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Preventing exploitation of people with intellectual and developmental disabilities (I/DD) healthy and unhealthy relationships educational workshops sustaining innovation: healthy relationships matter

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Preventing exploitation of people with intellectual and developmental disabilities (I/DD) healthy and unhealthy relationships educational workshops sustaining innovation: healthy relationships matter

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Content Running head: HEALTHY RELATIONSHIPS MATTER 1
Preventing Exploitation of People with Intellectual and Developmental Disabilities (I/DD)
Healthy and Unhealthy Relationships Educational Workshops
Sustaining Innovation: Healthy Relationships Matter
Sharon Delvisco
Capstone Project Presented in Partial Fulfillment for the Degree
Doctor of Social Work
USC Suzanne Dworak-Peck School of Social Work
University of Southern California
SOWK 722 Professor Brooks
December 2020
Revised 12/1/2020
HEALTHY RELATIONSHIPS MATTER 2
Abstract
The American Association on Social Work and Social Welfare (2018) posits that family
violence is a tragedy with significant consequences. Examination of the Social Work Grand
Challenge to “Build Healthy Relationships to End Violence” Fact Sheet (Barth, et. al., 2020)
reveals that sexual assault is one aspect of this grand challenge. In the United States, every 73
seconds a person is sexually assaulted (RAINN, 2020). The rate of sexual assault for people
with intellectual and developmental disabilities (I/DD) is higher than the rate for people without
disabilities (Shapiro, 2018). This paper provides a description of an implementation ready
sustaining innovation Capstone Project of educational workshops entitled “Healthy Relationships
Matter.” The educational workshops for family members, caregivers, and professionals
supporting people with I/DD are designed to address the implicit bias of the ‘eternal child’ social
norm. The ‘eternal child’ social norm held by family members, caregivers, and professionals
leads to people with I/DD being viewed as ‘eternal children’ and as asexual beings not capable of
engaging in adult relationships (Björnsdóttir & Traustadóttir, 2010; Rohmer & Louvet, 2018;
Starke, et. al., 2016). The educational curriculum prototype (See Appendix A) is designed to
address the practice problem that people with I/DD are not provided with information and
supports about healthy relationships. The prototype will be used as the educational curriculum
for the workshops targeting family members, caregivers, and professional.
Keywords: Family Violence, sexual violence, people with intellectual and developmental
disabilities, healthy vs unhealthy relationships.
HEALTHY RELATIONSHIPS MATTER 3

Introduction
In the United States, sexual assault is a serious, persistent, and life-threatening public
health concern with significant impact upon millions of people (Morgan, et. al., 2018; Wilson &
Webb, 2018). One in three women and one in four men will experience sexual assault which
includes physical contact in their lifetimes (CDC, 2020). The rate of sexual assault for people
with intellectual and developmental disabilities (I/DD) is estimated to be at least four, and as
high as seven times more likely than for people without disabilities (Arizona DD Planning
Council, 2017; Harrell, 2017; Medina-Rico, et. al., 2018; Morgan & Truman, 2017; NCDAV,
2019; Shapiro, 2018). Although sexuality begins at birth and is a lifelong development process,
people with I/DD are discouraged from discussing sexuality issues and concerns (CDC, 2019;
Ditchman, et. al., 2017; Morgan & Truman, 2017). As a result, people with I/DD experience a
lack of access to accurate information about healthy and unhealthy relationship including basic
sexuality, intimacy, and sexual assault (Beddows & Brooks, 2016; Black & Kammes, 2019;
Callus, et. al, 2019; Medina-Rico, et. al., 2018). This increases the likelihood that people with
I/DD will be victimized (Basile, et. al., 2016; CDC, 2019; Ditchman, et. al., 2017; Morgan &
Truman, 2017).
In the United States, 1 out of every 6 women and 1 out of every 33 men experience
sexual assault in their lifetime (CDC, 2020). The US Department of Justice, Bureau of Justice
Statistics indicates that the rate of victimization of people with disabilities is at least 2.5 times
higher than people without disabilities (Harrell, 2017). People with I/DD had the highest
victimization rate of 57.9 per 1,000 persons (Harrell (2017). According to the Office of Victims
of Crime (2020) 60 out of every 1,000 people reporting victimization was a person with a
cognitive (intellectual) disability.
HEALTHY RELATIONSHIPS MATTER 4

