1943 as a neurological condition affecting social interactions, and communication, with impaired ability to make eye contact and resistance to change (Kanner, 1943). Repetitive and self-injurious behaviors and sensory processing disorders are common among autistic persons, as are speech and language delays or impairment, as well as stereotypic behaviors, sensory processing dysfunction and an insistence on sameness (Bauman, 2010). It is often referred to as a spectrum disorder because of the range of the symptoms and severity. Autism is diagnosed through observation, psychological testing, and by meeting a number of specific criteria on the Diagnostic and Statistical Manual of Mental Disorders – currently the fourth edition is in use and is referred to as the DSM – IV-TR. Although first observed and labeled in the mid-1940s, it was a very rare condition and it was not until the third edition of the DSM (DSM-III), which was published by the American Psychiatric Association in 1980 that autism was mentioned. It was referred to as “Infantile Autism” and incorrectly included “Absence of delusions, hallucinations, loosening of associations, and incoherence as in Schizophrenia” as part of the diagnostic criteria. Since the publication of the DSM-III, the level of research and awareness of requirements for clinical diagnosis has greatly increased. The version of the manual, the DSM-IV-TR was published in 2000, and specifies a total of six or more characteristics from three different sections an individual must have to qualify for an autism diagnosis under the umbrella of Pervasive Development Disorders. To be considered autism, the age of onset of symptoms should be observed by the age of three in several different categories: Social Interaction; Language for Communication; and Restricted, Repetitive and Stereotyped Behavior Patterns (MacFarlane & Kanaya, 2009). There is a distinction made in the DSM-IV-TR between Autism EDUCATION FOR AUTISTIC CHILDREN 13 and Autism Spectrum Disorders, which include Asperger’s Disorder and Pervasive Developmental Disorder Not Otherwise Specified, which have separate diagnostic criteria. Autism disorders span to form a range, referred to as the Autism Spectrum, from the generally high-functioning Asperger’s Syndrome, to the most severe form, called “Autistic Disorder”. Childhood Disintegrative Disorder and Rett’s Syndrome (affecting almost exclusively girls), also fall under the category of Pervasive Development Disorders, and although these children exhibit autistic-like symptoms, they are not actually forms of autism though they are often mischaracterized as such. If the child has some symptoms of Autistic Disorder or Asperger’s Syndrome, but does not meet the specific criteria for either, Pervasive Development Disorder—Not Otherwise Specified (PDD-NOS) is diagnosed (National Institutes of Mental Health). Individuals with autism are unique and exhibit symptoms varying in multitude and severity. Throughout this paper, the term ASD will refer to the conditions under the autism umbrella. As a result of communication and language deficits, autistic students tend to be visual learners, contrary to typical modes of instruction in general education classrooms that use lectures and class discussions as the primary mode of instruction (Fukunaga, Simonelli & Sperry, 2013). Students with severe forms of autism must usually be taught one-to-one for 30 to 40 hours per week, making it resource intensive and therefore expensive to provide. Children with autism are also prone to wandering and elopement, increasing the risk of injury or death (Anderson, et al., 2012; Lawlor & Solomon, 2013). A 2012 study showed 49% of participants had attempted to elope at least one time since the age of 4 years; 26% were missing long enough to cause concern; of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury (Anderson et al., 2012). Eloping behavior EDUCATION FOR AUTISTIC CHILDREN 14 places added stress and burdens on families. Some studies posit the cause for these behaviors by autistic children are to seek attention or to remove themselves from a demanding situation, such as therapy or classwork (Lehardy, et al, 2013). Although therapies offered in the educational setting have been found to alleviate some of the observable symptoms (Lovaas, 1987; Hein, 2013), first and foremost, autism is a medical condition and affected children suffer from the following conditions co-morbidly at higher levels than the general population: Epilepsy or seizure disorders (Bauman, 2010), Mitochondrial dysfunction (Oliviera, 2005); Gastrointestinal dysfunction (Bauman, 2010); Allergies, both environmental and to food (Altarac, 2008); Immunological and Autoimmune disorders (Gesundheit, et al, 2013). Although it is a medical condition affecting the brain’s neurology, it is generally excluded from health insurance coverage. Observable symptoms of autism include deficits in varying degrees to several developmental areas, which necessitate a variety of behavioral interventions and therapies be offered by the school system. These deficits include: Pivotal Behaviors: fundamental human behaviors that although basic, enable learning. These behaviors include responding to one’s name, maintaining eye contact, maintaining joint attention, imitation and orienting to social and non-social stimuli (Charman, 2003). Although these things come naturally to a typically-developing child, an autistic child must be taught these behaviors through intensive and repetitive trials. Social and Behavioral Deficits: characterized by an inability or lack of motivation to engage with others. These include impairment in non-verbal behaviors, such as gesturing, delayed peer interactions, little to no social reciprocity, and a lack of desire to share enjoyment or interests (Levy et al, 2009). The social disability associated with EDUCATION FOR AUTISTIC CHILDREN 15 autism presents a significant inability to understand social interaction, process social information and respond to non-verbal cues (e.g., pointing, imitation, or facial expression). Aggressive behaviors are not uncommon and must be eliminated. To function well in society, social and behavioral skills are of critical importance, and must be developed in the autistic child. Because of the importance of imitation in developing speech and general learning, social skills training must be addressed through educational plans developed in a comprehensive way to include the didactic teaching of social skills. Language and Communication Deficits: children with autism often have severe difficulties with speech and language (American Psychiatric Association, 2000), with those on the severe end of the spectrum often being non-verbal. Language is frequently repetitive or rigid, and may seem out of context or the child may engage in echolalia, where certain words or phrases are repeated over and over again (www.nidcd.nih.gov). Physical abilities—impairment in fine, gross and oral motor control is common in the autistic population (Shriberg, et al, 2011) thought to be a result of hypotonia (Bauman, 2010). Sensory Processing Disorders (SPD): difficulty processing and acting upon information received through the senses. SPDs create challenges in performing common daily tasks, such as tooth brushing, wearing clothing with zippers or tags, and being around loud noise or bright lights. The result of these challenges may be: depression, school failure, anxiety, behavioral problems, clumsiness, poor attention, frustration, and moodiness (Enwefa, R., Enwefa, S. & Nyarambi, 2012). The wide array of deficits associated with autism listed above levy a requirement on schools to provide Behavioral Therapy, Speech Therapy, Physical Therapy and Occupational EDUCATION FOR AUTISTIC CHILDREN 16 Therapy, and Psychological Counseling services at a minimum. Autistic children sometimes receive other services, as well, such as Community-Based Instruction and Social Skills training. Although autism was once thought to be a lifelong disorder, studies have shown children can improve dramatically or lose an autism diagnosis altogether (Fein, el al, 2013; Helt, 2008; Lovaas, 1987). UCLA researcher, Ivar Lovaas, introduced the concept of “best outcome” or “recovery” from autism (Fein, et al, 2013). Lovaas reported 47% of his cohort receiving intensive ABA interventions of 30 – 40 hours per week achieved normal IQ and were mainstreamed by first grade (Lovaas, 1987). Those who did not fully recover still made great strides toward a higher quality of life and independence. Why the Financial Aspects of Autism Matter in Providing a FAPE Autism is a very expensive disorder, both in terms of treatment and the costs passed onto society to care for afflicted individuals across their lifetimes. Autism places a substantial burden on families as well as public services, which has been shown to be greater than that of other chronic childhood illnesses (Flanders et al, 2006) and intellectual disabilities (Mandell et al, 2006); however, the numbers of children affected by autism are steadily increasing so will make increased demands on public services and resources. Children with autism grow up to become adults with autism and without proper treatment the burden they place on taxpayers is significant. Dr. David Fray, MD, Hawaii Department of Health Developmental Disabilities Division Chief, recently testified at a Hawaii State Legislative hearing that his department serves 300 adults with severe autism and the cost of each individual ranges between $200,000 to $900,000 per year (Fray, 2014). A key component of this issue is that treatment for autism exists at a nexus of medical and educational interventions, and as of this writing, only about one-third of American children EDUCATION FOR AUTISTIC CHILDREN 17 receive health insurance coverage for forms of behavioral therapy, commonly called Applied Behavior Analysis (ABA), which has been shown to effectively treat children with autism (Lovaas, 1987; Hein et al, 2003). To be effective in severe cases, a child must receive between 30 and 40 hours per week of one-on-one ABA services (Lovaas, 1987; Sharpe & Baker, 2007), making it very expensive and out of financial reach for most families. In fact, on average, medical expenditures for individuals with autism were 4.1 – 6.2 times greater than for those without an autism spectrum disorder (Centers for Disease Control, 2012). The expense associated with proven treatments that must be rendered intensively results in parents pressuring the schools for increased services. Students with autism also use more services than do children covered under different disability categories (Bitterman, et al, 2008), contributing to the cost of treatment. Schools are required to provide a FAPE to children across the autism spectrum, requiring a wide array of services cutting across areas of professional expertise (Bitterman, et al, 2008), making it difficult for schools to staff all needed specializations to meet the demand. At the same time parents are clamoring for services, school systems must adhere to a budget, while the numbers of students with autism are increasing. In 1992, 15,580 students in the United States were served under IDEA under the Autism category (idea.gov); by 2011, this number had significantly risen to 455,000 students (nces.ed.gov). As numbers continue to rise, so does cost. The Special Education Expenditure Project (SEEP) funded by the U.S. Department of Education, found the cost to public schools of educating a child with autism averaged $18,790 in 1999 dollars compared with $6,556 for a typical student without disabilities. Although autism compares in cost with other high-demand disabilities, those disabilities occur at lower frequencies and are relatively static in prevalence while autism is increasing. EDUCATION FOR AUTISTIC CHILDREN 18 The original intent of Congress under IDEA was to fund 40% of states’ cost in providing special education services beyond that of educating children without disabilities; however, the actual level of funding to the states has typically totaled approximately 8 – 10% of states’ total special education expenditures (Katsyiannis, Yell & Bradley, 2001) and IDEA has never been fully funded. Current funding in 2014 is just 15.3% (Media Center, 2014). Legislation to fully fund the act has been introduced several times without enough support for passage. IDEA placed a mandate on the states upon its authorization, but has not granted money to the states at the expected levels. An increasing autistic population results in ever-increasing demands on states’ already strained budgets and relief has not come from the federal government. The passage of IDEA resulted in multidisciplinary program development to meet the obligation to provide a FAPE without regard to cost of those services, creating a fiscal burden for federal, state and local educational authorities (Baker, Green & Ramsey, 2011). Simultaneously, parents and disability advocates apply pressure for increased and improved services, creating significant challenges for policy makers as they seek a balanced way to distribute resources (Baker, Green & Ramsey, 2011). There is tension between both sides as parents fight for the services they believe their child needs, and the school districts, which must manage to a finite budget. The Legal Requirement to Provide a FAPE As a result of several key pieces of legislation, the financial burden to provide a FAPE to children with autism falls primarily on our public school system; therefore a brief discussion of the progression of laws that mandate a FAPE is provided. Litigation has furthered refined the definition, therefore a discussion of key court decisions also follows. EDUCATION FOR AUTISTIC CHILDREN 19 In 1975, Congress passed the Education of the Handicapped Act (EHA). Prior to this bill’s passage, disabled children were denied access to education, and spent their lives sent away to live in institutions (Loefgren, 2011). EHA assured a Free and Appropriate Public Education (FAPE) to all children with disabilities, and was amended several times to replace “handicapped child” with “child with a disability”. It was amended in 1986 to guarantee a FAPE to children, ages 3 – 5 years, and to establish Early Intervention Programs for infants and toddlers. The 1990 amendment (P.L. 101-476) changed the name of the law to Individuals with Disabilities Education Act (IDEA), and required children, to the maximum extent possible, to be educated in a Least Restrictive Environment (LRE) and educated in a class with non-disabled children and extended eligibility to children with autism. IDEA Part B serves children ages 3 to 22 years of age; IDEA Part C serves children from birth to 3 years. Under IDEA, a FAPE is defined as special education and related services that are: a) provided at public expense, under public supervision and direction, and without charge; b) meet the standards of the State educational agency; c) include an appropriate preschool, elementary school or secondary school education; and d) are provided in accordance with the plan laid out in the Individualized Education Program (IEP) required under IDEA (Loefgren, 2011). Related services are defined as: …speech-language pathology and audiology services, interpreting services, psychological services, physical and occupational therapy, recreation, including therapeutic recreation, social work services, school nurse services designed to enable a child with a disability to receive a free appropriate public education as described in the individualized education program of the child, [and] counseling services, including rehabilitation counseling, orientation and mobility services. 20 U.S.C. § 1401(26)(A). EDUCATION FOR AUTISTIC CHILDREN 20 It is notable that Behavioral Therapy does not appear in this list; Applied Behavior Analysis and other forms of behavioral interventions are considered to be the standard of care for autism treatment (Lovaas, 1987). The omission of Behavioral Therapy has at times been interpreted to mean schools are not required to offer it, despite its proven success in treating autism (Lovaas, 1987). In 1997, IDEA was revised as P.L. 105-17 to further strengthen the rights of disabled students. It extended LRE to mean all students would have access to the general curriculum, and implied this should be defined as the general education classroom. IDEA requires the use of Individual Education Programs (IEP)s for each student requiring special education, which lists goals and objectives, and accommodations the school will provide to the child. Educating students with autism requires all areas of the child’s disability be addressed, and these differ significantly from individual to individual, even with the same diagnosis of autism; therefore interventions are highly specialized for each child and it is not possible to develop common programs for students. An IEP is a multi-disciplinary, team-developed written plan by that includes the following: (1) "a child's present level of academic achievement and functional performance," (2) "measurable annual goals," (3) "services and supplementary aids ...to be provided to the child," (4) "the extent ... to which the child will not participate ... with nondisabled children in a regular class," (5) "any... accommodations that are necessary to measure ... academic achievement . . . on State and district-wide assessments," and (6) "the frequency, location, and duration of those services" (20 U.S.C. § 612.5A). Simply put, the IEP is the contract between the school and the family of what services will be provided to assure the child a FAPE. EDUCATION FOR AUTISTIC CHILDREN 21 Section 612.5A of IDEA goes on to state, “To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily” (20 U.S.C. § 612.5A). Because of this language, the IEP must consider the general classroom as a starting point for meeting the child’s needs and removal of the child from the general education classroom is only to be done when the extent of the child’s disabilities would prevent her/him from accessing a FAPE. The IEP lays out the duration and frequency of services the child will receive, where the child will receive those services, and is the tool used by schools to record and track goals and objectives individualized to the students’ specific needs (Ruble et al, 2010). However, service provision and parent satisfaction are significant issues because of the legal mandate of IDEA (Bitterman, et al, 2008). Of the main provisions of IDEA, three are directly related to services: the requirement to provide a FAPE; development and implementation of an IEP; and placement in the LRE (Bitterman, et al, 2008). Although other components of IDEA have been the basis of litigation among parents of children with autism (Zirkel, 2002), the majority of cases relate to the provision of appropriate services as required by law, vice optimal services, which are not a requirement (Rowley, 458 U.S. at 198). In 2004, IDEA was reauthorized to ensure services to children from birth to age 21 to allow for “equality of opportunity, full participation, independent living, and economic self- sufficiency for individuals with disabilities” (IDEA 2004; p.118; statute 2651D) as a part of a EDUCATION FOR AUTISTIC CHILDREN 22 FAPE. These services include life skills training, such as learning bus schedules, money exchange, ordering in a restaurant, as well as job skills. IDEA has offered untold opportunities for children with disabilities, but the lack of a clear definition of “appropriate” has opened the door for litigation by families challenging the provision of a FAPE. Intensity of services is a key issue in many of the ABA cases, with parents often requesting that the school fund the recommended 30 to 40 hours a week of therapy with an extended school day to be conducted at the child’s home or in the child’s community, and the school district countering with fewer hours of ABA and a more intensive in-school component (Mandlawitz, 2002). While both sides, families and schools, have a common goal of educating autistic children, tension arises between the two because of increasing need for limited resources. Use of Evidence-Based Treatments in Autism There is increasing research demonstrating there are effective interventions associated with favorable outcomes for students with autism and there are evidence-based practices for treating autistic students based on research (Fein et al, 2013; NAC, 2009; Helt, 2008; Lovaas, 1987). Applied Behavior Analysis, or ABA, is based on Skinner’s principles of verbal behavior and is the most common form of treatment for autism. A review of literature from the 1970s through 2013 revealed a wide variety of interventions and programs for children with autism to address the following deficit areas: social and pivotal skills, play skills, communication and language, adaptive behavior, motor skills and sensory needs (deBoer, 2009; Simpson, et al, 2003). The purpose of this literature review was to show the impact proper treatment can have in improving the lives and experiences of children with autism. The National Autism Center conducted a comprehensive study to identify the level of research support for educational and behavioral interventions for children and young adults with EDUCATION FOR AUTISTIC CHILDREN 23 autism with a goal of assisting caregivers and educators in appropriate treatment selection (NAC, 2009). This study identifies treatments and rates them using a Scientific Merit Rating Scale by reviewing the experimental rigor of the research design, the quality of the dependent variable, evidence of treatment fidelity, demonstration of participant ascertainment and the generalization of the work (NAC, 2009). It is the most recent attempt to develop standardization for autism programming. A review of these programs will be provided in Chapter 2. Although there are different approaches in programs, the basic interventions are the same and consist primarily of identifying goals in terms of specific behaviors to be altered; recording target behaviors; identifying effective reinforcers; extinguishing undesirable behaviors and shaping desired behaviors; as well as prompting and prompt fading; and as treatment progresses, development of chaining, generalization, rules, imitation, modeling, as well as other well-known behavioral procedures (Sundberg & Michael, 2001). Evidence-based programs should be at the heart of the provision of a FAPE for autistic children. Special Education in Hawaii Because this study is Hawaii-centric, a discussion of the school system in the state and background to explain how special education services is provided below. The history of special education provisioning in Hawaii is important because it could affect parents’ perceptions about the quality of their child’s education. Hawaii is the only state in the nation to have a single, unified state-wide public school system. Founded in 1840, the Hawaii education system is centralized with only one district and is the oldest school system west of the Mississippi river. There is one centralized school board, located on Oahu; the Board of Education (BOE) has jurisdiction over all public schools across the state. An advantage of centralization is that funding, staffing and facilities are evenly EDUCATION FOR AUTISTIC CHILDREN 24 dispersed, but it is also a slow bureaucracy, which hinders innovation and flexibility (Benitez, 2011). For the 2013-2014 school year, enrollment in Hawaii's public schools grew by 2,000 students to 185,273 (www.hawaiipublicschools.org), further straining resources. Children in Hawaii are twice as likely as Mainland children to be privately educated; 1 in 6 children, or about 17% attend private schools (Pacific Business News) compared with approximately 8 - 9% nationwide (www.nces.ed.gov). This reliance on private schools speaks to a lack of confidence in the public education system. Because of the legal requirement for public schools to educate autistic children these children largely attend public schools, but the level of mistrust is high. The Hawaii Department of Education is analogous to the State Education Agency (SEA), and although there is only one centralized district in the usual connotation of the word, there are seven geographic districts, which are analogous to Local Education Activities (LEA) in Mainland schools. The role of the SEA is to monitor and enforce compliance and provide leadership and guidance to ensure compliance and quality of local education programs. The centralized organization results in functions that would be done by local school districts on the Mainland being done at the state education agency level, and in many operational areas, the state performs the functions of an LEA, while also providing an oversight role. Hawaii has a difficult and unique history where special education is concerned, and special education children in Hawaii still lag far behind their peers on the Mainland (Vorsino, 2010). Inclusion rates are lower than Mainland counterparts; most special needs children in Hawaii spend much or all of their school day outside the general education setting at far higher rate than the national average. This results in a watered-down curriculum and stigmatization by peers. Special education achievement levels have remained deficient, despite enormous EDUCATION FOR AUTISTIC CHILDREN 25 spending increases, amounting to 37 percent between the years 2004 – 2010 (Vorsino, 2010). Still, Hawaii has seen improvements after the implementation of the Felix Consent Decree, which the state entered into in 1994, after a class-action lawsuit revealed a system that was seriously deficient in providing services for children with special needs. Felix caused Hawaii to spend an estimated $1 billion (Vorsino, 2010) for special education services and resulted in immense reforms for special needs children. The Felix Consent Decree The Felix Consent Decree of 1994 profoundly impacted Hawaii special education. The decree, approved by the U.S. District Court came as a result of litigation brought by Jennifer Felix in 1993, claiming the State of Hawaii had violated the IDEA because it failed to provide her with adequate services necessary for her education (Felix v. Lingle). In March of 1994 this claim was expanded into a class action lawsuit involving more than 13,000 children in Hawaii. As a result of this lawsuit, the Hawaii Department of Education and Hawaii Department of Health were forced to acknowledge they had violated the federal IDEA and to prevent a federal takeover of its schools, Hawaii entered into a consent decree. Under the Felix Consent Decree, Hawaii was obligated to fully implement a special education system by June 30, 2000. The Hawaii Department of Education agreed to provide all required special educational services and the Hawaii Department of Health agreed to provide all required mental health services. Both agencies agreed to create and maintain an adequate system of care to provide a “continuum of services, placements and programs necessary for disabled students” (Felix v. Lingle). A mandate was established requiring Hawaii to institute a state-wide special education system in compliance with the principles of The National Institutes of Mental Health’s Child and Adolescent Service Program (CASSP). CASSP principles emphasize values such as family EDUCATION FOR AUTISTIC CHILDREN 26 strengths, youth participation in care, straightforward access to services, use of least restrictive environments, continuity of care and cultural sensitivity (Chorpita & Donkervoet, 2005). Under Felix, the plaintiff class was defined as, “all children and adolescents with disabilities residing in Hawaii, from birth to 20 years of age, who are eligible for and in need of education and mental health services, but for whom programs, services and placements are either unavailable, inadequate, or inappropriate because of lack of a continuum of services, programs, and placements” (Felix v. Lingle). Autistic children meet the definition of the plaintiff class under Felix and are entitled to services through the Hawaii Department of Education. As a result of Felix, Hawaii was required to significantly increase its investment in special education programs to dramatically expand and improve services to disabled students. This proved to be challenging, and after two extensions, the State was held in contempt of court in 2000 for failing to provide adequate care. The State was given authority to bypass state procurement regulations in order to meet 56 quality