The implicit bias of the ‘eternal child’ social norm held by family members, caregivers,
and professionals that people with I/DD supports the view of people with I/DD as ‘eternal
children’ and asexual beings not capable of engaging in adult relationships (Björnsdóttir &
Traustadóttir, 2010; Rohmer & Louvet, 2018; Starke, et. al., 2016). This ‘eternal child’ social
norm contributes to the notion that many people without disabilities think that people with I/DD
are not interested in or do not engage in a sexual life (Gürol, et. al., 2014). This social norm leads
to the practice problem of excluding people with I/DD from sexuality education workshops
(Ditchman, et. al., 2017; Medina-Rico, et. al., 2018; Morgan & Truman, 2017). This translates
into a lack of knowledge among people with intellectual and developmental disabilities about
healthy relationships, personal safety, and sexual self-advocacy (Beddows & Brooks, 2015,
Starke, et. al., 2016). The lack of knowledge and skills further marginalizes people with
intellectual and developmental disabilities and increases the risk of victimization (Turner and
Crane, 2016).
Problem Statement. The rate of sexual assault for people with I/DD has been estimated
to be at least four times and as high as seven times more likely than people without disabilities
(Arizona DD Planning Council, 2017; Harrell, 2017; NCDAV, 2019; Medina-Rico, et. al., 2018;
Morgan & Truman, 2017; Shapiro, 2018). Due to a lack of information about sexuality,
relationships, intimacy and sexual assault, people with I/DD are more likely to be victimized
than people without disabilities (CDC, 2019; Morgan and Truman, 2017).
Supporting Information. In 2014, there were 284,350 victims of sexual assault in the
United States and there was a statistically significant increase to 734,630 victims in 2018
(Morgan & Ouderkerk, 2019). Sexual assault does not discriminate, and the violence occurs
across all socioeconomic groups, races, and cultural/ethic groups (Compass Center, 2019). The
HEALTHY RELATIONSHIPS MATTER 5
impact of sexual assault includes depression, anxiety, substance use, post-traumatic stress
disorder, suicidal ideation, and death (CDC, 2019; RAINN, 2019).
According to Guttmacher Institute (2019), most adolescents (82% females and 84%
males) attending public school received sex education about how to say no to sex and birth
control. There is a lack of research about the rates of participation in sexuality education for
people with I/DD (Barnard-Brak, et. al., 2014). Barnard-Brak, et. al., (2014) analyzed data from
the National Longitudinal Transition Study and reported that students with moderate to profound
I/DD were 16.18% less likely to participate in sex education than students without disabilities.
In addition, approximately 53% of students receiving special education services did not
participate in sex education (Barnard-Brak, et. al., 2014). The data collected on pre and post-
tests (See Appendix H) during the Phase 1 implementation of the Healthy Relationships Matter
Capstone Project shows that only 61% of the family members, caregivers, and professionals and
only 40% of the people with I/DD had previously participated in sex education prior to attending
the educational workshops.
The Stop the Hurt website (stepthehurt.org, 2020) indicates that is it important to
recognize both the positive or healthy aspects (green flags) and the negative or unhealthy aspects
(red flags) of relationships. Healthy relationships are based upon trust, respect, open
communication, boundaries, acceptance, and fun. According to Love is Respect
(loveisrespect.org, 2020) unhealthy relationships are based upon fear, obsession, control,
isolation, mind games, disrespect, ignoring boundaries, strategies to change the other person,
stifles growth, and consent.
Causation. People with I/DD are not recognized as sexual beings due to the implicit bias
of the ‘eternal child’ social norm held by family members, caregivers, and professionals
HEALTHY RELATIONSHIPS MATTER 6

(Björnsdóttir & Traustadóttir, 2010; Gürol, et. al., 2014; Rohmer & Louvet, 2018). As a result of
being viewed as ‘eternal children,’ people with disabilities are excluded from access to sexual
health knowledge, information about healthy and unhealthy relationships, and do not learn to
self-advocate for their rights (Szydlowski, 2016). People with I/DD are just like people without
disabilities and have the same need for love, affection, and companionship (AAIDD, 2013;
Szydlowski, 2016). People with I/DD should have access to the necessary knowledge to develop
healthy, safe relationships to increase their self-protective capacity skills, and avoid risky
situations that could lead to sexual assault and exploitation (AAIDD, 2013; Callus, et. al., 2019;
Lam, et. al., 2019; Medina-Rico, et. al., 2018).
Barriers within the disability services system related to the ‘eternal child’ social norm
include a bias of overprotection, lack of recognition of symptoms of sexual assault, and
attributing reports of assault to be disability related symptoms; for example, stating that the
victim is confused, not credible or storytelling/lying (Browne, et. al., 2016; Fitzsimons, 2009).
The attitudinal barriers created by the ‘eternal child’ social norm are critical when addressing the
practice problem that people with I/DD are more vulnerable to sexual assault. Attitudinal
barriers are based upon myths, stereotypes, and negative views about people with I/DD which
contribute to biases (Browne, et. al., 2016; English, et. al., 2018; Fitzsimons, 2009: Northway,
2016; Rohmer & Louvet, 2018). The implicit bias of the ‘eternal child’ social norm that holds
this practice problem in place impacts not only people with I/DD but their family members,
caregivers, and professionals who provide services (Callus, et. al., 2018; Rohmer & Louvet,
2018).
HEALTHY RELATIONSHIPS MATTER 7