benchmarks. However, by 2004, the State was found to be “in substantial compliance”, and in June 2005 the State was released from the Felix Consent Decree (Chorpita & Donkervoet, 2005) and 12 years of federal oversight. Felix had a significant impact on Hawaii’s educational system; the special education system was totally revamped, and today there is much more emphasis placed on identifying special needs and ensuring services are delivered. But in its rush to compliance, special education programs expanded under Felix without regard to program outcomes. In an effort to quickly be in compliance with the decree, a lot of money was thrown at the problem without necessarily addressing the children’s individual needs. The State of Hawaii has since made efforts to remedy this deficiency and hired an external consulting firm to apply standards of accountability to the special education program in Hawaii. EDUCATION FOR AUTISTIC CHILDREN 27 Written Complaints and Due Process Hearings Written complaints are declining in Hawaii, which reflects the national trend. However, in the majority of states complaints vastly outnumber hearing decisions, while Hawaii’s rate of written complaints is only a half to a third the rate of due process hearing decisions. The much higher number of complaints in Hawaii that proceed to hearing decisions could indicate more serious problems (SEAC, 2011). Across all special education categories, Hawaii is well above the national yearly average of 28.1 Hearing Requests, with an average of 63.1 Hearing Requests over the school years 2005 through 2009 (Hawaii Department of Education, 2011). There are a large number of complaints filed that result in costly due process hearings, and the preponderance of these are autism-related. For example, in SY2007 – 2008, of 114 Hearing Requests, 35 were autism-related; there is a large disparity in the number of students with autism involved in due process hearings compared with their presence in the special education system in Hawaii. IDEA-eligible children with autism made up 38% of the Due Process requests and 64% of written complaints in SY2009 – 2010 (Hawaii Department of Education, Superintendent). Overall, for the five year period from SY2005 – 2006 through SY2009 – 2010, the highest number of hearing requests came from students with Autism Spectrum Disorders (SPIN, 2010). The Hawaii Department of Education has spent about $1M per year in the last two years on lawyers’ fees for Due Process cases, and an untold amount on settlement awards (www.staradvertiser.com). It is not clear from the existing literature why the incidence of complaints, Due Process and litigation is higher in Hawaii that the rest of the United States. The history of neglect of special education in Hawaii, although since rectified, has tarnished the reputation of special education in Hawaii’s schools. EDUCATION FOR AUTISTIC CHILDREN 28 Mana District Mana is the smallest of four districts on the island of Oahu, the state’s population center, and services 30 schools: as of this writing, the largest administrative district has 40,959 students; Mana serves 15,189 students. Of these 15,189 students, 1,765 (or 11.6%) qualify for special education services (www.hawaiipublicschools.org); of students in special education, 206 (11.7%) students in Mana District have an autism diagnosis (Sutton, 2014); this figure has increased 14% since the 2009/2010 School Year. For the 2013 – 2014 School Year, the State of Hawaii budgeted $42,610,909 for services for students with ASD; of this amount, Mana received $3,351,683 (Sutton, 2014). Mana District states its vision is to be the preferred and most trusted resource serving students with Autism Spectrum Disorders, and that its team of autism professionals, named “The A-Team”, will stay up-to-date on current research and techniques for teaching students with autism (Sutton, 2014) to implement evidence-based teaching techniques. Current staffing for the Mana A-Team is at 63 employees, with a goal of growing to 106 employees by 2016. Building in-house capacity is a primary goal. Since December of 2009, Mana has increased its autism services staff by 327% and estimates it has saved the State of Hawaii $1,157,816 in 2013 by using DOE paraprofessionals instead of contacted employees (Sutton, 2014). In an effort to reduce costs to the State, Mana has developed a plan to recruit, train and retain autism professionals to reduce the amount of contracted workers. As of this writing, there are seven Board Certified Behavior Analysts (BCBA) Autism Consulting Teachers on Mana staff; on the island of Oahu there are a total of 72 BCBAs, most of whom are in private practice; the fact that nearly 10% of BCBAs on Oahu are employed by Mana District is impressive. BCBA certification is granted through the Behavior Analyst Certification Board to address EDUCATION FOR AUTISTIC CHILDREN 29 professional credentialing and is an assurance certificate holders must meet educational requirements as well as clinician experience in treating individuals with autism. To hold BCBA certification, a minimum of a master’s degree in a related field, accompanied by graduate courses in behavior analysis, and 1500 hours of supervised field work must be accomplished. In addition to increasing its in-house capacity, Mana has developed six Model Classrooms that were remodeled to appeal to autistic children and contain kitchens and comfortable living areas, as well as five Intensive Training Classrooms consisting of a Preschool Fully Self-contained classroom; a Preschool inclusion classroom; and classrooms in elementary, middle and high schools. These classrooms provide a state-of-the-art platform for teacher learning where they receive instruction via iPad applications, video, real-time video chat and coaching, and on-line courses. Mana District uses Standards-Based Education programs for their autistic students and reports that 30% of targeted students (K – 12) that use their Lexia Technology Based Reading and Math programs perform at grade level in reading and math (Sutton, 2014). Mana District has reduced the requests for Due Process by 83% over the past three school years (Sutton, 2014); Mana prevailed in two-thirds of these cases and as of this writing, there have been no requests for Due Process since August 2012 (Sutton, 2014). Purpose of the Study This study explored what autism programming and services constitute the current practice for educating autistic children in Hawaii’s Mana District, and evaluated the perspective of parents of autistic children in their satisfaction with different aspects of their child’s FAPE. Hawaii has the highest Due Process rates under IDEA in the United States on behalf of children EDUCATION FOR AUTISTIC CHILDREN 30 with autism (Benitez, 2011), which suggests there is a disconnect between the educator’s estimation of appropriate services or their application and that of the parents. Research Question The following question will guide this study: What are the key factors parents of autistic students in Mana District, Oahu, Hawaii expect in the provision of a FAPE for their children? To address this question, I interviewed parents of seven children with autism whose children attend Mana District public schools to understand how they assess the appropriateness of their child’s education, what factors are important to them in the provision of services and what areas of dissatisfaction exist. To gain some balance from parental opinions, using questions that mirrored those the parents were asked, I interviewed four behavior therapists who treat children on Oahu who attend or have attended public schools. Although they noted similar strengths and weaknesses as their parent counterparts, their responses differed from those of the parents in their perspective was technical regarding assessment of children, the appropriateness and the proper implementation of programs. Significance of the Study Lawsuits relating to the appropriateness of school programs for autistic children represent the fastest-growing and most expensive area of litigation in special education (Etscheidt, 2003). Based on high levels of litigation across the United States there is currently a lack of agreement between many parents and school personnel regarding appropriate programming for autistic students (Arick et al, 2005). Hawaii has the highest rates of Due Process hearings in the United States (Benitez, 2011), and autism cases represent approximately 35% of the caseload, despite the fact that autistic students only comprise about 6% of the special education student body. Clearly parents and schools do not agree what a FAPE for autistic students should be. Therefore, EDUCATION FOR AUTISTIC CHILDREN 31 this study proposes to identify what factors affect the perception of the provision of a FAPE from a parent’s point of view with respect to factors relative to the services provided to their child. Next, I will compare the educators’ judgment in the form of the educational services provided to that of parents of autistic students and therapists on Oahu who treat children with autism who attend DOE schools to determine what common differences arise, e.g., insufficient quantity of services, inappropriate or insufficient programs, quality of services, or quality of providers, and determine if social validity of the services and interventions offered exists among parents of autistic students. The outcome of the paper will be the identification of areas where parents feel their child’s school is lacking or successful in providing a FAPE. This will allow the school system to understand where it is succeeding and where improvements can be made. Conceptual Framework Chapter two will review the following areas of literature: 1) Legislation and Litigation relevant to providing an appropriate education to autistic students; 2) Evidence-Based Treatments for autism; and 3) Social Validity Theory. These three bodies of literature serve as the conceptual framework of this study. The figure below depicts the framework pictorially. FAPE has a legal basis through IDEA, the definition of which has been refined through litigation and court decisions that have affected the way the law is interpreted for autistic children. Research has yielded programming and interventions that can successfully treat autistic children. The law coupled with evidence-based treatments form the basis of the FAPE offered by the school district. Moving to the next level, parents apply social validity to their child’s services and interventions, i.e., a value judgment on the sufficiency of the FAPE provided by the school. EDUCATION FOR AUTISTIC CHILDREN 32 Through the social validity lens, I assessed what parents believe constitutes a FAPE for their children and what they found to be lacking in the school’s provisioning of services. Figure 1. Conceptual Framework Handicapped children, to include autistic children, were once excluded from accessing an appropriate public education. The IDEA was a cornerstone piece of legislation that mandated children with disabilities be provided with a FAPE; litigation when concerned parties felt the intent of the law was not being upheld were crucial to laying out a structure to outline the provisions of an appropriate education. Litigation continues to refine the interpretation of a FAPE for autistic students. A review of evidence-based treatments concludes that there are therapies in place that can mitigate the symptoms of autism and can allow the child to learn. Finally, a review of research of social validity theory as it pertains to autism was conducted. These bodies of literature influenced the purpose, problem and questions explored in this study. EDUCATION FOR AUTISTIC CHILDREN 33 Social Validity Theory has been proposed as a means to define autism programming while reducing conflict between schools and families. A social validity survey of evidence- based practices in autism education found socially validated interventions can be used to evaluate existing autism curricula and develop training for professionals, parents and students to improve public school autism programs (Callahan, Henson & Cowan, 2007). This study will evaluate parents’ responses to questions regarding autism services offered and determine the level of social validity as perceived by parents, and specifically which aspects of their child’s educational program they feel are lacking. Interview questions will fall into the social validity framework to ascertain parental satisfaction with: goal significance; acceptability of interventions and programming; and the effects or outcomes of the interventions. Assumptions For the purposes of this study, I assumed services and interventions offered are considered to be a FAPE by the educator. I assumed educators have properly evaluated their students and have recommended the programs and interventions they believe provide a FAPE. I also assumed the school system believes it is complying with the intent of IDEA. Assuming educators have made recommendations for individual student’s programming neglects the effects a constrained budget could have in suggesting interventions for students. Limitations I have identified the following limitations with this study: first, I have chosen what has been named the model district for autism education in the state of Hawaii. Mana District is creating “model classrooms”, which will exemplify what is thought to be the best state-of-the- practice in autism education and will pilot this model in Hawaii. To date, there are no classrooms of this caliber outside Mana District. Second, my sample space will be limited and EDUCATION FOR AUTISTIC CHILDREN 34 not necessarily representative of the views of the majority of parents of autistic children who are enrolled in Mana District. Third, the qualitative nature of the study and the uniqueness of perceptions of education in Hawaii, and because of the cultural differences with the Mainland may mean it is not representative of the larger United States. Finally, because participation in the study was entirely voluntary, it is possible participants wanted a voice for their areas of dissatisfaction; in fact, even parent participants who seemed satisfied with their child’s FAPE had complaints. Definition of Terms Applied Behavior Analysis (ABA) is a process of analyzing behaviors and identifying goals in terms of specific behaviors to be altered; recording target behaviors; identifying effective reinforcers; extinguishing undesirable behaviors and shaping desired behaviors; as well as prompting and prompt fading; and as treatment progresses, development of chaining, generalization, rules, imitation, modeling, as well as other well-known behavioral procedures (Sundberg & Michael, 2001). For the purposes of this study, it will have a broad definition and encompasses the range of behavior modification programs described in Chapter 2, unless otherwise specified. Asperger’s Syndrome is generally considered to be a high-functioning form of autism characterized by social impairment, odd prosody in speech patterns and repetitive behaviors. Autism has among its core features impaired social interaction, delayed and disordered language, and isolated interest areas. Other features can include poor eye contact, stereotypic and repetitive behaviors, sensory processing dysfunction, and an insistence on sameness (Bauman, 2010). EDUCATION FOR AUTISTIC CHILDREN 35 Autism Spectrum Disorder (ASD) refers to a range of behaviors and disabilities experienced by a person with autism. Due process hearings are the principal vehicle for resolving disputes between parents of children with disabilities and school districts concerning identification, evaluation, placement, or provision of free and appropriate education (Slater & Norlin, 2007). Echoic is a behavioral analysis term for a child’s ability to repeat a word or phrase. Free and Appropriate Public Education (FAPE) is special education and related services that are provided at public expense, under public supervision and direction, and without charge; meet the standards of the State educational agency, include preschool, elementary school, or secondary school; and are provided in conformity with an individualized educational plan that is calculated for the student to learn (Slater & Norlin, 2007). Intervention refers to programs that seek to modify behavior, either to elicit desired behaviors or extinguish undesirable behaviors. Intraverbal is a behavioral analysis term for the ability to respond in words, phrases or sentences to the words, phrases or sentences of others. “Filling in the blank” is an example of intraverbal behavior, as would be the response to a question that relies on memory, e.g., “How was your day?” Intraverbal behavior is essential for conversations, social interactions, memory, problem solving and entertainment and is the fundamental element of academic and intellectual behavior (Sundberg, 2010). Least restrictive environment is the location or environment in which special education services are provided. The removal of a student into a separate setting occurs only when the student cannot be appropriately educated in the general education classroom with the use of EDUCATION FOR AUTISTIC CHILDREN 36 supplementary aids and services. It is assumed to be the general education classroom unless otherwise specified. Litigation is the process by which parties to a dispute have it resolved by a court; to contest in legal proceedings. Mand is a behavioral analysis term for request. It is frequently the first verbal operant taught to autistic children because asking for a desired item is highly motivating. Methodology refers to the specific type of behavioral therapy that will be provided. Although all are based on behavioral analysis, there are different approaches to implementation. Programming refers to the range of goals for the child. These may include social interactions, quality of speech articulation, language comprehension, eliciting or extinguishing behaviors, as examples. Related services include transportation, assistive technology devices, speech and language services, occupational therapy, and physical therapy (20 U.S.C. §1400 et seq.). Services refer to the range of therapies offered to remediate autism, to include Behavioral Therapy, Occupational Therapy, Physical Therapy, and Speech Therapy. Special education services are defined as “specially designed instruction, provided at no cost to parents, to meet the unique needs of a child with a disability” (20 U.S.C. §1400 et seq.). Tact is a behavioral analysis term for labeling an item, e.g., a child sees a cat and says, “Cat.” EDUCATION FOR AUTISTIC CHILDREN 37 CHAPTER TWO: LITERATURE REVIEW The path to providing a FAPE to autistic children has been a long one and is being defined and redefined through legislation and litigation. To illustrate how a FAPE came to be mandated and how it is defined, Section one presents a historical overview of special education law as it evolved to mandate the provision of a FAPE, the circumstances that led Congress to enact Public Law 94-102 in 1975, now commonly referred to as IDEA, and how the law has changed over time. Inclusion and discussion of noteworthy litigation that has further refined the definition of an appropriate education is included. A brief discussion of the IEP is included in this section because it is the foundation of IDEA and also the source of conflict between educators and parents. Section two is a discussion of evidence-based methodology and programming for autistic students, which I submit should form the basis of an appropriate education for autistic children. Section three is a review of studies focusing on parental satisfaction with their autistic child’s public education; and finally, Section four presents a review of social validity theory as it applies to autism and behavior analysis. The Legal Framework for the Provision of a FAPE for Autistic Students Prior to the 1970s, disabled children received little to no formal public education. When disabled children were allowed to attend school, they were often placed in the same generic special education classroom, which did not provide for their individual needs (Wright & Wright, 2011), and because children with special needs were segregated from their typically-developing peers, special education classrooms were often in undesirable locations, such as trailers or school basements (Wright & Wright, 2011). The Supreme Court decision in Brown v. Board of Education, Topeka, Kansas (1954) determined schools could not segregate students on the basis of race, and found that separate but equal did not constitute equality. Although it did not EDUCATION FOR AUTISTIC CHILDREN 38 mention disabilities, this case became the basis of lawsuits and legislation to require inclusive education for disabled children by reframing the denial of equal protection based on race to denial by basis of disability. After Brown, parents began to bring lawsuits against their school districts for excluding and segregating children with disabilities, which they successfully argued amounted to discrimination (Wright & Wright, 2011). During the 1970s, two important cases that became catalysts for change reached the federal courts, resulting in judgments that further defined the rights of children with disabilities to an appropriate public education. In 1971, Pennsylvania Association of Retarded Children v. Commonwealth of Pennsylvania became the first right-to-education suit in the United States and established the right to a free education for children between the ages of 6 and 21. The federal district court ruled that children diagnosed with mental retardation in Pennsylvania were entitled to a free public education, and further that they should wherever possible be educated in general education classrooms (Park v. Commonwealth, 1971). This decision was expanded to include all children with disabilities in 1972 through Mills v. Board of Education of District of Columbia. In Mills, a suit was brought on behalf of seven students with mental illness and mental retardation, who claimed the District of Columbia School Board was denying their right to a free public education. The Board claimed the children had exceptional needs and the cost of providing educational services was too expensive; therefore the children were not able to attend school. In this case the court held that free public educational services or a suitable private alternative paid for by the board of education must be provided based on the students’ individual needs without regard to cost (Mills v. Board of Education of the District of Columbia, 348 F. Supp 866 (D. DC 1972)). EDUCATION FOR AUTISTIC CHILDREN 39 PARC and Mills formed the basis of the requirement to provide a Free and Appropriate Public Education to children with disabilities. Then in 1972, Congress opened an investigation into the status of disabled children and found that millions of children were not receiving an appropriate education. Realizing there were economic implications to society in failing to educate these children, as well as a moral imperative to do so, Congress determined: Parents of handicapped children all too frequently are not able to advocate the rights of their children because they have been erroneously led to believe that their children will not be able to lead meaningful lives…It should not…be necessary for parents throughout the country to continue utilizing the courts to assure themselves a remedy… (USCCAN 1975, p. 1433) Hoping to reduce the need for parents of special needs children to rely on the court system, in 1975, Congress passed Public Law 94-142 (Education of All Handicapped Children Act); this law assured a Free and Appropriate Public Education (FAPE) to all children with disabilities, and was amended several times to replace “handicapped child” with “child with a disability” (P.L. 94-142). It was modified in 1986 to guarantee FAPE to children, ages 3 – 5 years, and to establish Early Intervention Programs for infants and toddlers. The 1990 amendment (P.L. 101-476) renamed the law Individuals with Disabilities Education Act (IDEA), and required children, to the maximum extent possible, to be educated in the Least Restrictive Environment (LRE) and where practical, to be educated in a class with non-disabled children (P.L. 101-476). It was through this act that eligibility was extended to children with autism. Prior to this, as child with autism would only qualify for special education services under other classifications, such as mental retardation (Zirkel, 2011). Beginning in 1991, children with EDUCATION FOR AUTISTIC CHILDREN 40 autism began receiving special education services and were officially counted in federal statistics (Joy, 2008). To provide children with a FAPE, schools and parents work together to develop an individualized education program (IEP) (Schaffer v. Weast, 546 U.S. 49, 53; 2005), defined as a “written statement for each child with a disability that is developed, reviewed, and revised in accordance with section 1414(d) of this title” (20 U.S.C. § 1401(14). The IEP is, in effect, a “comprehensive statement of the educational needs of a handicapped child and the specially designed instruction and related services to be employed to meet those needs” (Burlington, 471 U.S. at 368). The IEP is the cornerstone document in providing a FAPE that serves to direct and monitor all aspects of a student’s special education program, to include educational needs, goals and objectives, placement, evaluation criteria, present levels of educational performance, evaluation criteria, and duration of programming modification (Drasgow, Yell, & Robinson, 2001). However, it is often the source of conflict between parents and schools. A 2007 study examining parental perceptions toward IEP meetings found that parents believed educators did not value parents as equals or properly adhere to IEP objectives (Fish, 2007). Parents in this study indicated educators were more apt to listen to their concerns when they knew parents were knowledgeable of special education law; further, parents believed the quality of IEP meetings could be improved if school districts would educate parents about special education law (Fish, 2007). Rock (2000) asserts parents enter the decision-making partnership with the schools at a distinct disadvantage because they lack the terminology, expertise, and finances that their professional counterparts possess (Rock, 2000). EDUCATION FOR AUTISTIC CHILDREN 41 A state must comply both procedurally and substantively with the IDEA (Amanda J. v. Clark Cnty. Sch. Dist., 267 F.3d 877, 881 (9th Cir. 2001)), but IDEA does not define the particular services or substantive level of education that must be provided to a child. However, the state must provide an education that is “reasonably calculated to enable the child to receive educational benefits” (Rowley, 458 U.S. at 206-07). IDEA prescribes a set of extensive procedures that must be followed in the formulation of an IEP specific to each child’s unique needs (20 U.S.C. § 1414). IDEA also stipulates a set of procedural safeguards that help ensure that a child receives a FAPE (Id. § 1415). A child may file a timely complaint and request a due process hearing for any violation of the IDEA (Id. § 1415(b), (f)). In 1997, IDEA was revised as P.L. 105-17 to further strengthen the rights of disabled students. It extended LRE to mean all students would have access to the general curriculum, and implied this should be defined as the general education classroom. IDEA requires the use of Individual Education Programs (IEPs) for each student requiring special education. The IEP must consider the general classroom as a starting point for meeting the child’s needs; if they cannot be met in the general classroom, an explanation is required in the IEP (Dybvik, 2004). The law was reauthorized in 2004 and entitled, The Individuals with Disabilities Education Improvement Act (IDEIA), although it is still generally referred to as IDEA. IDEIA (2004) emphasized not only an access to education through the general curriculum, but also the integration and inclusion of disabled students with their non-disabled peers (Joy, 2008). Section 300.34 requires the provision of related services to assist the disabled child to benefit from special education; however, behavioral services were not specifically listed as a related service. Subsequent court decisions strongly indicate ABA qualifies as a related service within the EDUCATION FOR AUTISTIC CHILDREN 42 meaning of the IDEA (Holland, 2010). Behavioral services, usually forms of Applied Behavior Analysis (ABA) are often at the crux of autism litigation. In fact, there have been a number of cases where IDEA has been interpreted with respect to ABA, where the courts’ decisions indicate that ABA can be part of an individual’s FAPE. To date, there are no Supreme Court rulings regarding the provision of ABA services; however there are several important decisions from circuit courts of appeal have made rulings regarding ABA under IDEA. One particularly significant case was decided by the Sixth Circuit Court in Deal v. Hamilton County Board of Education where the court held that a school district refusing to consider providing ABA to an autistic student did not account for his specific educational needs, and constituted a procedural violation of the IDEA (Holland, 2010). There have been several other cases in which a child’s FAPE included ABA (County School Board v. Z.P., Wikol v Birmingham Public Schools Board of Education), which would seem to indicate in some cases ABA can and should be part of a child’s FAPE. In some cases where ABA was not part of a child’s FAPE a court has required the school district to include it (Holland, 2010). In 2002, Congress passed P.L. 107-110, better known as the No Child Left Behind (NCLB) Act. This law placed increased accountability on schools for to achieve Adequate Yearly Progress (AYP) through yearly assessments. Where IDEA was about access and inclusion, NCLB addressed quality of education. Educators and parents alike praised this legislation because it mandated children with disabilities to be part of the assessment process (Quinn, 2011). This type of inclusion is heartening to parents, who often feel their children are left out of academic and social activities. EDUCATION FOR AUTISTIC CHILDREN 43 Since the 1990, educational programming for children with autism has become an issue for a variety of reasons, which include first and foremost, the increase in identification of children with autism, to include reclassification of children who were previously assigned to other disability categories; publicity surrounding different methodologies used to treat autism; parental advocacy for the use of specific methodologies; shortages of qualified personnel; and the demand for due process to ensure their children receive appropriate services (Mandlawitz, 2002). Hearing officers and judges have used IDEA to determine whether children are receiving a FAPE. Although there are legal protections to provide for an appropriate education for autistic children, there have been court rulings that have weakened a parent’s right to challenge provision of FAPE under IDEA. These decisions have placed limitations on the IDEA’s provision of services to children with autism. A seminal court case that reached the Supreme Court was Board of Education v. Rowley. In Rowley the Court ruled that although IDEA requires that a FAPE be provided, the state has no requirement to educate a child to their maximum potential, but rather provide enough to achieve a minimum level of accomplishment (Holland, 2010; Unumb & Unumb, 2011). The Supreme Court stated that the goal of IDEA was to provide “appropriate, not optimal, special education, and to that end courts may not substitute their notions of sound educational policy for those of the school authorities” (Rowley, 458 U.S. at 198, p. 206). This decision was upheld in Lachman v. Illinois (1988) and Burilovich v. Board of Education Lincoln Consolidated Schools (1998); in both of these cases parents questioned the methodology used to educate their children. In Lachman, the court ruled that as long as the school district is providing the child with a FAPE, parents to not have a right to compel a school district to provide a specific program or employ a EDUCATION FOR AUTISTIC CHILDREN 44 specific methodology. Furthermore, is the program instituted by the school district was reasonably calculated to provide benefit to the child, a comparison in program methodologies is not warranted (Entscheidt, 2003). The district court concluded, “The Court need not take sides in this philosophical debate (Lovaas versus TEACCH). It is enough that the school system’s proposed program is appropriate” (30 IDELR, p. 967). Parents of autistic children often have clear preferences for their child’s programming and methodology employed, and there is an existing lack of agreement between many parents and school personnel regarding appropriate programming for autistic children (Arick et al, 2005; Yell et al, 2003). Callahan (2007) found there is not universal acceptance of best practices in autism programming, as well as a shortage of qualified school personnel to carry out the programs. Rowley introduced the phrase “basic floor of opportunity” in relation to IDEA, establishing that school districts are required to provide only as much as is necessary for the child to pass. There is no requirement to provide services such that the child can excel (Holland, 2010). This is in direct conflict with the parents’ desires to have their children educated to a level commensurate with potential. As a result of the Rowley decision a number of lower courts have made determinations that IDEA compliance can be determined if an IEP can be “reasonably calculated to enable the child to receive educational benefits” (Holland, 2010, p. 1271). Further, many children are unable to access ABA under IDEA because courts have ruled that school districts are entitled to take economic considerations into account when determining what constitutes a FAPE (Holland, 2010). EDUCATION FOR AUTISTIC CHILDREN 45 The Education of Handicapped Children, later codified as IDEA, is classified as an important Civil Rights Act. The passage and implementation of these acts has made inclusive education possible for children with autism. When the predecessor to IDEA, The Education for All Handicapped Children Act of 1975 was passed, the prevalence rate for autism was approximately 1 in 5000 and the term “autism” appeared in only 15 reported cases (Unumb & Unumb, 2011). However, with the incidence rate steadily climbing, the use of the courts is also steadily increasing to ensure the core concepts of IDEA are upheld. These core concepts are the completion of an appropriate evaluation, development and implementation of an IEP, placement in the least restrictive learning environment—the LRE, parent and student participation in decision-making, and provision, and enforcement of procedural safeguards (Mandlawitz, 2002). These principles figure prominently in autism decisions. Zirkel (2011) found that children with autism accounted for about one-third of a comprehensive sample of published court decisions concerning FAPE and LRE under IDEA. Another major finding was in comparing the litigation percentage in the special education category between the years 1993 to 2006, the ratio of autism cases to other special education suits was approximately 10:1 (Zirkel, 2011). At the time of writing, only about one-third of autistic children in the United States have health insurance coverage for autism treatment. The result of this inequity is parents pressing school districts for more services to treat their children’s condition with an increased willingness to proceed to Due Process if the parent does not feel his or her child’s education is appropriate to this child’s needs (Zirkel, 2011). A natural tension will always exist between school districts who must manage limited resources and parents who want as many of those resources as possible applied to their children’s learning. The lack of health insurance coverage for ABA coverage for most autistic children will EDUCATION FOR AUTISTIC CHILDREN 46 likely translate into increased litigation as families press for schools to cover the majority of their children’s treatment. Parents have generally prevailed when there is a procedural violation of IDEA; however, courts have also made it clear that school districts are the experts in educating special needs children and are loath to question the adequacy and appropriateness of individual IEPs. Unless there is a means for families and school systems to agree on what constitutes a FAPE, litigation rates will continue to climb. The determination of evidence-based programming for autism that can be agreed upon by schools and parents would be a good start to reducing conflict between families and the schools. Evidence-Based Practices for Education of Autistic Students Evidence-based practices are instructional techniques that meet prescribed criteria related to the research design, quality, quantity, and effect size of supporting research, which can bridge the research-to-practice gap and improve student outcomes. Once thought to be untreatable, effective therapies have emerged to treat autism. There is a body of research that has examined early and intensive interventions and demonstrated principles of ABA can dramatically improve the outcomes for autistic children. In the 1970s, empirically based research showed students with autism could make developmental gains under certain condition using techniques specific to the disability (Joy, 2008). Each method has similar attributes and features active teaching, structured classrooms, high teacher-to-student ratios accompanied by individualized teaching plans to address student strengths and weaknesses as a demonstrated effective means promote learning (Fombonne, 2003). The following section will detail the evolution of interventions for treating autism; although their methodologies differ somewhat, most would be described under the umbrella term, “ABA”. Parents sometimes have preferences for one methodology over another, depending on what they feel works best for their child. EDUCATION FOR AUTISTIC CHILDREN 47 Evidence-Based Practices in Treating Autism and Outcomes Applied Behavior Analysis (ABA) is based on the work of Dr. Burrhus Skinner, an American behaviorist who described the process of learning through the consequences of behavior, which he called, “Operant Conditioning” through which an association can be made between a behavior and a consequence of that behavior (Skinner, 1957). Skinner’s first major exposition, The Behavior of Organisms (1938) was the impetus for the development of behavior analysis. Through laboratory observation of rats, Skinner observed that certain environmental events that immediately followed events had a clear influence on future behaviors. This led to the development of a Stimulus – Response – Stimulus model of behavior that accounted for behaviors that did not have apparent precursor causes; he called these behaviors “operant”, in that they are influenced by consequences of past behaviors by the organism. Skinner outline basic principles of behavior, which comprise the science of behavior analysis; as implemented to teach or shape behaviors, it is called “Applied Behavior Analysis,” or ABA, and is considered to be the standard of care for autistic individuals. ABA is used to teach socially significant behaviors. These include communication (language, gesturing, facial expression), social skills, academics, life skills (toileting, dressing, eating, self-care, cleaning and vocational skills), and gross and fine motor skills. ABA reinforces appropriate behaviors and responses, resulting in an increase in desired behaviors and a reduction in undesirable behaviors, because children are more likely to continue behaviors that are rewarded. ABA is evidence-based and relies on data collection and analysis to show learning or regression. What follows below is a history of the development of different ABA approaches. EDUCATION FOR AUTISTIC CHILDREN 48 An intervention called the Treatment and Education of Autistic and related Communication Handicapped Children (TEACCH) began as a pilot study in the mid-1960s at the University of North Carolina. TEACCH used visual supports and structured environments to create family-centered programs tailored to the individual. In 1971, its developers conducted a study comparing the effects of structure versus relative unstructured on autistic students; the findings indicated autistic students tended to react more favorably to a structured environment (Schopler, Brehm, Kinsbourne & Reichler, 1971). TEACCH is an intervention model that seeks to create an environment and instructional processes centered on autism’s core attributes (Mesibov & Shea, 2010). The theoretical and conceptual foundations of TEACCH are based on cognitive-social learning theory, developmental theory, neuropsychological theories of executive function, and ABA (Long, 2011), and structured learning to play to the child’s strengths. Research has shown that autistic students who receive structured teaching show a decrease in negative behaviors and an increase in independent skills, imitation skills, and cognitive skills (Van Bourgondien, Reichle & Schopler, 2003). Learning Experiences an Alternative Program (LEAP) was started in 1982 as a federally funded model demonstration program that targeted both typically developing and autistic children between the ages of 3 and 5 years (Greshem et al, 1999). At the time, it was one of a very few inclusive programs available for autistic children. LEAP is an intervention model that utilizes the natural classroom setting, but allows for individualized instruction for students through incorporating learning through general activities and routines. LEAP demonstrated all children can benefit from an integrated environment, and because of the difficulties the autistic child has in generalizing learning across environments, the benefits of interventions to the autistic child are maximized when conducted across home, school and community settings. Peer EDUCATION FOR AUTISTIC CHILDREN 49 learning was also shown to be beneficial to the autistic child, as appropriate behaviors, language skills and social skills were modeled by typically developing peers. In 1987, a seminal work by Ivar Lovaas of UCLA demonstrated intensive therapy encompassing most waking hours for autistic children can build complex behaviors such as language, increase IQ, and can reduce self-injurious or self-stimulatory behaviors (Lovaas, 1987). In his study, 47% of the experimental group receiving 40 hours of ABA each week for several years achieved normal intellectual and educational functioning such that they were mainstreamed by first grade, compared with 2% of the control group subjects (Lovaas, 1987). This study led the way for ABA to be considered an effective, evidence-based therapy. For years children with autism were thought to suffer from significant mental retardation, but it is now known that at least 50% of those afflicted have IQs that are at least in the normal range (Bauman, 2010). This misperception that children with autism were so cognitively impaired as to prevent them from learning likely contributed to the lack of meaningful programs to educate the children. Lovaas’ study was the first to demonstrate autistic children can learn if taught in a way that is meaningful to them. In a study conducted by Smith, Groen and Wynn, young children with pervasive development disorder or classical autism were randomly assigned to either an intensive, individual treatment or parent training (Smith, Groen, & Wynn, 2000). The intensive treatment group averaged 24.52 hours per week for one year; the parent-training group received three to nine months of parent training. Both groups appeared similar upon intake, but at follow-up the intensive treatment group had made more significant gains on measures of intelligence, visual- spatial skills, language and academics, but not adaptive functioning or behavior problems. In EDUCATION FOR AUTISTIC CHILDREN 50 both groups children with pervasive development disorder made more gains than the children with classical autism (Smith, Groen, & Wynn, 2000). Aldred (2004) conducted a Randomized Controlled Trial (RCT) using randomly assigned comparison groups to study psychosocial treatments in autistic children (Aldred, Green & Adams, 2004). A primary goal of this study was to demonstrate RCTs are feasible, even with the heterogeneity of presentation of autism. Twenty-eight children were randomized, but baselined by severity of their condition; parents were trained in pragmatic language for six months and asked to spend 30 minutes daily implementing the techniques they learned (Aldred, Green & Adams, 2004). The group receiving the intervention showed improvements in autism severity scores using the Autism Diagnostic Observation Schedule (ADOS) (Aldred, Green, & Adams, 2004), the instrument considered to be a primary resource for diagnosing autism. Gillberg and Steffenburg (1987) conducted one of the first contemporary adult-outcome studies, and found a generally poor prognosis for autistic individuals diagnosed as children. Only one of 23 participants was living independently. Similar results were found in a population-based follow-up study conducted by Billstedt, Gillberg, and Gillberg (2005) of 120 individuals with autism. Billstedt (2005) found the adult outcome was poor in 78% of the cases; only four of the participants were considered to lead independent lives in adulthood and these four lived in relative isolation. Childhood IQ-level and some degree of communication by age six were positively correlated with better adult outcome (Billstedt, Gillberg & Gillberg, 2005), and can be affected by early and intensive intervention. The study concluded children with autism diagnoses in the 1960s, 1970s, and 1980s may have had a poorer psychosocial outcome than previously believed, implicating the need for early and intensive behavioral interventions. EDUCATION FOR AUTISTIC CHILDREN 51 Replicating the parameters of the early intensive behavioral treatment developed at UCLA, 24 children with autism were randomly assigned to a clinic-directed group or a parent- directed group that received intensive hours but less supervision in a study by Sallows and Graupner completed in 2005. This study was conducted over four years; treatment included cognitive, language, social and academic interventions and results were similar for both groups. Outcome was best predicted by severity of symptoms pre-treatment; results were consistent with those reported by Lovaas (Sallows & Graupner, 2005; Lovaas, 1987). Replication in a non-university, community-based setting of Lovaas’ UCLA model study was demonstrated by Cohen, et al through a RCT where an Early Intervention group received 35 – 40 hours of training per week for three years following the Lovaas manual (Cohen, Amerine- Dickens, & Smith, 2006). Significant improvement in IQ scores for the participants receiving the therapy was reported. This study suggested the UCLA/Lovaas Model or early intensive behavioral treatment can be replicated across settings. The Early Start Denver Model (ESDM) is a comprehensive behavioral early intervention appropriate for children ages 12 to 48 months. It is conducted in a natural setting, follows a normal early childhood development sequence and focuses on shared engagement and joint activities. Deep parental involvement is a part of this approach. ESDM has been shown to be effective in several studies. A 2008 study by Vismara and Rogers implemented the ESDM intervention with an infant identified at 9 months of age with a behavioral profile consistent with autism. Results demonstrated that the parent acquired multiple teaching tactics that were associated with improvement in the infant’s social communication behaviors. Dawson et al. (2010) conducted a RCT of 48 children to evaluate the efficacy of the ESDM in toddlers with autism. Results showed that children who received ESDM therapy for EDUCATION FOR AUTISTIC CHILDREN 52 20 hours per week over a two-year period showed “greater improvement in cognitive and language abilities and adaptive behavior and fewer autism symptoms than did children referred for interventions commonly available in their communities” (Dawson, et al, p. e17). A number of studies have further validated that early interventions using ABA principles and techniques can mitigate or even eliminate autism symptoms and problem behaviors. Randomized Control Trials have demonstrated beneficial effects in short term or longer-term studies, but it is still early in the process of determining which interventions are most effective in treating early autism, which variables produce the best outcomes following intervention, and the degree to which short-term and long-term improvements can be expected (Rogers & Vismara, 2008). Although Lovaas first introduced the idea of a “best outcome” or “recovery” from autism, research has continued to demonstrate that through intensive and appropriate treatment, children with autism can recover to such a point as to lose their diagnosis. It had been widely believed that if a child lost an autism diagnosis, the child did not actually have autism. However, Helt et al. (2008) reviewed evidence that between 3% and 25% of children lose their autism diagnosis and function in the normal range of cognitive, adaptive and social skills. Predictors of recovery were found to be relatively high intelligence, receptive language, verbal, and motor imitation and motor development, but not overall symptom severity (Helt, et al, 2008). A recently published study by Fein et al. (2013) builds upon those findings. In this study, 34 participants who were verified to have had a diagnosis of autism with an optimal outcome, 44 high-functioning individuals with a current autism diagnosis, and 34 typically developing peers were tested. The study concluded that a possible optimal outcome in individuals with autism is substantiated. EDUCATION FOR AUTISTIC CHILDREN 53 Students with autism require specialized interventions that address comprehensive skill development, including social and communication skills, task engagement and work skills, as well as adaptive, cognitive, and motor skills (NRC, 2001). The evolution of interventions specifically designed for autism have empirically demonstrated that with proper treatment, children with autism can and do improve to such a point that can lead independent lives or even lose their diagnosis altogether. These evidence-based methods favorably argue that appropriate programming at high intensity can remediate the disability significantly. However, educators must be trained in evidence-based programming and how to properly apply it in the classroom. Parental Satisfaction with Autism Services in Public Schools A review of the literature in this area identified areas of dissatisfaction for parents of autistic children toward the public school system. I specifically searched for parent satisfaction with autism services and because of the rapidly increasing understanding of the condition, focused on articles written since the year 2000. Parental satisfaction research will inform my methodology and will enable me to focus my interview questions to elicit responses in my area of interest. The research found yielded similar themes. In reviewing this literature, I was interested in determining if there were common areas of satisfaction and dissatisfaction among parents. Yell (2000) found areas of dissatisfaction to include ambiguity in defining FAPE, minimization of parental input, parental trust, professional training, collaboration, frustration, stress and student support (Yell, 2000). This study was done through a review of 45 published due process hearings and court cases related to autism where parents challenged the appropriateness of their child’s education. In these cases parental dissatisfaction stemmed from disagreements over programming, and intensity levels of behavior modification services. EDUCATION FOR AUTISTIC CHILDREN 54 Graham (2003) found parents express satisfaction with their child’s FAPE if they feel the schools are providing good communication, the staff is well-educated in autism, and there are beneficial academic programs offered to their children. Parental involvement in the special education process and an open communication process at all levels were considered to be key factors in developing and maintaining parental satisfaction. In a 2005 study, Renty and Roeyers (2005) identified and described factors associated with the level of parental satisfaction with formal support and education for Flemish children with autism spectrum disorders in Flanders. Dissatisfied parents were identified and interviewed. The study concluded that parents were displeased with the support provided by the schools, particularly with mainstreaming children. Predictors of overall satisfaction with their child’s education were parental involvement in formal support, knowledge of service provisions and time between first consultation and final diagnosis; specifically, parents had difficulties with the diagnostic process and accessibility of autism-specific provision of services. Parents of autistic children, particularly mothers, are often heavily involved with their child’s education and are consistently engaged in four roles: a) negotiator—an evolving skill to gain services for their child under the IEP; b) monitor—checking quality and content of their child’s educational programming; c) supporter—encouraging, assisting or acting as an advocate for teachers; and d) advocate—participating in supplemental activities related to autism beyond those directly affecting one’s own child (Stoner & Angell, 2006). In a study of eight parents of four autistic children, Stoner (2006) found the monitoring parents did of their child’s education was mediated by the level of trust in the child’s educators and noted poor communication between parents and educators often led to conflict. Also noted were the feelings of parents that the educational system perceives them to be adversarial, demanding and hostile. EDUCATION FOR AUTISTIC CHILDREN 55 In working with autistic students, a 2012 study found parents’ feelings that the school system finds them difficult are warranted (Shuran & Roblyer, 2012). A special education director stated during an interview, “Parents are so demanding…they feel there is a cure and want every service imaginable to try and work towards that cure” (Shuran & Roblyer, p. 62). Hill (2009) studied the experiences of 25 mothers of students with autism from kindergarten through high school up to age 22 as they encounter the public school system. Findings were that mothers of autism value a trained, knowledgeable, communicative and empathetic staff on their child’s education team. Mothers of younger children (kindergarten to grade two) wanted high-levels of supervision and attention, and inclusion with their child’s non- disabled peers. Although overall feelings were positive among mothers of pre-high school children, mothers of high school-age children were more dissatisfied, believing schools to be apathetic toward their children’s education. Starr and Foy (2012) surveyed parents of 144 children with autism spectrum disorders regarding their perceptions of and satisfaction with their child’s education. Responses yielded themes concerning the ability of school personnel to manage behavior, teacher education and understanding of autism, and effective communication and collaboration between parents and school. Parents expressed frustration with low expectations for their children and “busy work” rather than challenging the child academically. This study concluded that parents’ views should be taken into consideration because parents are often more aware of evidence-based interventions, such as ABA, than educators are because of the self-education (Starr & Foy, 2012) and experience they have in raising an autistic child. In the studies discussed above, which focused on parental satisfaction with their child’s education, parents felt the need for specialized teacher training and knowledge of autism is most EDUCATION FOR AUTISTIC CHILDREN 56 necessary. Open communication and inclusion of parents in their child’s education was also a key factor in parents’ satisfaction with their child’s education. Zablotsky, Boswell and Smith (2012) looked at school involvement as a function of parental satisfaction and cite it as being previously unstudied. They found parents of children with autism were more involved than parents of children without the disorder, i.e., more likely to attend parent-teacher conferences, meet with school guidance counselors, and help with homework. A significant positive correlation was found between parental school