Identification and Significance of the Practice Problem
Mental age is a concept or construct used to compare the level of intelligence based upon
performance of functional skills a person with a disability has as compared to others without
disabilities that are the same age (Encyclopedia Britannica, 1998). So, a person who is
chronologically 25 years of age and has an I/DD might be described as having a mental age of 2
years old or 10 years old based upon functioning levels. People with I/DD are not viewed as
adults and instead as less than capable based upon the labels associated with mental age.
Therefore, they are perceived and treated as ‘eternal children’ because professionals use the
concept of ‘mental age’ to describe the intelligence and functioning level of someone with I/DD
(Starke, et. al., 2016). One aspect of the identified practice problem includes the issues
associated with the continued use of ‘mental age’ concept about the skills and abilities of people
with I/DD. The use of concepts based upon mental age by professionals when discussing or
describing people with I/DD perpetuates the social norm of the ‘eternal child’. Just as all
humans do, people with I/DD share the same need for affection and intimate relationships (Lam,
et. al., 2019). Unfortunately, because people with I/DD are viewed as ‘eternal children’ by
family members, caregivers, and professionals, they are often perceived as either asexual, not
capable of, or as not interested in loving or fulfilling intimate relationships and their rights
related to sexuality are often impeded or denied (AAIDD, 2019).
Merriam-Webster (2020) defines attitude as a mental position, feeling or emotion toward
a fact or a state. Breau, et. al., (2019) expanded this definition to include tendencies to like or
dislike objects, issues, specific individuals, or groups. The goal of the Healthy Relationships
Matter Capstone Project is to change attitudes of family members, caregivers, and professionals
related to the ‘eternal child’ social norm. To create change in attitudes or biases the person must
HEALTHY RELATIONSHIPS MATTER 8

receive new information, including continuing education workshops (Breau, 2019). Changes in
implicit biases associated with the ‘eternal child’ social norm held will occur when the individual
workshop participant considers the new information being presented and compares it to
previously held beliefs. This comparison of information will lead to a change in implicit bias
held by family members, caregivers, and professionals supporting people with I/DD.
Social Work Grand Challenge
The identified practice problem that family members, caregivers, and professionals do
not support participation in sex ed for people with I/DD falls under the Social Work Grand
Challenge to Build Healthy Relationships to End Violence (Barth, et. al., 2020). The social
norm with significant impact on the practice problem is people with intellectual and
developmental disabilities (I/DD) are viewed as ‘eternal children’ and not likely to be supported
to have access to education and information about healthy relationships and having a sexual life
(Gürol, et. al, 2014). This social norm impacts access to educational opportunities for people
with I/DD (Gonzálvez, 2018; Gürol, 2014). Therefore, people with I/DD are excluded from
sexual education courses which then leads to a lack of knowledge and skills about safety and
sexual self-advocacy (Beddows & Brooks, 2015). The lack of knowledge and skills further
marginalizes people with intellectual and developmental disabilities and increases the risk of
victimization (CDC, 2019; Morgan & Truman, 2017; Shapiro, 2019; Turner & Crane, 2016).
According to the Center for Disease Control (2020) it is estimated that two in five women
victims (39%) of rape have a disability.
Strategies to Address the Grand Challenge to Build Healthy Relationships to Stop Violence
In order to address the Social Work Grand Challenge to Build Healthy Relationships to
Stop Violence, the CDC recommends emphasis on prevention (Macy, 2018) with multiple
HEALTHY RELATIONSHIPS MATTER 9