involvement and parental school satisfaction (Zablotsky, Boswell & Smith, 2012). However, in agreement with the findings discussed above, parents of children with autism were also found to be more dissatisfied with the level of communication provided by the school. Communication, involvement of parents in their child’s education, and educator training and knowledge of autism were key themes that emerged from the literature. These themes will inform the lines of my inquiry. Social Validity Theory Social validity is the social acceptability of the goals, procedures, and outcomes of interventions (Callahan, Henson & Cowan, 2008) and can be thought of as consumer satisfaction by those who receive, implement and oversee these interventions. For the purposes of this study, children and families are the recipients; teachers or those providing instruction are the implementers; and administrators are the overseers. Kazdin asserts social validity can be assessed through subjective evaluation (Kazdin, 1977). This method entails asking participants what they think, perceive or feel about a particular intervention or program, and can be done using questionnaires, interviews, focus groups or a combination of these methods. This study EDUCATION FOR AUTISTIC CHILDREN 57 will investigate parents’ views of their child’s FAPE through the lens of social validity theory through interviews. Wolf (1978) established the concept of social validity as being comprised of three components: (a) the significance of the goals; (b) the appropriateness of the procedures; and (c) the importance of the effects, i.e., are consumers satisfied with the results? Social validity was highly correlated with whether particular strategies are used effectively across treatment settings or whether they are implemented at all (Greshem, et al, 2004). The significance of the goals can be established in how parents value certain skills or behaviors, i.e., some skills may be more important to parents than to the educator, who ultimately is trying to implement an educational program, albeit with behavioral interventions to enable learning. Wolf suggested that consumers might not use an otherwise effective intervention because it lacks social validity or is not valued by consumers (Wolf, 1978). Similarly, Kern and Manz (2004) found that even interventions with high levels of empirical support for effectiveness may be “destined for failure—particularly by way of rejection—if one or another dimension of the program is not acceptable to consumers” (Kern & Manz, 2004; p. 54). There is almost a complete absence of social validity research in the area of autism, especially with respect to studies addressing multiple intervention components associated with successful programs for school-aged children (Callahan et al, 2008). This could be because it was not until recently there has been research demonstrating there are empirically based techniques that can result in dramatic improvement. Because most children with autism spend a significant portion of their available intervention time in public school programs, there appears to be a need for additional research in this area. EDUCATION FOR AUTISTIC CHILDREN 58 The relative lack of research in social validity theory as it pertains to the implementation of evidence-based practices is a likely contributor to research-to-practice shortfalls (Callahan, 2008; Kern & Manz, 2004). Callahan found that the results of a social validation survey completed by parents, teachers and administrators indicates robust consistent support for program components falling within five functional areas: (a) individualized programming; (b) data collection; (c) the use of empirically-based strategies; (d) active collaboration; and (e) a focus on long-term outcomes (Callahan, 2008; p. 678). Social validity measurement has played a key role in evidence-based practices (Strain, Barton & Dunlap, 2012). Attention to social validity can: (a) influence the design of service delivery systems to provide assistance where it is most needed; (b) provide input for critical decisions regarding scaling back the support level to consumers; (c) change one’s perceptions regarding the nature of an intervention approach and the target of that intervention; (d) result in willingness to implement innovative and radically different strategies to alter problem behaviors and teach new skills; (e) reveal important and unexpected intervention effects; and (f) guide future research (Strain, 2012). Failing to identify and socially validate core practices for use in autism programming can have serious and sweeping consequences. A lack of wide knowledge of socially valid autism interventions could result in educators or providers will not be aware of or might ignore effective practices or they may continue to use unproven or ineffective interventions (Callahan, 2008). The existing lack of agreement among parents and schools as to what constitutes appropriate autism programming could continue to impede successful collaboration. Strain (2012) suggests that there is a positive correlation between practitioners “liking” an intervention and implementing it with fidelity. EDUCATION FOR AUTISTIC CHILDREN 59 Summary Because this study will examine the views of parents in provision of a FAPE, this chapter explored the evolution of special education law as it pertains to autism, and the litigation that is continuing to shape how a FAPE is provided to autistic students. The IEP is the cornerstone of IDEA, and its adequacy or schools’ inability to follow the IEP in providing a FAPE are frequently the source of Due Process hearings and litigation. However, research shows parents often do not feel like equal partners in the IEP process, contributing to an adversarial relationship between schools and parents. Although autism was once thought to be untreatable and the children profoundly cognitively impaired, recent research shows this not to be the case. Research is evolving to yield evidence-based methodologies for treating autistic children to produce best outcomes. This study elicited which evidence-based services for treating autism are used in Mana District to comprise a FAPE for autistic children, and examined the opinions of parents and therapists through the social validity lens in determining satisfaction with the FAPE provided autistic children in Hawaii. EDUCATION FOR AUTISTIC CHILDREN 60 CHAPTER THREE: RESEARCH METHODOLOGY The purpose of my study was to collect and document the perspectives of parents of autistic children in Mana District, Oahu, Hawaii regarding their child’s public education to determine what factors they find most important in the provision of a FAPE. Mana is a pseudonym chosen to protect anonymity of the District, its schools, and participants. A non- probabilistic, purposive sampling approach was used. I chose to interview parents of autistic children who are currently enrolled in Mana District who would be likely candidates to receive a wide array of services. Because the number of different services is generally higher with younger children and believing this could affect parental perceptions, I interviewed parents of children aged 5 – 12. I also interviewed four private service providers who treat children with autism on Oahu to see how or if their responses would vary from those of parents regarding the quality and intensity of services. The following research question guided my study: What are the key factors parents of autistic students in Mana District, Oahu, Hawaii expect in the provision of a FAPE for their children? This chapter reviews the study’s research design, site and participant selection, instrumentation, and procedures for data collection and analysis. Research Design The study was grounded in qualitative research in the form of a case study of autism service provision in Mana District, which allowed me to see what services were provided to different children of differing abilities and autism severity. This approach afforded opportunities to develop a richer understanding of participant experiences through descriptions and explanations (Stoner & Angell, 2006). Interviewing multiple participants for this case study offered assurance that events that occurred are not idiosyncratic (Stake, 2000). EDUCATION FOR AUTISTIC CHILDREN 61 Yin (2009) defines a case study as, “an empirical inquiry that investigates a contemporary phenomenon in depth and within its real-life context, especially when the boundaries between phenomenon and context are not clearly evident” (Yin, 2009; p. 18). Creswell (2007) defines case study as qualitative research or a particular topic of study, as well as a product of inquiry in which the examiner explores a bounded system or systems (a case or cases) over time through a comprehensive, in-depth data collection, involving multiple sources of information. These sources may include interviews, observations, artifacts, or other documentation. For the purposes of this study, various data sources were used to include reporting from the Hawaii Department of Education, special education reports, IEPs where available, interview field notes, and media materials created by Hawaii’s Mana District. Stake (1995) classifies cases into three categories: (1) instrumental; (2) collective or multiple case study; and (3) intrinsic. In the instrumental case study, the researcher chooses to examine one problem or issue, and then selects an illustrative bounded case. The case is secondary to the exploration of a specific issue and seeks to build theory or describe generalizations (Stake, 1995). In collective or multiple case studies, the researcher selects multiple cases representative of one issue to exemplify differing perspectives of the topic. The intrinsic case study is the study of a circumstance (individual person, specific group, occupation, organization) where the case itself is the primary focus of the study because it holds inherent or unusual interest to the researcher (Stake, 1995). The inquiry is guided by the desire to know more about that particular case, rather than building theory or inferring how this case is representative of other cases. As a rule, qualitative researchers are reluctant to generalize from one case to another since the context of each case differs. A case study represents an individual case and is not representative of various populations. EDUCATION FOR AUTISTIC CHILDREN 62 A qualitative case study methodology is appropriate in this instance and I chose the case study format for two reasons: first, because it is a powerful way to examine an issue and when meticulously done can have a significant impact (Gilham, 2000), and secondly, because it allows the researcher to gain unique insight and understanding about complex phenomena within their contexts (Baxter & Jack, 2008). It can become a valuable method for developing theory, evaluating programs and developing interventions when properly applied (Baxter & Jack, 2008) and is particularly suitable for answering how, who and why questions, and for investigating events that are occurring contemporarily (Farquhar, 2012). Merriam (2009) describes the value of qualitative research as providing a richness to the data collected, allowing for answers to the how, who and why questions. Site Selection and Participant Criteria This study used purposive sampling in recruitment of participants. Through a community autism group, I solicited the participation of parents of autistic children in Mana District who have children that have attended Mana District schools in K6 for at least one year. Eight parents responded, but one withdrew. All children had autism diagnoses and were receiving some degree of special education services. I chose to focus on Mana District because it is considered to be the model district in Hawaii and has piloted many new programs. I assured confidentiality and anonymity to the participants of the study; parents were apprehensive that they could be identified if too many details of their child’s situation were disclosed. Some were concerned there could be retribution regarding their children’s services if they were identified. Therefore, I have written the contents of the interviews in such a way as to remove gender from either the interview participant or their child. I decided not to group data by child to further assure there can be no identification of the children or the interview participants. EDUCATION FOR AUTISTIC CHILDREN 63 I also interviewed four therapists who provide services to children on Oahu who were solicited through a professional organization for ABA providers. Three of the four have worked extensively with Mana District personnel and students; one has worked only minimally with Mana students. I originally planned to interview DOE personnel; however, time constraints did not allow me to pursue this avenue. Instrumentation To address the research question regarding the factors that parents find important in the provision of a FAPE, I used my conceptual framework to develop questions that would elicit the types of responses I was seeking within a Social Validity framework. Although parents had children with differing capabilities and disabilities, common themes emerged and theoretical saturation was reached. The instruments for this study were designed by me and consisted of questions that would both directly and indirectly solicit the types of responses that would address my research question. Therapists were asked questions that mirrored those of parents to provide some balance since I did not interview DOE personnel. The instruments can be found in Appendix A and Appendix B. Data Collection The primary means of data collection was done through interviews of parents of children with autism and therapists in private practice or contracted by DOE who treat current or former DOE students on Oahu. I also accessed a number of reports on special education in Hawaii and in Mana District, in particular. Interviews ranged from 45 minutes to about two hours; some EDUCATION FOR AUTISTIC CHILDREN 64 respondents were very detailed in their responses and gave descriptive examples that supported their replies. They were conducted in neutral settings—coffee shops, restaurants and food courts. I completed the Institutional Review Board (IRB) process at USC prior to soliciting parents for participation in my study. I solicited participants through an autism community group that has hundreds of members, both parents of children with autism; and therapists that treat children and young adults with autism were solicited through a professional organization for ABA therapists in Hawaii. Data Analysis The instrumentation used for this study consisted of semi-structured interviews, which I conducted with parents of autistic children and ABA therapists. Interviews consisted of broad, open-ended questions which were designed to investigate parental perspectives regarding their child’s FAPE. Therapist interviews provided another vector to assess parental responses. Interviews were in some cases audiotaped and were all transcribed and analyzed, and continued until “theoretical saturation” occurred (Strauss & Corbin, p. 292) and no new data emerged. I captured responses and coded them within a social validity framework of Significance of Goals; Acceptability of Procedures; and Importance of Effects to draw conclusions. Informed Consent Informed consent was obtained and the USC IRB processes were followed. Confidentiality was assured to all participants, parents and providers alike. For that reason, as stated above, I have removed gender of parents, children and therapists involved and the names of schools children attend or the organizations therapists who provided service belong to are not mentioned. A pseudonym is used for the District in question on Oahu to further assure anonymity. EDUCATION FOR AUTISTIC CHILDREN 65 Interviews The primary instrumentation used for this study was in the form of semi-structured interviews conducted by me with parents of autistic children aged 5 to 12 years, and therapists who serve autistic students in Mana District as the principal form of data collection. Interviews consisted of broad, open-ended questions designed to investigate parental perspectives involving the services and programs offered in provisioning the children’s FAPE. Interviews were in some cases audiotaped, and were all transcribed and analyzed and continued until “theoretical saturation” occurred (Strauss & Corbin, p. 292) and no new data emerged. I captured responses and coded them in a social validity framework of Significance of Goals; Acceptability of Procedures; and Importance of Effects to draw conclusions. Parents of autistic students attending elementary schools in Mana District were interviewed for their perspective on what constitutes an appropriate education for their children, i.e., what would satisfy them that their children are receiving an education appropriate to their needs. Social validity theory tells us consumers of interventions and programs should approve of the goals of the intervention, should agree with the appropriateness of the interventions, as well as the procedures used within classrooms, homes and other environments; therefore the effects of the interventions are important to ascertain. The instrument containing the questions asked of parents to understand their child’s situation and what factors were most important to parents in a FAPE are contained in Appendix A. I also interviewed private therapists to balance the opinions of parents with those of professionals. I formulated questions to mirror those asked of the parents. I asked the containing the questions I asked of therapists can be found in Appendix B. EDUCATION FOR AUTISTIC CHILDREN 66 Both parents and therapists were also asked to provide additional thoughts or suggestions for improvement for autism service provision in Mana District. The unstructured format of the question allowed for participants to include examples of situations they felt were less than ideal. Validity and Reliability The concept of validity in qualitative research is defined as whether the means of measurement are accurate and are measuring what they are intended to measure (Golafshani, 2003). Because qualitative research is more inductive than quantitative research and focuses more on understanding specifics rather than generalization, there is less ability to affect prior elimination of validity threats. Researcher effects and bias are recognized factors in qualitative research and the goal is not to eliminate this influence, but rather to understand its presence and use it effectively (Maxwell, 2012). Although I was the principal researcher for this study, I am also the parent of a child with severe autism. My personal experiences allowed me to craft questions that would elicit responses to inform this study, and no doubt played a role in the interpretations I assigned to participant responses. External validity, also referred to as generalizability or transferability, is not a goal for qualitative research. However, although specific events that occurred are unique to participants, similarities can be drawn across the phenomena. For example, research tells us that nearly half of all individuals with autism will elope or wander from a safe environment; individual stories of children eloping from their classrooms in Mana District, Hawaii do contribute to the development of a body of knowledge of this subject. To increase the study’s external validity, I drew upon themes I extracted from the literature review in Chapter 2. Triangulation of data is an important theoretical validity check as there are now sources who will have a different situational perspective, possibly yielding differing thematic responses. EDUCATION FOR AUTISTIC CHILDREN 67 Interviewing therapists of autistic students in Mana District allowed me to triangulate data, thereby increasing validity. Reliability seeks to assure a researcher that the results are replicable by different researchers if the study is conducted using the same methods, procedures and instruments. Asking parents and therapists the same or similar questions enhanced reliability. I maintained consistency by asking the same questions of each parent and the same questions of each therapist participant. The questions asked by both groups were similar and meant to elicit certain types of responses. Summary This study sought to understand factors that provide satisfaction or cause dissatisfaction in the provisioning of their child’s FAPE. Before commencing data collection, the quantity and quality of services were believed to be the strongest drivers in parental satisfaction with the public school system. I used a purposive sample of seven parents and four therapists to develop an understanding of parental and student needs. The Conceptual Framework presented in Chapter 1 guided the course of this study: I utilized the body of research to determine what programs and services have been found to be successful in educating autistic children, determined what the legal requirements are for provisioning these services, and evaluated research of parental satisfaction with the special education process, and in particular, factors that produced satisfaction or dissatisfaction in parents of autistic students in provisioning a FAPE. I applied Social Validity theory to evaluate parental and therapists’ responses. Data collection began after passing the Qualifying Exam and successful completion of the IRB. I solicited the participation of parents through an e-mail announcement that was sent to hundreds of parents on Oahu. Only parents with a child with an ASD diagnosis aged 5 to 12 EDUCATION FOR AUTISTIC CHILDREN 68 years who was attending school in Mana District for at least one year were eligible. I received eight responses to this solicitation for participants; seven of the eight agreed to meet for an interview. The eighth declined after initially agreeing to participate, citing concerns they could be identified. I sought therapist participants through a behavior analyst organization in Hawaii. Four individuals responded and all were interviewed. EDUCATION FOR AUTISTIC CHILDREN 69 CHAPTER FOUR: RESULTS Overview of Study The purpose of this qualitative study was to understand the factors that are important to parents in the provision of their autistic child’s public education, i.e., what elements result in parental satisfaction or dissatisfaction with the special education services their child is receiving? Mana District is a pseudonym chosen to protect the identity of the District, its schools and study participants. The findings of the study are discussed in this chapter. The research question that guided my inquiry was the following: What are the key factors parents of autistic students in Mana District, Oahu, Hawaii expect in the provision of a FAPE for their children? Seven parents of autistic children were interviewed and asked the same questions. Four therapists who provide services to autistic children on Oahu were also interviewed and asked questions that mirrored those asked of the parents. I reviewed all transcriptions of the interviews, synopsized the parental and therapist responses, and then identified clusters of concepts. After identifying themes, I viewed them through a social validity framework: significance of goals; appropriateness of procedures (quality, quantity/intensity of services; and importance of effects, i.e., parental satisfaction with results. I anticipated hearing more negatives than positives, and this was the case even among highly satisfied parents. Research tells us that organisms have evolved to handle the most important events and most frequently occurring events in their lives (Rozin & Roysman, 2001). There is a negativity bias that occurs, such that frequency of a negative event and importance are negatively correlated; i.e., an individual is more likely to recall a negative event than a positive one. There is thought to be more physiological arousal associated with negative events (Taylor, 1991). Rozin (2001) also postulates that concomitant with negativity bias is the domain of EDUCATION FOR AUTISTIC CHILDREN 70 contagion. In terms of DOE reputation and treatment of autistic students, parents who complain to others could “contaminate” the others’ perceptions of their child’s FAPE. I found this was the case for several parents who said they were told by others “not to trust the DOE.” Overall, the services the schools provide are those listed under the requirements of IDEA Part B for a FAPE, such as Speech, Occupational and Physical Therapies, with the addition of ABA for some of the children. A determination of sufficiency is subjective and individualized by child, and was the focus of the interviews. Overview of Participants Of the parents I interviewed, only two were distinctly dissatisfied with their child’s education. Those who were dissatisfied had children who were higher functioning; one with an Asperger’s Syndrome diagnosis, the other a higher-functioning child with classical autism with moderate speech ability. In both cases the schools involved determined these children no longer required special services beyond general special education and Speech; OT, Physical Therapy, a 1-1 aide and ABA were discontinued, inappropriately in the opinion of the parents. Both parents stated the schools did not accept their input regarding their children’s needs. Two parents interviewed had filed unsuccessful Due Process cases in the past against Mana District; in evidence of negativity bias, both said they were repeatedly told by other parents that the DOE could not be trusted to provide an appropriate education and services for their children and were approached by a lawyer soliciting clients. Both said they regretted they had taken this approach and find it more productive to work with the schools their children attend and are now generally satisfied with the services and programs their children are receiving. EDUCATION FOR AUTISTIC CHILDREN 71 Although only two parents indicated up front they were unhappy with their child’s FAPE, when asked specifically about strengths and weaknesses of the school in their child’s education, more weaknesses than strengths were mentioned, even for parents who indicated they were generally pleased with the services and providers in Mana District; again, this was evidence of negativity bias. I interviewed a total of four ABA therapists. Two of the therapists interviewed work or have worked extensively with Mana District; the third therapist has had and currently has clients from Mana District, but works equally with clients from other districts; the fourth therapist has had only limited experience with Mana District but has worked frequently with other Oahu school districts. All therapists augment services provided by DOE, both in and out of school setting. Overview of Interviews Interviews were conducted in February and March of 2014. The instruments were designed to draw out information that would enable a good understanding of how a FAPE is provided to autistic students in Mana schools. A discussion of the results follows below. The first four questions were designed to elicit information regarding the children’s functional abilities and severity of their autism. I predicted that parents of students with more severe disability due to autism would be more likely to be dissatisfied overall. This was largely not the case, and found parents of higher-functioning students tended to be more dissatisfied because their children had lost services previously provided. These parents felt the schools did not appreciate the severity of their social impairments and how this would affect future employment. EDUCATION FOR AUTISTIC CHILDREN 72 I asked parents at what age their children became eligible for services through the DOE to understand at what age the children were diagnosed with autism and ascertain if there were delays in DOE assuming service provision from the Department of Health. Six of the children were receiving services through IDEA Part C via the Department of Health; five of these children immediately received services through DOE when they aged out at 3 years of age; one parent had to fight for eligibility after the child reached age 3, so the child’s services were delayed by six months. The other child attended private schools until age 8; this child has Asperger’s Syndrome and is high-functioning academically. The fact that most children transitioned seamlessly from IDEA Part C (Early Intervention) into the DOE system indicates most Mana schools are receptive to adding autistic children to their enrollment and are not trying to deny services by questioning diagnoses. Three parents have children who have attended schools out of Mana District: one child had attended public school for one year in another state; one had attended school in another district; and the other was the child who had attended private school. The parent of the child who had attended school in a different state said her child received more services from more qualified providers at the other location; the parent whose child was previously in another Oahu district said Mana was far superior; and the third parent said the private school was comparable to the Mana public school, most likely because the child does not need a lot of services. Parents were then asked to describe strengths and weaknesses of the schools in providing a FAPE; to describe their child’s best and worst educational moments; what they would consider an ideal FAPE to be; and finally how schools could better serve parents and students. These questions were designed to draw out details of how the schools succeed or fail in providing an education to students with autism. EDUCATION FOR AUTISTIC CHILDREN 73 Of the seven parents interviewed, two were dissatisfied; two were highly satisfied and three were unsure about whether or not their child’s current educational situation constituted a FAPE. Two parents interviewed had previously filed unsuccessful Due Process complaints; of these two parents, one is satisfied with her child’s FAPE; the other is more ambivalent, not certain that her child is receiving all the needed services at a meaningful intensity. Both parents said they regret entering Due Process and expressed willingness to work with the schools and District in creating good programs for their children. Surprisingly, even the parents who expressed a high degree of satisfaction with their child’s FAPE listed more weaknesses than strengths of the children’s schools. I interviewed four Oahu ABA therapists to determine if parental perceptions of Mana District’s provision of a FAPE for autistic children were accurate. The questions they were asked mirrored those of the parents’. ABA Therapists were generally in agreement that provider quality on Oahu is lacking, but also agreed that Mana District is better than other districts in public school education for autistic students, basing their opinions on classroom observation, interactions with Mana DOE teachers and service providers, or working directly in a school or schools in Mana District. Upon analyzing the data, clear themes emerged from parents. These are discussed in detail in the section below through the Social Validity lens. As anticipated, quantity and quality of services were key factors in a parent’s satisfaction with their child’s FAPE. However, parents agreed that quantity in and of itself was not as important as the quality of the services and providers, and appropriate goals that addressed critical functional impairments were considered essential. Parents were concerned that the providers treating their children were sincere and honest and considered this a factor in provider quality. EDUCATION FOR AUTISTIC CHILDREN 74 Social Validity Themes: Findings and Discussion Significance of Goals To be socially valid, Wolf (1978) wrote the goals of the treatment must by significant, indicating to what extent a child’s behavioral interventions are important and relevant. A child’s IEP contains the goals the child is reasonably expected to reach annually and is based on the child’s present levels of academic and functional performance (Wright & Wright, 2013). Functional goals are non-academic and refer to routine, everyday activities, such as toileting, self-care, or in general, how to function in the world. For older children, crossing the street might be an example of a functional goal; for a younger child, learning routines associated with getting dressed and ready for school could exemplify a functional goal. All of the children had functional goals written into their IEPs. Parents’ biggest concerns were social and vocational goals, even though the children were in elementary school. Transition (in terms of aging out of DOE services) was already on the minds of these parents and they were concerned with their children’s ability to use public transportation or how to pay for an item in a store. Parents expressed displeasure with their child’s goals; they felt the schools’ expectations were too low, and in some cases not appropriate. For example, one parent thought the goals to improve the child’s physical coordination were not appropriate and cited, “falling down no more than three times per week” as an inappropriate functional goal that was not meaningful. Another parent felt their child has untapped potential and talents that will go unexplored. In general, parents said they wished the school had higher academic expectations for their children. For example, one parent felt the school did not try to teach the child to write by hand and instead IEP goals revolved around teaching keyboarding skills and use of technology to EDUCATION FOR AUTISTIC CHILDREN 75 compensate for disabilities. The parent felt the school chose a path to minimize the services for the child by discontinuing OT to improve hand strength and improve fine motor skills. At age 10, this child is still unable to print even their first name, which contains only two letters. Without increased hand strength and fine motor control, the parent expressed concern the child would not be able to use scissors or tools in the future. For goals to be socially valid for parents, they must address the child’s functional behaviors and result in independence for the child across a spectrum of life skills. Cited by parents were toileting and other self-care (dressing, eating, grooming), vocational skills, use of public transportation and safe navigation in public. Social skills also emerged as an important theme for goals. Parents were less concerned with academic performance, likely because most of the children in question were not performing at grade level, and the children who were achieving academically had social issues that would prevent them from making friends or someday gaining and maintaining employment. Finding: Parents expressed a low degree of social validity for their children’s goals, believing them not challenging enough or able to put the children on a path to independence. Providers were split in the area of goals; those who were not directly contracted by the DOE did not agree that goals were important and relevant. For example, one provider mentioned vocabulary development in one client as being largely irrelevant, citing teaching the child to label items not likely to be found in the child’s natural environment (e.g., exotic animals, sea life) and colors, while basic language and its comprehension was a more appropriate goal. This demonstrates the division between the underlying purpose of public education and private therapy for a medical condition: public schools have a requirement for an academic component; EDUCATION FOR AUTISTIC CHILDREN 76 therefore, teaching a child to recognize a zebra is a part of the curriculum. To the private therapists, it is irrelevant and not useful for an early learner with serious language impairment. Providers directly contracted by DOE were more positive about the goals for their clients, but did express there were more than could be reasonably taught. All providers felt their presence at IEP meetings would be a benefit in goal setting. For interventions to be socially valid to providers, goals needed to be socially significant and relevant to the child’s natural environment. All therapists expressed a desire to help shape client goals through the IEP process. Therapists interviewed felt they should be a part of their clients’ IEP teams. One therapist said the amount of time spent with the client translated to greater understanding of the client’s abilities and weaknesses. Private therapists stated they were better versed at setting appropriate IEP goals for autistic children, reflecting the difference between a “therapy mission” and one to provide education. Schools have the responsibility to provide appropriate grade-level academic instruction. Private therapists countered that this is of little use. “What good is it to know the floor is brown when you don’t really understand what the floor is?”, said one therapist. Therapists consider the attempts by schools to teach young children basic things, such as animal sounds, colors, names of animals (unless they are directly in the child’s home or school environment) to be superfluous and believe language acquisition to be more important than speech (e.g., have the child articulating sounds s/he does not understand). Finding: Providers agreed with parents that goals were not always socially significant for the child’s natural environment. Finding: Providers felt they should shape goals through the IEP process. EDUCATION FOR AUTISTIC CHILDREN 77 Appropriateness of Procedures I defined Appropriateness of Procedures to include the Quantity (Diversity and Intensity) of services; Quality; the IEP Process; Communication; and Safety Procedures. All parents emphasized quality of services and service providers as being more important than the quantity of services (in terms of the variety of services provided); some parents were displeased with the quantity of services, saying their children had services discontinued that they felt were still needed or the duration of services when rendered was too short to be meaningful. Therapists were adamant that qualified providers were the key to meaningful education for children with autism. Although IEPs are goal-oriented, parents and therapists tended to discuss the process and procedural aspects of the IEP, and so I have included a brief discussion of IEP-related statements made during interviews. Quantity Quantity of services is defined by the diversity of services offered, and the intensity at which these services are offered, are frequently cited as critical for autistic children, with 30-40 hours per week of ABA recommended for severe cases, as well as accompanying services to improve speech articulation, reduce sensory overload and improve fine motor skills, as well as gross motor skills. Social skills and functional life skills training are often provided, as well. Parents who were satisfied with their child’s education were likely to be satisfied with the quantity of services their child receives; however, they expressed that they did not actually know what the appropriate amount of time should be. Parents who were dissatisfied had had services they considered necessary for their children terminated. The children who do not receive services beyond basic special education had a full range of services terminated and the parents of EDUCATION FOR AUTISTIC CHILDREN 78 these children did not understand what the justification was, citing a lack of significant improvement by their children in these areas. For example, one child had speech services terminated although there is still significant speech impediment and difficulty with articulation. The parent expressed concern the child would continue to be teased throughout elementary school and beyond if efforts were not made to improve speech quality. It was not a surprise that private therapists found intensity to be a critical factor for two reasons: first, the therapists interviewed are highly educated and trained and therefore rely on what the research says is an appropriate level of intensity; second, private therapists rely on providing therapy to children for their livelihoods. This is not to suggest they do not have the children’s best interests at heart, but economics often factor into one’s viewpoint, either in the school district meting out services, or the recommendation of a provider who augments services. Diversity of Services Diversity of services were said to be insufficient; specifically mentioned as lacking were life skills, social skills and transition services. Parents regarded the lack of transportation services as an issue. Parents who had geographic exceptions to allow their children to attend Mana schools felt since their children needed to be placed out of district to receive a FAPE that transportation should be provided. There were parents whose children’s IEPs do not specify ABA. This was either because school personnel did not feel the child’s needs warranted it, or in two cases, the school personnel inexplicably told parents it should not be specified in an IEP. All parents interviewed believe ABA to be critical to their children’s success. EDUCATION FOR AUTISTIC CHILDREN 79 Parents were also concerned with social skills training for their children; several children do participate in social activities at their schools, but most children do not. For example, one parent felt the school did not fully appreciate the child’s lack of social skills because academic performance was adequate for grade level. The parent stated that because the child can handle the school’s academic curriculum, school personnel do not appreciate the degree of social impairment and how that will impact future growth. Private therapists echoed these thoughts and the private therapists offer social clubs for autistic children. Intensity of Services Parents mentioned intensity of services as being at issue. Parents did not understand how DOE arrived at the number of minutes per quarter of specific services and parents also expressed concern that the services were not offered at an effective intensity when they did occur. For example, one parent stated the child’s speech services were meted out in seven-minute increments several times per week. Given the time needed for transition, especially for a child with autism, concern was expressed that seven minute increments would be totally ineffective. Private Therapists stated they generally are augmenting DOE services, either through TriCare (military) health insurance or for parents who pay out-of-pocket for their children to have additional ABA beyond what is received at school. Such treatment is very expensive; the fact that parents would pay out of pocket for treatment indicates parents feel their students are not receiving ABA at sufficient intensity. Finding. More services are needed to prepare younger children (K through 6) for life skills and social skills. Finding. Intensity level of services, ABA in particular, is not sufficient for all children with an autism diagnosis. EDUCATION FOR AUTISTIC CHILDREN 80 Quality Quality was mentioned consistently as an important component to a FAPE by parents who were satisfied or unsatisfied. Parents expressed concerns that providers are not trained enough in autism’s specific needs and there is too much turnover. Parents said they felt Mana District personnel had a policy in place to prevent families from becoming attached to the child’s service providers, and consciously changed one-to-one providers routinely. Additionally, lack of consistency in service providers was frequently cited as a problem because of the difficulty of many autistic children to accept transitions or change; and because of the educational opportunities lost due to the time it takes the new provider to learn how best to work with the child; parents whose children had one-to-one aides particularly wanted consistency in providers. Quality of Service Providers. Quality of providers emerged as a critical component in provisioning a FAPE by parents and more so by therapist participants. Parents who were satisfied with their child’s education had confidence in the educators and providers—both that they were highly qualified and they understood autism. Provider consistency was a key factor in providing quality services. An example cited by parents was the frequent turnover of Occupational Therapists, one parent saying there had been three OTs for the child during one school year. Another parent said, “They recruit OTs from the Mainland and they have no ties to Hawaii and leave as soon as their contract is up.” One parent complained that the Extended School Year (ESY) sessions did not offer quality teachers and said ESY was “more like a babysitting service”. This parent stated summer sessions should have the same quality of instructors as the regular school year. EDUCATION FOR AUTISTIC CHILDREN 81 Quality of personnel delivering services was considered the most important component to therapists. They keyed on qualifications and credentials of service providers. This was to be expected, as these professionals all had at least Master’s degrees; three were BCBA-certified. They took a more technical approach to determining provider quality than did parents who emphasized personal traits of their children’s providers, whereas therapists wanted to see more BCBAs or those with quantifiable credentials either directly employed by DOE or contracted. They did not think DOE had sufficient personnel to provide ABA services at the intensity levels provided. Providers said quality of DOE Providers overall is lacking; quality of providers was mentioned as a key attribute by every therapist as being critical by all therapists. “I wish DOE would just admit they don’t have people with the necessary skills and allow us more input,” was a complaint of one provider. Qualified Providers emerged as the key factor to providing a FAPE to all therapist participants. Therapists were more likely to mention credentials for providers in addition to quality than were parents, which was not surprising since all were highly-qualified in behavior analysis. Finding. Highly trained service providers are critical to providing a FAPE. Quality of Classrooms. Parents mentioned classroom design as being insufficient for autistic children’s needs (fluorescent lighting in classrooms, not enough vestibular stimulation, not visually attractive). Parents felt classrooms that could simulate real life environments, such as kitchens or stores were important to teaching life skills and should be a fixture in schools. IEP Process Parents who were highly satisfied said they felt like they were part of the IEP process, educators considered the best interests of their child, and they did not feel as though schools EDUCATION FOR AUTISTIC CHILDREN 82 were withholding services based on the cost to implement the IEP. Parents wanted to feel as if they were a part of their child’s IEP team. Parents who were dissatisfied did not feel school personnel heard or applied parent input. “If only they could see what I see at home”, one parent said in questioning how a child’s services could be terminated. Another parent stated, “I would like to know what the buzz words or magic phrases are you have to say to get services.” The IEP process was confusing to some parents. One parent stated that although satisfied with the child’s IEP, the proposed IEP would be presented at the yearly meeting and it was not clear how to alter it. “It’s like you go into the meeting and they present you with the IEP for the year. I don’t know if I am allowed to make changes”, said one parent.” Another parent suggested school personnel should provide the IEP that will be presented at the meeting several days in advance to give parents the opportunity to review it. “I feel like I’m on the spot during the IEP meeting. They are so stressful and when I see the IEP during the meeting, I feel like I’m hit cold with it.” Overall, parents expressed a lack of clear understanding about the IEP process and several expressed the feeling that the schools’ goals in IEP meetings were to reduce services to children. One parent questioned the data the school presented that indicated the child had met all IEP goals and felt this data was not indicative of the child’s abilities. Finding. Parents do not clearly understand the IEP process. Communication Parents were eager to hear how their children were progressing, but in the case of the students with one-to-one aides, parents said communication rarely came from the teachers, but rather from the aides and these communications were too vague to be useful. Parents said they would like to see data that showed where progress was being made or hindered in their children’s EDUCATION FOR AUTISTIC CHILDREN 83 programs but this information was not provided. They also expressed concerns that their children’s teachers were not actually aware of what the child had done during the school day because their children spend a good portion of the day receiving services. Parents specifically mentioned communication as a problem area, but for different reasons. One parent found communication to be too technical to be easily understood, particularly where the IEP process was concerned. Other parents were dissatisfied with communication from the school, saying that they it to be too general to be useful (e.g., “Child had a good day” was mentioned by these parents as a typical entry in their child’s communication log); communication between children’s DOE providers was said to be insufficient to ensure goals were taught consistently. One parent mentioned an incident involving the child’s treatment by a provider; the school conducted an investigation but the parent was not informed by the school and learned of it second hand. Although the parent was not concerned about the severity of the incident in question, transparency in communication was cited as problematic by this parent. “I don’t understand why they didn’t tell me they were conducting an investigation. I know it {the incident} was probably not a big deal, but it makes me question their honesty”, stated the parent involved. Several parents mentioned that poor communication among school personnel (e.g., between general education and special education teachers) was problematic. A parent mentioned the lack of communication between the special education and general education teacher resulted in different academic goals, which confuses the child. The child goes to the special education classroom to reinforce what is being taught in the general education classroom and the lessons are frequently not aligned. Inconsistency in coding behaviors between the special education EDUCATION FOR AUTISTIC CHILDREN 84 teacher and general education teacher was cited as causing confusion in whether or not the child had exhibited problem behaviors. Communication was rated as important by parents; surprisingly, several parents cited it as both a strength and a weakness. Parents who held conflicting opinions in this area cited examples of both good and poor communication from the school. All parents expressed a desire to be a part of their child’s IEP team and wanted to know their communications were read and taken under advisement by the school. Satisfied parents felt their opinions were important to school personnel; parents who expressed distinct dissatisfaction with their child’s FAPE also said their opinions of what their child needs were not taken into account. Private therapists wanted communication in the form of data tracking children’s progress in mastering programs. Overall, they found the quality of communication from schools lacking, saying DOE personnel either did not keep data or did not know how to properly take it. One therapist implied that data from DOE had been manipulated to indicate progress where there was none. Finding. Open communication among all parties at the appropriate level is important and parental inputs should be taken into account. Finding. Data is more useful than anecdotes for measuring progress. Safety Safety was a concern expressed by parents and therapists alike. Therapists and parents shared incidents of elopement. Proper supervision of children at-risk for dangerous behaviors was cited as a concern. Neither parents nor therapists felt the schools properly understood the specialized needs of autism. EDUCATION FOR AUTISTIC CHILDREN 85 Parents mentioned safety issues in the form of child elopement; dangerous climbing; jumping from unsafe heights; improper use of restraint and seclusion (echoed by therapists); and serious food allergies. Parents also mentioned teachers’ lack of understanding of health issues as a significant concern, as well as bullying and teasing. Therapists also mentioned abuse of clients, although these incidents did not occur in Mana District. Therapists also indicated that safety issues were a concern, citing elopement issues by their clients (although the episodes discussed by therapists did not occur in Mana District). These therapists mentioned DOE personnel were not properly trained in restraint and had harmed children, physically and emotionally through improper use of restraints and seclusion. In one case a therapist said the client “was stripped of all dignity and humanity” through the actions of DOE personnel in tying the child to a chair. Elopement and dangerous climbing—several parents were concerned that their children’s supervision for elopement is insufficient. For example, one parent unsuccessfully requested the school provide a barrier to prevent the child from eloping (and possibly jumping) from a second story classroom or to move the child to a first floor classroom. The school’s response has thus far been to put a rolling chalkboard in front of the door; the parent is concerned this is not a sufficient barrier as it is easily moved and will not stop the child from bolting. Another parent stated their child had gotten away from school personnel and climbed onto the school’s roof where the child was apprehended by school staff. One therapist raised a different issue related to elopement. “School personnel do not properly supervise my client,” was stated, “and DOE does not understand this behavior is a result of anxiety.” On the occasions when this child was able to leave school grounds, it was treated as a truancy issue rather than an issue related to the disability. The therapist is concerned that the EDUCATION FOR AUTISTIC CHILDREN 86 treatment the child has received at the hands of DOE personnel will result in delinquency or other problem behaviors. Improper Restraint and Seclusion—Parents expressed concern that school personnel had on occasion improperly restrained their children. Therapists consistently echoed this concern in their interview responses. For example, a parent mentioned an incident where the child claimed to have been restrained while having an anxiety attack (the school denied the child was restrained). The parent did not believe this was an appropriate use of restraint and believes school personnel need to learn non-physical ways to calm the child, citing bruising and scrapes resulting from this incident. A therapist gave the example of a client being sat upon by school personnel to prevent elopement. The therapist stated that the child’s dignity is not preserved in the manner the school uses to control behavior, and is concerned this means of handling the child will result in injury. Allergies—at least two of the children have serious food allergies. Parents of these children expressed concern that the schools do not fully understand the seriousness of this condition. In one case, a child accidentally ate another child’s food causing a reaction; the other child’s teacher provided food as a reward to a child with severe gastrointestinal difficulties in violation of parental and medical directives. The child became seriously ill, resulting in a week’s absence from school. Lack of Understanding of Health Issues—beyond allergies, parents were troubled by a cavalier attitude by some school personnel regarding their children’s serious health problems. One parent mentioned school personnel do not understand the child’s anxiety and do not understand how to deal with this issue; another parent stated some school personnel are ignorant of their child’s physical health issues and have inappropriately required participation in physical EDUCATION FOR AUTISTIC CHILDREN 87 education activities that are harmful to the child. Another child has metal plates inserted above the ankles to address hypotonic issues. This child was forced to participate in running activities in gym class against medical directives until the parent learned this was occurring; the child could have been seriously injured through falling or disrupting the plates. A parent relayed that occurs with some regularity at school. The child can become incontinent if not allowed immediate access to a toilet. This child’s parent