strategies: teach safe and healthy relationship skills, engage influential adults and peers, disrupt
the developmental pathways to violence, create protective environments, strengthen economic
support for families, support survivors to increase safety and lessen harms (Niolon, et. al., 2017).
Summary of Capstone Program
The following is a description of the key components of the Healthy Relationships Matter
sustaining innovation capstone project (See Appendix A and Appendix F) which is
implementation ready and designed as a concept to address the Social Work Grand Challenge to
Stop Family Violence (AASWSW, 2016). The social problem is the rate of sexual assault for
people with I/DD has been estimated to be at least four times and as high as seven times more
likely than people without disabilities (Arizona DD Planning Council, 2017; Harrell, 2017;
Medina-Rico, et. al., 2018; Morgan & Truman, 2017; Shapiro, 2018). Due to the practice
problem that people with I/DD have a lack of information about sexuality, relationships,
intimacy and sexual assault, they are more likely to be victimized than people without disabilities
(CDC, 2019; Morgan & Truman, 2017).
Innovative Solution
The mission of the Healthy Relationships Matter sustaining innovation capstone project
is to provide a healthy foundation of knowledge about sexuality for people with intellectual and
developmental disabilities throughout the state of Louisiana while addressing the identified
practice problem. The prototype (Appendix A) is a training curriculum for family members,
caregivers, and professionals to address the ‘eternal child’ social norm. The Healthy
Relationship Matters capstone project will provide a series of educational workshops in each of
the ten (10) developmental disability services system regions of Louisiana (See Appendix F).
Two workshops will be provided at each location.
HEALTHY RELATIONSHIPS MATTER 10

Expected Outputs
Phase 1 (pilot) Phase 2 Phase 3
2 hour 150 participants 150 participants 150 participants
Workshops

Retreat Style 80 participants 80 participants
Training

Train the 30 participants
Trainers

The implementation ready solution is a sustaining innovation with several components
(See Appendix F). One component is the educational workshops targeting people with I/DD. A
second component, which is the curriculum prototype (See Appendix A) is an educational
workshop for family members, caregivers, and professionals providing services of people with
I/DD. The mission of the Healthy Relationships Matter sustaining innovation is to provide a
foundation of knowledge about sexuality and safety for people with I/DD and to address the
identified practice problem and provide family members and caregivers with information to
address the implicit bias associated with the ‘eternal child’ social norm (See Appendix B and
Appendix C).
The expected outcomes outlined in Logic Model (See Appendix C) are people with I/DD
will increase their knowledge about healthy and unhealthy relationships. Family members,
caregivers, and professionals will increase their awareness of their implicit bias attitudinal
barriers that people with I/DD are viewed as ‘eternal children’ and not as sexual beings
(Björnsdóttir, and Traustadóttir, 2010; Black and Kammes, 2019; Callus, et. al., 2018; CDC,
2019; Goyal, 2017; Lam, et. al., 2019). The family members and caregivers will also increase
their skills and knowledge about strategies to support healthy relationships and to respond to
HEALTHY RELATIONSHIPS MATTER 11

questions and concerns about healthy relationships and sexuality. As the Logic Model (See
Appendix C) indicates, the long-term outcome of the workshop series is to increase the
protective risk capacity of people with I/DD and decrease the impact of the ‘eternal child’
implicit bias held by family members, caregivers and professionals and decrease the rate of
sexual assault of people with I/DD.
The initiative implementation structure will be a three-phase process which is outlined in
the project graphic representation (See Appendix F) which includes the components of the
capstone project. During the Phase 1 pilot, the educational workshops curriculum prototype (See
Appendix A) was developed and implemented in a two-pronged approach. One workshop
targeted people with I/DD and one workshop using prototype curriculum (See Appendix A)
targeted family members, caregivers and professionals providing services. In Phase 2 additional
activities will include developing and implementing a retreat style educational event for people
with I/DD (See Appendix F). Phase 3 additional activities will include developing and
implementing a train the trainer educational event for people with I/DD (See Appendix F).
The Phase 1 pilot included two trainers for each of the educational workshops. The
trainers were Sharon Delvisco, RSW, MSW, USC doctoral candidate and Rebecca Mandal-
Blasio, PsyD, Clinical Psychologist and a Board-Certified Behavior Analyst (BCBA). During
the Phase 1 pilot, the project provided the two-hour educational workshops (total of 20) in each
of the ten regions of the state. There was a total of 350 family member, caregiver, and
professional participants during the Phase 1 pilot using the prototype curriculum. A total of 150
people with I/DD completed the educational workshops in the Phase 1 pilot. The scope of Phase
2 includes the continuation of the Phase 1 educational workshops using the prototype to address
the practice problem and the addition of four (4) retreat style training events with 20 participants
HEALTHY RELATIONSHIPS MATTER 12

or a total of 80 people with I/DD. The scope of Phase 3 includes continuation of both Phase 1
(addressing the practice problem) and Phase 2 workshops and the addition of three (3) train the
trainer events with 10 participants at each event for a total of 30 people with I/DD trained to be
trainers for the workshops. At this point in the implementation process, the project could
become scalable and available for replication in other states.
Purpose. The purpose of the proposed sustaining innovation Healthy Relationships
Matter Capstone Project and the prototype (See Appendix A) is to decrease the impact of the
‘eternal child’ social norm implicit bias held by family members, caregivers, and professionals as
outlined in Logic Model (See Appendix C).
Target Population & Actors. The actors for this proposed intervention are adults with
intellectual and developmental disabilities (I/DD), their family members, caregivers, and the
professionals that provide services. The target population is family members, caregivers, and
professionals for the prototype implementation to address the practice problem. Other
stakeholders include the Louisiana Department of Health Office for Citizens with Developmental
Disabilities, Office of Public Health, Office of Aging and Adult Services, Families Helping
Families Resource Centers, and the Regional Developmental Disabilities Services Local
Governing Entities. The beneficiaries of the proposed workshops are adults with I/DD. The
users of the curriculum prototype for the educational workshops will be family members,
caregivers, and professionals. By targeting these key actors, the intervention will attempt to
subvert the social norm that people with I/DD are ‘eternal children’ and therefore are sexual
beings in need of education about healthy relationships.
Stakeholder Input. Stakeholder perspectives have influenced the development of the
content of the Capstone project curriculum prototype (See Appendix A) for the educational
HEALTHY RELATIONSHIPS MATTER 13

workshops. A Needs Assessment was conducted to gather information about the topics people
with I/DD and their family members, caregivers, and professionals felt were most important (See
Appendix D). In addition, 65 interviews (See Appendix E) were conducted with stakeholders.
The interviews provided information from family members, caregivers, professionals, people
with intellectual and developmental disabilities, FBI special agents, Sexuality Assault Nurse
Examiner, and representatives from the Arc of Louisiana, the Louisiana Developmental
Disabilities Council, the Louisiana Office of Public Health, the Louisiana Office for Citizens
with Developmental Disabilities, representatives from Developmental Disabilities Services of the
Local Governing Entities, and other professionals supporting people with I/DD.
Conceptual Framework
Satell (2017) created the Innovation Matrix to help people implementing innovative
strategies to solve social problems. Most innovation occurs using a sustaining innovation
strategy, much like the Healthy Relationships Matter Capstone Project. In most situations social
work innovators are attempting to address a complex social problem by improving and
expanding upon existing solutions (Satell, 2017).
The Healthy Relationships Matter sustaining innovation capstone project will address the
social problem that people with intellectual and developmental disabilities (I/DD) are more
vulnerable to sexual assault (Demmitt, 2019; Disability Justice; 2019; NCDAV, 2019; Shapiro,
2018; Wilson & Webb, 2018) In addition, the Healthy Relationships Matter sustaining
innovation will address the practice problem that people with I/DD do not receive support and
education to recognize healthy and unhealthy relationships from their family members,
caregivers, and the professionals that provide support to them. This project is an implementation
ready sustaining innovation that will improve upon existing strategies to address the practice
HEALTHY RELATIONSHIPS MATTER 14

problem identified. The project is innovative because the prototype will be used to train and
educate family members, caregivers, and professionals at the same time and at the same locations
while educating people with intellectual and developmental disabilities. The innovation will be a
series of sexual education workshops using the curriculum prototype focused on decreasing the
impact of the ‘eternal child’ social norm.
Theory of Change
The following Theory of Change (See Appendix B) and Logic Model (See Appendix C)
demonstrate the plan to address the priority of defining goals and proof of concept as a path to
address this practice problem. The decision was made to address the practice problem with the
educational workshops (See Appendix B) because people with I/DD are at greater risk of sexual
victimization as a result of some key factors: lack of sexuality education, high level of
dependence on caregivers, emotional and social insecurities, and impaired cognitive functioning
(Lutzker, et. al., 2016). The intervention will be a series of educational workshops using the
prototype curriculum (See Appendix A). The intervention will provide education to people with
I/DD, their family members/caregivers and professionals that provide support services.
Entry Point. The implementation ready sustaining innovation capstone project Healthy
Relationships Matter educational workshop intervention will address the problem of people with
(I/DD) being more vulnerable to sexual assault (Shapiro, 2018). The educational workshops
will be funded by the Louisiana Developmental Disabilities Council through a contract with
Team Dynamics, LLC. A market analysis (comparative analysis) demonstrated there were no
other sexual education curriculums being offered at no fee for family members, caregivers, and
professionals of people with I/DD in Louisiana. The are other options available in the United
HEALTHY RELATIONSHIPS MATTER 15