said teachers will not allow the child to access the bathroom upon request, which has resulted in accidents and then teasing by other children. Bullying and Teasing—some parents mentioned bullying and teasing as serious concerns. One parent felt school personnel contributed to the problem citing a teacher whose nickname for the child could be considered derogatory; the parent felt the teacher using such a form of address for the child encouraged name-calling by classmates. Conversely, some parents also expressed great confidence in their child’s school for preventing bullying and teasing behavior. This was expressed as a strength in their child’s education. Finding. Schools do not consistently provide a safe and nurturing environment for their students with autism. For Appropriateness of Procedures to be socially valid to parents, services must be of a sufficient quantity, but quality of service providers is a more important factor. Open and transparent communications that result in educators accepting parental input, and a safe environment are also critical factors. EDUCATION FOR AUTISTIC CHILDREN 88 Importance of Effects To be socially valid, the effects of a treatment, therapy or service must be important or have meaningful clinical significance (Finn & Sladeczek, 2001). The effectiveness of an intervention can be evaluated either subjectively or through social comparison by comparing the behavior of a child before and after treatment with that of the child’s peers (Kazdin, 1977). Some parents clearly thought their children would regress at the current level of services; one parent stated the child had already lost skills as a result of specialized services being terminated. The children whose parents feared regression had previously gotten specialized services and were now receiving special education provided through a resource room or fully self-contained classrooms that were insufficient in parents’ opinions for their children’s needs. For example, one parent was concerned with the lack of inclusion the school provides for the child. The child transferred schools at the beginning of the school year and is no longer in an inclusive environment and being pulled out for services, as needed, but rather a fully self- contained classroom. The concern expressed was that the child’s social skills had deteriorated and the child was not getting needed specialized special education services. Most parents expressed satisfaction with at least parts of their children’s education based on the effects they were seeing in their children. However, parents were not sure schools were thinking long-term. “I want <child> to be as independent as possible, to get a job one day. I just don’t know if <the school> is thinking that far ahead.” Finding. Parents expressed uncertainty of their children’s precise educational needs and rely on the IEP team to accurately determine what level of intervention is needed to assure progressive improvement. EDUCATION FOR AUTISTIC CHILDREN 89 Social validity in Importance of Effects was achieved when parents saw improvement in their children’s functioning at home on differing levels, even if these improvements could not be quantitatively expressed. Several parents mentioned increased desire by their children to speak, or overall better engagement with the environment and them by their children. One parent described excitement at seeing the child ask to see friends. One parent expressed the hope that potty training would be accomplished within 3 years’ time. Parents did not seem to expect quantum leaps of improvement. When asked about their child’s best educational moment, most parents expressed they were satisfied at seeing their children attempting new things or being more social and engaging with others. Communication barriers that often accompany autism leave even parents guessing about their children’s capabilities and level of understanding of the world around them. Additional Findings Trust emerged as an additional theme and perhaps to parents, the most important factor. Because trust does not fit within the Social Validity framework, I discuss it separately here. Trust was discussed in two different ways: the need to trust providers with the safety and care of their children, i.e., to prevent physical or emotional harm from coming to the child; or the confidence that providers are doing all they can to deliver the services the child needs, and are honest and forthright in discussing both the child’s needs and disclosing available services, and genuinely care about their child. Trusting Providers with Child’s Safety and Well-Being The ability of parents to confidently entrust their child’s well-being into the care of their providers was discussed by all parents. Trust is perhaps more important for parents of children with autism than it is for parents of typically developing children. This is largely because of EDUCATION FOR AUTISTIC CHILDREN 90 communication difficulties many children with autism have, and the majority of the children of parent participants in this study were non-verbal or minimally verbal, and therefore unable to describe events that occur. Most participants expressed fear of the child being harmed physically and/or emotionally. “I just want them to treat my child as they would their own,” said one parent. For example, one parent was concerned about the child’s one-to-one aide, and stated the child did not like the aide and would say, “Bye-bye school, bye-bye {provider name}” in the mornings to indicate not wanting to attend school and dislike of the aide. The child had previously been excited to go to school. Because the child is minimally verbal, the parent was unsure what the problem could be and expressed concern the aide is harsh with the child; the parent said inquiries to the school resulted in assurances the aide works well with the child but this has not alleviated the parent’s concern. “If that’s the only skills trainer available, then that’s who they will assign to <child>”, the parent said expressing concern the aide and her child are not compatible but the school will not acknowledge the child’s anxiety because there are no other personnel available to assign to the case. Another parent stressed that while there was no issue with trust with the child’s regular providers, cameras should be placed in special needs classrooms to ensure the safety and well being of children who are unable to communicate. This was echoed by another parent who had been informed by a third party about an issue that had occurred with her child and a DOE service provider. Although it was stressed that the child seemed fine, the parent expressed concern that the provider was not treating the child in a respectful manner. Finding. Parents need to feel their child is in a safe and nurturing environment. EDUCATION FOR AUTISTIC CHILDREN 91 Ability to Trust Providers to Provide a FAPE Distrust of DOE was an undercurrent expressed in varying degrees by most participants. Most participants did not cite overt examples of dishonesty, but rather a lack of clarity or willingness to describe criteria for their children to receive services or what services were available. Trust in school personnel emerged as an important theme. Overall, most parents did not have a strong grasp of special education law and the rights it confers to them and their children in the provision of a FAPE. “They pass around this green booklet at the beginning of each meeting and expect that you know what’s in it,” said one parent. There was consensus that school personnel should explain what is required under the law with respect to their child’s education. Parents seemed to understand there were fiscal constraints; dissatisfaction occurred when parents felt school personnel were not being honest and forthcoming. For example, upon changing schools, a parent’s request for a 1-1 aide and was denied because the principal said there could only be one 1-1 aide per classroom and there was already another child in the class with an aide. The parent did not believe this was a policy issue but purely a financial constraint artificially imposed by the school to reduce cost and questioned the honesty of the principal making that statement. This questionable denial of a service made the parent doubt the school’s provisioning of a FAPE. Finding. Parents are uncertain what the precise intervention needs of their children are; therefore it is imperative they are able to trust providers’ recommendations. Parents whose input had been included in the IEP tended to have a higher degree of trust of DOE providers and were satisfied overall that their child’s IEP goals and the service levels to achieve those goals had been thoughtfully considered by the school. One parent stated the EDUCATION FOR AUTISTIC CHILDREN 92 school was always open to suggestions for the child’s programming and inspired feelings of goodwill and trust. “When there is something I want <the child> to learn, I just call the teacher and we talk about it…”, and the request is generally accepted without a formal meeting of the IEP team. Finding. Parental participation in the IEP process increases trust by parents. Conclusions As anticipated, quality of services and service providers were key factors parents considered in assessing their child’s FAPE; the providers interviewed echoed this view. Open and quality communications also emerged and an important element in provisioning a FAPE and just as communications with parents were important, it was also deemed important that all individuals working with the child communicate well and often. Therapists also found communication important, but their judgment of effective communication was a technical approach of charting data from therapy sessions. Intangible themes that emerged were the importance of trust that educators instill in parents. Parents listed such traits as sincerity, honesty, and caring as being important qualities for their children’s educators to possess. However, based on the participants in this study, results of interventions were not of primary importance in defining a FAPE. Virtually every parent was concerned that their child’s IEP and services provided were fairly and properly determined. It was the process and honest attempt by educators to achieve results that was most important. This was clear when I asked parents what they expected for their child’s progress in a year’s time and in three years’ time; each parent began their response with, “I don’t know.” Because autistic children tend to gain skills slowly, but in a step-wise fashion, it is difficult to predict where a child will be in the EDUCATION FOR AUTISTIC CHILDREN 93 future. Parents would either project their reasonable hopes for progress, or express their fear that their child’s current services would prevent progress or result in regression. Although quantity of services was a factor, parents found their child’s FAPE to be socially valid when they trusted the process used to determine the services their child would receive by qualified professionals. When there was trust in the educators and the integrity of the process, parents believed their children were receiving evidence-based services through the school. In the next chapter, I present ideas that have emerged as a result of these findings as well as the implications for parents and DOE. I also offer recommendations for additional research in this area. EDUCATION FOR AUTISTIC CHILDREN 94 CHAPTER FIVE: CONCLUSIONS Discussion, Implications, and Recommendations for Future Research This study examined the factors parents of students with autism in Hawaii’s Mana District consider important in the provision of a FAPE. A qualitative case study of Mana District’s educational services was performed through interviews with parents of children with autism who attend Mana schools, and therapists who treat autistic children who attend public schools on Oahu, to include Mana District. The study sought to answer the following question: What are the key factors parents of autistic students in Mana District, Oahu, Hawaii expect in the provision of a FAPE for their children? To answer this question, data was collected through a series of interviews with parents of seven children with autism and four behavior therapists, two in private practice, the other two contracted directly by DOE. Data about Mana District was collected through meetings with District personnel unrelated to this study, through DOE data available to the public, and through published studies of Hawaii special education. All data collected was transcribed and key phrases were entered into a table. Responses were then analyzed such that themes emerged for coding responses with a focus on the proposed themes outlined within my Conceptual Framework and utilized Social Validity parameters to draw conclusions. This chapter will unite the lessons that were learned as a result of this study through a summary of the study’s findings. It will address the implications for parents and educators of autistic children and offers recommendations for further study in conclusion. Summary of Findings As anticipated, quantity and quality of services were key factors in a parent’s satisfaction with their child’s FAPE. However, parents agreed that quantity in and of itself was not as EDUCATION FOR AUTISTIC CHILDREN 95 important as the quality of the services and providers, and appropriate goals that addressed critical functional impairments were considered essential. Safety, and open, honest communications from schools were also cited frequently, as well as a feeling of contribution in being a part of their child’s IEP team as playing an important role in satisfaction with a FAPE. However, trust in DOE providers was perhaps the most important factor to parents. Parents wanted to trust that providers had honestly and sincerely determined their child’s programs and were implementing them to the best of their abilities. They further wanted to trust providers to be kind to their children and to ensure their safety while at school. Social Validity Findings The Social Validity construct informed my analysis of the assessment of the FAPE provided to autistic students by parents and therapists. Significance of Goals Findings. The following findings demonstrate the degree to which parents and service providers viewed of the significance of goals.  Parents expressed a low degree of social validity for their children’s goals, believing them not challenging enough or able to put the children on a path to independence.  Providers felt goals were not always socially significant for the child’s natural environment; they should help ensure socially valid goals through the IEP process. Appropriateness of Procedures Findings. The following findings demonstrate the degree to which parents and service providers viewed the appropriateness of procedures.  More services are needed to prepare younger children for life skills and social skills.  Intensity level of services, ABA in particular, is not sufficient.  Open communication among all parties at the appropriate level is important and parental inputs should be taken into account. EDUCATION FOR AUTISTIC CHILDREN 96  Data is more useful than anecdotes for measuring progress.  Schools do not consistently provide a safe and nurturing environment for their students with autism. As anticipated, the quantity of services, particularly in terms of intensity, was important to parents. Parents keyed on life skills and social skills. Intensity was of particular interest therapists interviewed, as they are aware of the need for 30 – 40 hours per week of ABA (Lovaas, 1987). Findings regarding Trust. Trust was a critical factor in parental satisfaction with their child’s FAPE. Although it seems obvious that school personnel should be open and honest in their assessments service-level recommendations to provide a FAPE, with resource limitations and a litigious climate parents felt school personnel did not disclose all available services and programs. When parents felt their concerns and objectives were heard and expressed in IEP goals, there was increased trust.  Finding: Parents are uncertain what the precise intervention needs of their children are; therefore it is imperative they are able to trust providers’ recommendations.  Parental participation in the IEP process increases trust by parents. The findings from this case study also suggest that parents lack knowledge of the technical aspects of their child’s education. I had anticipated that parents might prefer one ABA approach over another, but this was not the case. Parents wanted to trust that educators knew which techniques would work best for their child. Providers also tended to be vague regarding specific ABA protocols they were using and referred to using a verbal behavior approach as defined by Skinner (1957). Use of Evidence-Based Practices was of great importance to EDUCATION FOR AUTISTIC CHILDREN 97 providers because as discussed in Chapter 2, these have been shown through the literature to achieve results in reducing problem behaviors and making cognitive gains. Implications for Parent Participants The findings regarding parental opinions of their child’s FAPE suggested there was not an intimate knowledge of how their child’s programs were determined or being carried out. Parents could cite minutes for various services from IEPs, but there was a general lack of knowledge as to how these services were implemented and the range of services their child required. In eliciting desired behaviors from autistic children, such as speech, it is important all involved with the child’s care use the same approach. Because there should be consistency between home and school for certain skills, parent training is indicated and there must be willingness on the part of parents to work with their children at home. The parents I interviewed expressed an interest in working with their children and several have received in-home training from DOE personnel that they found to be valuable. Trust was an important component to a parent feeling satisfaction with their child’s FAPE. Yell (2000) emphasized the importance of trust, as did Hill (2009). In emphasizing the importance of trust, Stoner (2006) stated that poor communication led to lack of trust and ultimately, conflict between parents and school personnel. Implications for DOE Personnel The findings of this study suggest there are areas for improvement that may be of interest to DOE personnel. These areas are: lack of understanding of autism by DOE personnel; insufficient parental input in IEP development; lack of understanding of special education law and procedures; the importance of empathy; and an appreciation of safety issues specific to the autistic population. EDUCATION FOR AUTISTIC CHILDREN 98 All parents and all but one of the therapists stated concerns that DOE personnel in close and continual contact with their children did not adequately understand autism. Because of the growing numbers of autistic students and trends toward inclusion in the general education classroom, specialized training should be provided to all DOE personnel, to include general education teachers and those who interact with students with autism. Special education teachers should be required by DOE to be trained in current evidence-based methods for educating autistic students. Although it is not practical to require BCBA certification for all special educators, focused training and courses at a specified number of hours should be required each year to ensure retention of material and currency of knowledge. Paraprofessionals, or those who provide direct instruction to students with autism should also receive regular training and observation of their instructional technique. Educators must ensure parents are involved in a meaningful way in developing their child’s special education programming. Parents agreed that their input should be included in IEPs and in determining services. Not only does IDEA provide this as a parental safeguard, including parents and ensuring they are satisfied with the school’s programming and could result in decreased litigation (Shuran & Robyler, 2012). Yell (2009) recommended training for school personnel to emphasize special education law and requirements, as well as instruction for communicating with parents. This training should be extended to parents to ensure they are apprised of their rights under the law. Ensuring parents understand their rights will inspire more trust by parents of the DOE. Parents wanted to feel school personnel genuinely cared about their children. Hill (2009) found that parents were willing to overlook school and personnel shortcomings if they found the individuals who worked with their children to be kind, caring and empathetic. This was the case EDUCATION FOR AUTISTIC CHILDREN 99 with the participants in this study, as well. Parents told me stories that were in some cases very negative, yet overall were positive in their assessment of their child’s education. For example, the parent that discussed the child climbing on the roof of the school went on to say there were no safety concerns; the parent whose child tried to jump from a second story classroom simply stated teachers and service providers should more closely monitor the child but did not have harsh words. Educators should look for ways to build empathy, perhaps through increased contact with parents to appreciate challenges in the home. Educators must be trained in safety concerns specific to children with ASD. Wandering, elopement, bolting into traffic or other unsafe areas is frequently emblematic of children with autism; research shows 49% of autistic children have engaged in these behaviors past the age of 4 years (Anderson, et al, 2012). One parent described seeing a child’s classmate (also autistic) wandering down a busy street during school hours. Personnel who are in regular contact with autistic students must be aware of the risk factors and the need for intensive supervision. Accommodations should be made for children who engage in dangerous climbing and jumping, as evidenced by the child who climbed onto the school roof, or the child who has tried to jump from the second story classroom. Recommendations for Future Research The findings of this study resulted in several observations and recommendations that may be of value to school systems and educators of autistic children or to those who advocate on behalf of them in the IEP process. The purpose of this research was to identify areas that are of utmost important to parents in their child’s education, indicating which areas produced the greatest dissatisfaction for parents with the schools so that measures can be taken to ultimately improve education for children with autism. EDUCATION FOR AUTISTIC CHILDREN 100 I have identified several potential areas for future research relating to parental perceptions regarding their autistic child’s FAPE. First, because I limited the study to children 5 – 12 years of age, it would be interesting to explore what role age or grade level plays in parental satisfaction. Hill (2009) found that parental satisfaction with their autistic child’s public education decreased as the child’s age increased. Mothers of younger children were the most satisfied (those with children in kindergarten to third grade); satisfaction declined significantly after this point (Hill, 2009), which concurs with my observation that parents of younger children were more satisfied. In this study, parents of children ages 10-12 seemed to have the most concerns for their children’s education. The perceptions of parents whose children are nearing adulthood would be of interest, as these children will soon be ageing out of the DOE system and will need to find employment. Secondly, broadening the study to interview parents across Oahu or even the entire State of Hawaii would give additional insights into the state of autism education in Hawaii. Mana District is the smallest district on Oahu and the quality of autism education and its providers it offers are not comparable with other districts in the state. Also, as mentioned earlier, Mana District has a significant number of autism specialists with BCBA certification overseeing programming and implementation for autistic students. However, personnel without such stellar credentials typically implement these programs. Parents and therapists alike identified quality of providers as a key element, and although therapists tended to define it by credentials and education, few parents mentioned qualifications in discussing quality providers. The characteristics that comprise quality providers by parental perception were not addressed in this study. Additional research to identify what attributes parents ascribe to a trained and knowledgeable staff would fill a current knowledge gap. Parents also stated they wanted kind EDUCATION FOR AUTISTIC CHILDREN 101 and sincere professionals working with their children. How might these characteristics be defined? Third, a path for additional research would be teacher and DOE provider perceptions and observations to triangulate with parental and therapist data to strengthen the validity of the results of this study. Parents obviously do not know everything that transpires during a child’s school day, and private therapists are biased to believe their services are superior to those of the public school system. Given the expense of these sessions, private therapists have an incentive to convince parents the services they offer children are worth the investment. A final area that stands out is in the area of safety of these at-risk children. Anecdotes provided by both parents and therapists indicate that closer supervision of these children is needed and school personnel need a greater understanding of the services that should be provided. Bullying and teasing were identified as areas of concern by several parents, in keeping with a large study recently released that found children with Asperger’s or those with comorbid conditions with high levels of autistic traits were the most likely to be victimized (Zablotsky et al., 2014). Because students with autism, even high-functioning individuals with Asperger’s Syndrome, lack social skills and typically have few friends, they are at high-risk for bullying and isolation. A study to quantify problem the extent of bullying with recommendations for mitigation and supports for autistic children is recommended. The anecdotes cited by parents led me to conclude safety issues unique to students with ASD are not well understood by school personnel. As discussed earlier, research tells us for reasons not fully understood; individuals with autism are prone to elopement and wandering from safe locations (Anderson, et al., 2012; Lawlor & Solomon, 2013). As I was conducting this study, a 5-year old child with autism in a Honolulu school was able to slip out of his classroom EDUCATION FOR AUTISTIC CHILDREN 102 unnoticed, despite having a paraprofessional assigned solely to him. He was able to leave school grounds and was found hours later at a location nearly five miles away (Matthews, 2014). This indicates the stories shared by my study participants were not unique to Mana District. If the goal is for schools to provide safer environments for children with autism, then further research is recommended to identify processes and procedures that can be implemented to ensure children at risk for engaging in dangerous behaviors are safe and accounted for. Conclusion This study found that parents find their child’s FAPE to be socially valid if quality providers provide services at the right intensity needed; this was an expected result. From parental and therapist responses, a FAPE consists of the required services, at the right intensity for the individual child provided by caring and empathetic providers with objectives developed in conjunction between school personnel with input from parents and therapists. Beyond basic quality and quantity of services, open communication and a feeling of being part of the child’s education process, i.e., being a valued part of the IEP team was important to parents. Further, valid safety concerns by parents, some of whom told harrowing stories of life-threatening events that occurred in schools and cavalier responses to potential crisis events emerged as an area DOE needs to take more seriously. It was clear from responses of providers and parents that Mana District is on the right path in providing a FAPE to autistic children who attend its schools, and has addressed some parental concerns about social and life skills training through friendship programs and specialized classrooms. However, only a select number of schools to date have these programs or modified classrooms. EDUCATION FOR AUTISTIC CHILDREN 103 Parents indicated that trust in DOE and the providers who spend time with their children was the most critical factor in their satisfaction of the service provided to their children. Negativity bias is likely more of a factor in Hawaii schools because of Hawaii’s history of neglect in Special Education. Although the Felix Consent Decree addressed many problem areas, there is still a lot of work to be done. It appears Mana District has set the right course; now other districts must follow suit. EDUCATION FOR AUTISTIC CHILDREN 104 References Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: Pilot randomized controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45(8), 1420 – 1430. Altarac, M. (2008). Prevalence of allergies in US children with Autism. Annals of Epidemiology, 18(9); 725. American Psychiatric Association. (2013). Diagnostic and Statistical Manual of Mental Disorders (5 th ed.). Arlington, VA: American Psychiatric Publishing. Anderson, C., Law, K. J., Daniels, A., Rice, C., Mandell, D. S., Hagopian, L. & Law, P.A. (2012). Occurrence and family impact of elopement in children with Autism Spectrum Disorders. Pediatrics; 130, 870 - 877. Arick, J. R., Krug, D. A., Fullerton, A., Loos, L., & Falco, R. (2005). School-based programs. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (pp. 1003–1028). Hoboken, NJ: Wiley. Baker, B.D., Green, P.C. & Ramsey, M.J. (2011). Financing Education for Children with Special Needs. Accessed from: http://schoolfinance101.files.wordpress.com/2011/01/sef-baker-green-ramsey-final.pdf Bauman, M. L. (2010). Medical Comorbidities in Autism: Challenges to Diagnosis and Treatment. Journal of the American Society for Experimental NeuroTherapeutics, 7(3), 320 -327. Baxter, P. & Jack, S. (2008). Qualitative case study methodology: Study design and implementation for novice researchers. The Qualitative Report, 13(4), 544 – 559. EDUCATION FOR AUTISTIC CHILDREN 105 Benitez, D., Meinders, D., Kubinec, J., & Reynolds, V. (2011). Hawaii Department of Education Special Education Review. Sacramento: WestEd Center for Prevention and Early Intervention. Billstedt, E., Gillberg, C. & Gillberg, C. (2005). Autism after adolescence: Population-based 13- to 22-year follow-up study of 120 individuals with autism diagnosed in childhood. Journal of Autism and Developmental Disorders, 35(3), 351 – 360. Bitterman, A., Daley, T. C., Misra, S. Carlson, E., & Markowitz, J. (2008). A national sample of preschoolers with autism spectrum disorders: Special educations services and parent satisfaction. Journal of Autism and Developmental Disorders, 38(8), 1509 – 1517. Blumberg S., Bramlett, & Kogan, et al. (2013). Changes in prevalence of parent-reported autism spectrum disorder in school-aged U.S. children; 2007 to 2011 – 2012. National Health Statistics Reports, no 65. Hyattsville, MD: National Center for Health Statistics. Board of Education of Hendrick Hudson Central School District v. Rowley, 458 U.S.176 (1982). Brown v. Board of Education, 347 U.S. 483 (1954). Burilovich ex rel. Burilovich v. Bd. Of Educ. of the Lincoln Consolidated Sch., 208 F.3d 560 (6th Cir. 2000). Callahan, K., Henson, R. K., & Cowan, A. K. (2008). Social validation of evidence-based practices in autism by parents, teachers and administrators. Journal of Autism and Developmental Disorders, 38(4), 678 – 692. Centers for Disease Control. (2012). Autism Spectrum Disorders. Retrieved from www.cdc.gov/ncbddd/autism/data.html Chambers, J. G., Shkolnik, J. & Pérez, M. Special Education Expenditure Project, (June 2003). Total Expenditures for Students with Disabilities, 1999 – 2000: Spending Variation by Disability, Report 5.. EDUCATION FOR AUTISTIC CHILDREN 106 Charman, R. (2010). Developmental approaches to understanding and treating Autism. Folia Phoniatrica et Logopaedica, 62(4), 166 – 177. Chorpita, B.F. and Donkervoet, C. (2005). Implementation of the Felix Consent Decree in Hawaii: The impact of policy and practice development efforts on service delivery. In Handbook of mental health services for children, adolescents, and families (pp. 317-331). DOI: 10.1007/0-387-23864-6 21New York, NY: Kluwer Academic/Plenum. Code of Federal Regulations. (2008). Title 34, (§) 300.8 (c), revised as of 2008. Cohen, H., Amerine-Dickens, M., & Smith, T. (2006). Early intensive behavioral treatment: Replication of the UCLA model in a community setting. Developmental and Behavioural Pediatrics, 2006, 27(2), 145 - 155. Coke, M. & Kaneshige, V. (January 2013). Autism Spectrum Disorders and mandated benefits coverage in Hawaii. Honolulu, Hawaii: Legislative Reference Bureau,. Retrieved from http://www.hawaii.gov/lrb. Coman, D., Alessandri, M., Gutierrez, A., Novotny, S., Boyd, B., Hume, K., Sperry, L. & Odom, S. (2012). Commitment to classroom model philosophy and burnout symptoms among high fidelity teachers implementing preschool programs for children with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 43(2); 345 – 360. Council for American Private Education. Private School Statistics at a Glance. Germantown, MD:” Author. Retrieved from www.capenet.org/facts/html. Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., Donaldson, A. and Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with Autism: The Early Start Denver Model. Pediatrics, 125(1), e17 – e 25. EDUCATION FOR AUTISTIC CHILDREN 107 deBoer, S. R. (2009). Successful Inclusion for Students with Autism: Creating a Complete, Effective ASD Inclusion Program. Hoboken, NJ: Jossey-Bass. DeNavas-Walt, C., Proctor, B. D. & Smith, J. C. (2013). U.S. Census Bureau. Current Population Reports: Income, Poverty and Health Insurance Coverage in the United States: 2012. Washington, DC: U.S. Government Printing Office. Drasgow, E., Yell, M.L. & Robinson, T.R. (2001). Developing legally correct and educationally appropriate IEPs. Remedial and Special Education, 22(6), 359 – 373. Education for All Handicapped Children Act of 1975, U.S.C. §1400 et. seq. Enwefa, R., Enwefa, S. & Nyarambi, A. (2012). Autism and Sensory Processing Disorders for educators, speech language pathologists, and other health professionals: Unraveling the mystery behind it. Conference Proceedings from the Joint 2012 National Conference of the National Association of African American Studies, the National Association of Hispanic and Latino Studies, the National Association of Native American Studies, and the International Association of Asian Studies. Baton Rouge, LA, February 13 – 18, 2012. Etscheidt, S. (2003). An analysis of legal hearings and cases related to Individualized Education Programs for children with autism. Research & Practice for Persons with Severe Disabilities, 28(2), 51 – 69. Farquhar, J. (2012). Case study research methods for business. London: Sage Publications. Fein, D. (2008). Recovery in Autism: Does it exist and what does it mean? Japanese Journal of Cognitive Neuroscience, 10, 3 – 8. Felix v. Lingle Consent Decree (2003). HB 200, HD1, SD1, CD1, State Budget, Section 48, Act (2003 Legislature). EDUCATION FOR AUTISTIC CHILDREN 108 Finn, C. A. & Sladeczek, I. E. (2001). Assessing the social validity of behavioral interventions: A review of Treatment Acceptability Measures. School Psychology Quarterly, 16(2), 176 – 206. Fish, W.W. (2006). Perceptions of parents of students with Autism towards the IEP Meeting: A case study of one family support group charter. Education, 127(5), 56 – 68. Flanders, S. C., Engelhart, L., Whitworth, J., Hussein, M. A., Vanderpoel, D. R., & Sandman, T. (2006). The economic burden of pervasive developmental disorders in a privately insured population. Managed Care Interface, 19(8), 39–45. Fray, David. From: Hawaii State Legislature. Hearing of the House Health Committee, “Relating to Health: Mandatory Health Insurance Coverage Autism Spectrum Disorders.:” (Date: 3/12/14). Retrieved on 3/21/2014 from http://hpr2.org/post/legislature- addresses-autism-session Fukunagu, L., Simonelli, S. & Sperry, L. (2013). Individualized Educational Support Strategies for Students with Autism in Inclusive Classroom Settings. Retrieved from www.sig.hawaii.edu/products/briefs/EPB_Autism.pdf Gesundheit, B., Rosenzweig, J.P., Naor, D., Lerer, B., Ditza, A.Z., Procházka, V…Ashwood, P. (2013). Immunological and autoimmune considerations of Autism Spectrum Disorders. Journal of Autoimmunity, 44, 1 – 7. Gillberg, C. and Steffenburg, S. (1987). Outcome and prognostic factors in infantile autism and similar conditions: A population-based study of 46 cases followed through puberty. Journal of Autism and Developmental Disorders, 17(2), 273 – 287. Gillham, B. (2010). Case Study Research Methods. London: Continuum International. EDUCATION FOR AUTISTIC CHILDREN 109 Golafshani, N. (2003). Understanding Reliability and Validity in Qualitative Research. The Qualitative Report, 8(4), 597 – 607. Graham, L. T. (2003). Parental Satisfaction with the Special Education Process. (Unpublished doctoral dissertation). University of Virginia, Charlottesville, VA. Greenspan, S. I., & Wieder, S. (2006). Engaging autism: Using the floortime approach to help children relate, communicate and think. Philadelphia, PA: Da Capo. Gresham, F. M., Cook, C. R., Crews, S. D., & Kern, L. (2004). Social skills training for children and youth with emotional and behavioral disorders: Validity considerations and future directions. Behavioral Disorders, 30(1), 32–46. Greshem, F. M., Beebe-Frankenberger, M. E. & Macmillan, D. L. (1999). A selective review of treatments for children with autism: Description and methodological considerations. School Psychology Review, 28(4), 559 – 575. Harrower, J.K. and Dunlap, G. (2001). Including Children with Autism in General Education Classrooms: A Review of Effective Strategies. Behavior Modification, 25(5), 762 – 784. Hawaii State Department of Education. (2014). Hawaii public school enrollment grows by 2,000 students. Honolulu, HI: Author. Retrieved from: www.hawaiipublicschools.org Hawaii Department of Education (2009). Superintendent’s Annual Report: 2009. Honolulu, HI: Author. Hebbeler, K., Levin, J., Perez, M., Lam, I., & Chambers, J. (2009). Expenditures for early intervention services. Infants & Young Children, 22(2), 76–86. Hebbeler, K., & Spiker, D. (2011). Cost-effectiveness and efficacy of programs. In C. J. Groark (Series Ed.) & S. Maude (Vol. Ed.), Early childhood intervention: Shaping the future for EDUCATION FOR AUTISTIC CHILDREN 110 children with special needs and their families, Vol 1 (pp. 173 – 207). Santa Barbara, CA: ABC-CLIO. Helt, M., Kelley, E., Kinsbourne, M., Pandey, J., Boorstein, H., Herbert, M., and Fein, D. (2008). Can children with Autism recover? If so, how? Neuropsychology Review (2008) Volume 18(4), 339 – 366. DOI: 10.1007/s11065-008-9075-9 Hill, P. (2009). Mothers of Students with Autism: Their Experiences with Public Education. . Retrieved from ProQuest Dissertations and Theses. (UMI: 3374317) Holland, C. D. (2010). Autism, insurance and the IDEA: providing a comprehensive legal framework. Cornell Law Review, ISSN 0010-8847, 09/2010, 95(6), 1253 – 1282. Jacobs, L., (2010). Equality, adequacy, and stakes fairness: Retrieving the equal opportunities in education approach. Theory and research in Education. 2010, 8(249). Individuals with Disabilities Education Act, 1975, 2004. Joy, S. M. (2008). The impact of legislation and litigation on the education of students with Autism Spectrum Disorders. (Doctoral dissertation). Retrieved from ProQuest, UMI Dissertations Publishing. Vol 69. Kalaci, S. (2008). Students with Autism left behind: No Child Left Behind and the Individuals with Disabilities Education Act. Thomas Jefferson Law Review, 30(2), 723 – 750. Kanner, L. (1943). Autistic disturbances of affective contact. The Nervous Child, 2, 217 – 250. Katsyiannis, A., Yell, M. L., & Bradley, R. (2001). Reflections on the 25th anniversary of the individuals with disabilities education act. Remedial and Special Education, 22(6), 324. Kazdin, A. E. (1977). Assessing the clinical or applied importance of behavior change through social validation. Behavior Modification, 1(4), 427-452. EDUCATION FOR AUTISTIC CHILDREN 111 Keenan, M., Kerr, K. P., & Dillenburger, K. (2000). Parents' education as autism therapists: Applied behaviour analysis in context. Philadelphia, PA: Jessica Kingsley. Kern, L., & Manz, P. (2004). A look at current validity issues of school-wide behavior support. Behavioral Disorders, 30(1), 47–59. Koegel, L.K., Robinson, S. & Koegel, R.L. (2010). Empirically supported intervention practices for Autism Spectrum Disorders in school and community settings: Issues and practices. In W. Sailor, G. Dunlap, G. Sugai, & R. Horner (Eds.), Handbook of Positive Behavior Support: Issues in Clinical Child Psychology (pp. 149-176). New York, NY: Springer. Koegel, L. K. (2000). Interventions to facilitate communication in Autism. Journal of Autism and Developmental Disorders, 30(5), 383–392. Lang, R., O’Reilly, M. F., Sigafoos, J., Machalicek, W., Rispoli, M., Shogren, K., …Hopkins, S. (2010). Review of teacher involvement in the applied intervention research for children with autism spectrum disorders. Education and Training in Autism and Developmental Disabilities, 45(2), 268 – 283. Levy, S. E., Mandell, D. S. & Schultz, R. T. (2009). Autism. Lancet, 374(9701) 1627 – 38. Loefgren, E. (2011). The missing piece of the autism jigsaw puzzle: How the IDEA should better address disciplinary procedures. Law and Psychology Review, 35, 225-260. Long, J. (2011). Foundational supports and interventions for students with Autism Spectrum Disorders. Paper presented at the Midwest Symposium for Leadership in Behavior Disorders. Kansas City, KS. Lord, C., Rutter, M., Goode, S. et al (1989). Autism Diagnostic Observation Schedule: A standardized observation of communicative and social behavior. Journal of Autism and Developmental Disorders. 19(2): 185 – 212. EDUCATION FOR AUTISTIC CHILDREN 112 Lovaas O.I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9. DOI:10.1037/0022-006X.55.1.3 MacFarlane, J. R. & Kanaya, T. (2009). What does it mean to be Autistic? Inter-state variation in special education criteria for Autism services. Journal of Child and Family Studies, 18(6), 662 – 669. Mandell, D. S., Cao, J., Ittenbach, R. & Pinto-Martin, J. (2006). Medicaid expenditures for children with autism spectrum disorders: 1994 – 1999. Journal of Autism and Developmental Disorders, 36(4), 475 – 485. Mandlawitz, M.R. (2002). The Impact of the Legal System on Educational Programming for Young Children with Autism Spectrum Disorder. Journal of Autism and Developmental Disabilities, 32(5), 495 – 508. Matayoshi, K. (2011). Hawaii Public Schools: Special Education Review. Report to the Hawaii State Senate and House Committees on Education, November 14, 2011. Mandell, D. S., Morales, K. H., Xie, M., Lawer, L. J., Stahmer, A. C., & Marcus, S. C. (2010). Age of diagnosis among Medicaid-enrolled children with autism, 2001–2004. Psychiatric Services, 61(8), 822-829. DOI:10.1176/appi.ps.61.8.822 Matthews, K. (2014). School safety concerns raised after boy goes missing. [Video file] (2014, February 26). Retrieved from http://khon2.com/2014/02/26/school-safety-concerns-raised- after-boy-goes-missing/ Maxwell, J. A. (2012). Qualitative Research Design: An Interactive Approach. Thousand Oaks, CA: Sage. EDUCATION FOR AUTISTIC CHILDREN 113 Media Center. (2014). Van Hollen, McKinley, Walz, Gibson, Huffman, Reichert Introduce Bipartisan IDEA Full Funding Act [Press release]. Retrieved from http://walz.house.gov/media-center/press-releases Mesibov, G. B., Shea, V. & Schopler E. (2005). The TEACCH approach to autism spectrum disorders. New York, NY: Plenum. Morrier, M. J., Hess, K. L. & Heflin, L. J. (2011). Teacher training for implementation of teaching strategies for students with autism spectrum disorders. Teacher Education and Special Education, 34(2), 119 – 132. National Autism Center. (2009). Evidence-based practice and autism in the schools: A guide to providing appropriate interventions to students with autism spectrum disorders. Randolph, MA: Author. National Center for Education Statistics. (2009). The Condition of Education 2009 (NCES 2009- 081), Table A-32-1. Washington, DC: Author. National Council on Disability. (2005). Individuals with disabilities education act burden of proof: On parents or schools? Position statement. Retrieved November 7, 2013 from http://www.ncd.gov/newsroom/publications/2005/burdenofproof.htm#executive National Research Council. (2001). Educating children with autism. Washington, DC: National Academy Press. Oliveira, G., Diogo, L., Grazina, M, Garcia, P., Ataíde, A., Marques, C.,…Oliveira, C.R. (2005). Mitochondrial dysfunction in autism spectrum disorders: a population-based study. Developmental Medicine & Child Neurology, 47, 185 – 189. Pacific Business News. (2010). 1 in 6 Hawaii students attends a private school. Honolulu, HI: Author.. Retrieved on September 5, 2010 from http://www.bizjournals.com/pacific/stories/2010/09/06/story4.html EDUCATION FOR AUTISTIC CHILDREN 114 Pellicano, E. (2010). The development of core cognitive skills in Autism: A 3-Year Prospective Study. Child Development, 81(5), 1400 – 1416. Quinn, Jr., J. P. (2011). Impact of the inclusion of students with Autism on the academic achievement of general education students. Submitted to: Walden University College of Education, February 2011. Renty, J. & Roeyers, H. (2005). Satisfaction with formal support and education for children with autism spectrum disorder: the voices of the parents. Child: Care, Health and Development, 32(3): 29 March 2006. Rock, M.L. (2000). Parents as equal partners: Balancing the scales in IEP development. Teaching Exceptional Children, 32(6), 30 – 37. Rogers, S. & Vismara, L. (2008). Evidence-Based Comprehensive Treatments for Early Autism. Journal of Clinical Child & Adolescent Psychology, 37(1), 8 - 38. Rozin, P. & Royzman, E. B. (2001). Negativity Bias, Negativity Dominance, and Contagion. Personality and Social Psychology Review, 5(4), 296 – 320. Ruble, L.A., McGrew, J., Dalrymple, N. & Jung, L.A. (2010). Examining the quality of IEPs for young children with Autism. Journal of Autism and Developmental Disorders, 40(12), 1459 – 1470. Sallows, G. O. & Graupner, T. D. (2005). Intensive behavioral treatment for children with autism: Four-year outcome and predictors. American Journal on Mental Retardation. 110(6), 417 -438. Scharpe, D.L. & Baker, D.L. (2007). Financial issues associated with having a child with Autism. Journal of Family and Economic Issues, 28(2), 247 – 264. EDUCATION FOR AUTISTIC CHILDREN 115 Schopler, E., Brehm, S., Kinsbourne, M. and Reichler, R. (1971). The effect of treatment structure on development of Autistic children. Archives of General Psychiatry, 24(5), 415 – 421. Scull, J. and Winkler, A.M. (2011). Trends in Special Education. Washington DC: Thomas B. Fordham Institute. Shriberg, L.D., Paul, R., Black, L.M. & van Santen, J.P. (2011). The hypothesis of Apraxia of Speech in children with Autism Spectrum Disorder. Journal of Autism and Developmental Disorders, 41(4), 405 – 426. Shuran, M. B. & Roblyer, M. D. (2012). Legal Challenge: Characteristics of Special Education Litigation in Tennessee Schools. National Association of Secondary School Principals. NASSP Bulletin, 96.1, 44 – 66. Skinner, B. F. (1957). Verbal Behavior. New York, NY: Prentice-Hall. Simpson, R.L. (2005). Evidence-based practices and students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 20(3), 140 – 149. Slater, A. E., & Norlin, J. W. (2007). Autism case law: A desktop reference to key decisions. Horsham, PA: LRP. Smith, T., Groen, A.D., & Wynn, J.W. (2000). Randomized trial of intensive early intervention for children with pervasive development disorder. American Journal on Mental Retardation, 105(4), 269 – 285. Solomon, O. & Lawlor, M. C. (2013). “And I look down and he is gone”: Narrating autism, elopement and wandering in Los Angeles. Social Science and Medicine, (94), 106 – 114. Strain, P.S., Barton, E.E. & Dunlap, G. (2012). Lessons learned about the utility of social validity. Education and Treatment of Children, 35(2), 183 - 200. EDUCATION FOR AUTISTIC CHILDREN 116 Starr, E. M. & Foy, J. B. (2012). In parents’ voices: The education of children with Autism Spectrum Disorders. Remedial and Special Education, 33(4), 207 - 216. Stake, R. (1995). The art of case study research. Thousand Oaks, CA: Sage. Stake, R. (2000). Case studies. In N. K. Denzin & Y.S. Lincoln (Eds.), Handbook of qualitative research (pp. 434 – 454). Thousand Oaks, CA: Sage. Star Advertiser. (2010). Special-education costs rise and so do questions. Posted 10:33A.M HST, December 13, 2010. Author. Accessed from: http://www.staradvertiser.com/news/Special- education_costs_rise_and_so_do_questions.html?id=111804849 Stoner, J. B. & Angell, M. E. (2006). Parent perspectives on role engagement: An investigation of parents of children with ASD and their self-reported roles with education professionals. Focus on Autism and Other Developmental Disabilities, 21(3), Fall 2006, 177 – 189. Strauss, A. & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory. Thousand Oaks, CA: Sage. Sundberg, M. L., & Michael, J. (2001). The value of Skinner’s analysis of verbal behavior for teaching children with autism. Behavior Modification, 25(5), 698-724. Thomas, K. C., Ellis, A. R., McLaurin, C., Daniels, J., & Morrissey, J. P. (2007). Access to care for autism-related services. Journal of Autism & Developmental Disorders, 37(10), 1902- 1912. United States Code Congressional and Administrative News (1975). p 1433. West Publishing; Eagan, MN: Author. EDUCATION FOR AUTISTIC CHILDREN 117 Unumb, L. S. and Unumb, D. R. (2011). Autism and the law: Case, statutes, and materials. Durham, NC: Carolina Academic. Van Bourgodien, M. E., Reichle, N. C. & Schopler, E. (2003). Effects of a model treatment approach on adults with autism. Journal of Autism and Developmental Disorders, 33(2), 131 – 140. Vismara, L. A. and Rogers, S. J. (2008). The Early Start Denver Model: A Case Study of an Innovative Practice. Journal of Early Intervention, 31(1), 91 – 108. Vorsino, M. (2010). Left out and Lagging. McClatchy - Tribune Business News, 12/14/2010. Wingate, M., Kirby, R. S., Pettygrove, S., Cunniff, C., Schulz, E., Ghosh, T…Yeargin-Allsopp, M. (2014). Prevalence of Autism Spectrum disorder among children aged 8 years— Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010. Monitoring and Mortality Weekly Report 2014, 63(2) 1 -121. Wolf, M.M. (1978). Social Validity: the case for subjective measurement or how applied behavior analysis is finding its heart. Journal of Applied Behavior Analysis, 11(2), 203 – 214. Wood, A.W. (2009). Quality, Cost, and Benefit of Applied Behavior Analysis by Providers of Distinct Credentials for Persons with Developmental Disabilities. Retrieved from ProQuest Dissertations and Theses. (UMI Proquest: 3320206) Woodbury-Smith, M. R. & Volkmar, F. R. (2009). Asperger Syndrome. European Adolescent Psychiatry, 18(2), 2 – 11. Wright, P. W. D. & Wright, P. D. (2011). Wrightslaw: Special Education Law, 2 nd Edition. Hartfield, VA: Harbor House Law. EDUCATION FOR AUTISTIC CHILDREN 118 Yell, M. L., & Drasgow, E. (2000). Litigating a free appropriate education: The Lovaas hearings and cases. Journal of Special Education, 33, 205 – 219. Yell, M. L., Katsyiannis, A., Drasgow, E., & Herbst, M. (2003). Developing legally correct and educationally appropriate programs for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18, 182–191. Yell, M. L., Ryan, J. B., Rozalski, M. E., & Katsyiannis, A. (2009). The U.S. Supreme Court and special education: 2005 – 2007. Teaching Exceptional Children, 41(3), 68 – 76. Yin, R.K. (2009). Case study research: Design and methods. Thousand Oaks, CA: Sage. Zablotsky, B., Boswell, K., & Smith, C. (2012). An Evaluation of School Involvement and Satisfaction of Parents of Children with Autism Spectrum Disorders. American Journal on Intellectual and Developmental Disabilities, 117(4), 316 – 330. Zablotsky, B., Bradshaw, C. P., Anderson, C. M. & Law, P. (2014). Risk factors for bullying among children with autism spectrum disorders. Autism, 18(4), 419 - 427. Zirkel, P. (2011). Autism Litigation under the IDEA: A New Meaning of “Disproportionality”? Journal of Special Education Leadership, 24(2), 92 – 103. Zirkel, P. (2005). A primer on special education law. Teaching Exceptional Children, 38(1). Zirkel, P. A. (2002a). The Autism case law: Administrative and judicial rulings. Focus on Autism and Other Developmental Disabilities, 17(2), 84 - 93. Zirkel, P. (2002b). Decisions that have shaped U. S. education. Educational Leadership, –59(4). EDUCATION FOR AUTISTIC CHILDREN 119 Appendix A Parent Instrument  Tell me a little about your child. How old is s/he and how would you describe your child’s functional level?  Does your child qualify for extended school year services? One-to-one services? Extended school day?  When did your child become eligible for DOE services? Have you received services from any other school district? If so, how do services in Mana District compare to the previous district?  Please describe the services your child receives now (prompt: transportation; speech; OT; PT; ABA; social skills training, etc).  Please describe the strengths of the school in educating your child.  Please describe your child’s best educational moment in terms of a time, an incident, a program, or activity.  Please describe the weaknesses of the school in educating your child.  Please describe your child’s worst educational moment in terms of a time, an incident, a program or activity.  Please describe what you would consider an ideal FAPE for your child (prompt: quantity and quality of services/providers; relationship with IEP team; selection of programs; implementation of programs)  Where do you see your child functioning in one year’s time? In three years?  How could your child’s school better serve you?  How could your child’s school better serve him or her? EDUCATION FOR AUTISTIC CHILDREN 120 Appendix B Therapist Instrument  Can you tell me under what circumstances you have come to treat most children receiving your services who have attended DOE schools? (Prompt: due process; additional services; contracted through school)  Tell me more about the services you provide children receiving your care. How would you describe your clients’ functional level?  Do your clients qualify for extended school year services? One-to-one services? Extended school day?  When do your clients typically become eligible for DOE services? Have you provided services to any other school district? If so, how do services in Mana District compare to the previous district?  Please describe the specific ABA approach you provide most clients now.  Please describe the strengths of Mana District in educating your clients. How would you compare Mana’s provision of educational services with other districts?  Please describe one of your client’s best educational “moment” without revealing her or his identity in terms of a time, an incident, a program, or activity.  Please describe the weaknesses of the Mana District in educating your clients.  Please describe one of your client’s worst educational “moment” without revealing her or his identity in terms of a time, an incident, a program or activity.  Please describe what you would consider an ideal FAPE for your clients (prompt: quantity and quality of services/providers; relationship with IEP team; selection of programs; implementation of programs) EDUCATION FOR AUTISTIC CHILDREN 121  Think about one client in particular without revealing her or his identity. Based on that child’s current level of functioning and the level of services the child receives now, where do you see that child functioning in one year’s time? In three years? (prompt: increased social and communicative behaviors; academics; independent life skills)  In this particular client’s case, how could that child’s school better serve the family (prompt: more/better communication; more IEP input; better or more services addressing life skills that would improve functioning at home, etc).  How could the child’s school better serve him or her (prompt: better service providers; more consistency in service providers; more services; better services; safety issues, etc).

Asset Metadata

Creator Edghill, Janet Lynn (author)

Core Title What constitutes a free and appropriate education for autistic children in Hawaii: what do parents think?

Contributor Electronically uploaded by the author (provenance)

School Rossier School of Education

Degree Doctor of Education

Degree Program Education (Leadership)

Publication Date 09/12/2014

Defense Date 05/09/2014

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

Tag autism,Education,FAPE,OAI-PMH Harvest

Format application/pdf (imt)

Language English

Advisor Pascarella, John, III (committee chair), Picus, Lawrence O. (committee member), Sundt, Melora A. (committee member)

Creator Email edghill@usc.edu,janet721@gmail.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c3-475646

Unique identifier UC11286922

Identifier etd-EdghillJan-2923.pdf (filename),usctheses-c3-475646 (legacy record id)

Legacy Identifier etd-EdghillJan-2923.pdf

Dmrecord 475646

Document Type Dissertation

Format application/pdf (imt)

Rights Edghill, Janet Lynn

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

Abstract (if available)

Abstract This qualitative study describes the opinions of parents of autistic students ages 5 through 12 years who attend public schools in Mana District (a pseudonym), Oahu, Hawaii, and Applied Behavior Analysis (ABA) therapists who treat of have treated autistic students in Mana District regarding the provision of a Free and Appropriate Public Education (FAPE). The study sought to determine what factors are most important to parents in the provision of a FAPE, as well as the professional opinion of private therapists of where the schools are succeeding or failing. Seven parents and four therapists were interviewed for their opinions of the public education being provided to their children or clients. Responses were viewed through a Social Validity lens. Key factors that influence satisfaction with a child's FAPE include the level of services, both quantity of services and the intensity at which they are provided, the quality of providers, providing a safe and nurturing environment, open communications, including parents and therapists as part of the Individualized Education Program (IEP) team, and trusting the educators and professionals involved in the child's education. Safety of students emerged as a key concern as did a feeling that not all educators were familiar with autism, affecting the quality of a FAPE.