States which require registration fees for family members, caregivers, and professionals. These
options also require expenses for travel to other locations.
Steps to Bring about Change. To bring about change as it relates to the identified
practice problem, it will be critical that people participating in the workshops do not fear
judgement (Lam, et al, 2019; McLaughlin, et al, 2010). The Healthy Relationships Matter
education workshops will include basic knowledge about healthy sexual development and the
process of sexual maturation (Gonzálvez, et al, 2018; McLaughlin, et. al., 2010; Medina-Rico, et.
al., 2018). The sexual education workshops content will provide information about skills
necessary for the development of social connections, positive self-concept, intimacy, and
belonging (Gonzálvez, et. al., 2018; McLaughlin, et. al., 2010; Medina-Rico, et. al., 2018). The
content of the Healthy Relationships Matter education workshops is based upon the 2020
National Sexuality Education Standards published by the Future of Sex Ed Initiative, the 2019
CDC recommendations and the United Nations Revised International Technical Guidance on
Sexuality Education Tool (UNFPA, 2018).
Measurable Effects and Wider Benefits. Participants in the Healthy Relationships
Matter workshops will increase understanding of rights, responsibilities, and basic anatomy.
Participants will increase understanding of the basics of gender, orientation, safety, and
relationships. Participants will be able to recall effective ways to answer/ask questions about
sexuality and respond to sexual advances and/or respond to behaviors. In addition, for the
workshops targeting family members and caregivers, participants will increase knowledge about
techniques to answer questions and provide support related to healthy sexual development of
people with I/DD and address the implicit bias related to ‘eternal child’ social norm.
HEALTHY RELATIONSHIPS MATTER 16

Long Term Goal. The long-term goal for this intervention is risk reduction for people
with I/DD as it relates to sexual violence. In addition, the long-term goal for workshops
targeting family members, caregivers, and professionals is to increase their ability to recognize
the signs and symptoms of sexual assault for their family member with I/DD (See Appendix C).
Project Structure, Methodology, and Action Components
Methodology and Methodological Tools
Evaluation/Research Question. Does participation in the Healthy Relationships Matter
educational workshops decrease ‘eternal child’ implicit bias of family members, caregivers, and
professionals serving people with I/DD? Does participation in the Healthy Relationships Matter
educational workshops increase knowledge about healthy relationships for people with I/DD?
Identify Research Design. The Healthy Relationships Matter initiative is planned as a
pre-experimental design. Each participant with I/DD will be administered a pre-test, participate
in the educational workshop and then be administered a post-test (O X O). There will not be a
control group. The pre- and post-tests will have the same questions in same chronological order
and have picture cues for those participants with I/DD that need assistance understanding written
words (See Appendix G). The same pre-/post-tests will be administered to family members,
caregivers and professionals. In addition, the Facts and Myths worksheet will be administered
prior to and upon completion of the educational workshop to family members, caregivers and
professionals. All seven threats to internal validity will not be ruled out as having impact on the
results of this project.
Sampling. This will be a non-random convenience sample of people registering to attend
the workshops scheduled in each of the ten (10) developmental disabilities services regions in
Louisiana.
HEALTHY RELATIONSHIPS MATTER 17

Methods of Assessment
Measures. The family members, caregivers and professionals that register and attend the
educational workshop will be administered the Fact and Myth worksheet and the pre-/post-tests.
An attempt to measure for the impact of the ‘eternal child’ implicit bias using the Facts and
Myths worksheet developed based upon the experiences project staff have had during 30 years of
work with people with I/DD, their family members, and professionals providing services.
Data Analysis. There will be quantitative demographic data collected, and reported as
descriptive statistics about participants including age (ratio measurement), gender (ratio
measurement), level of educational attainment (nominal measurement), parish of residence
(ratio measurement), self-reported exposure to pictures of sexual nature that they did not want to
see (frequency measurement) and previous or lack of previous participation in sexuality
education (frequency measurement). Descriptive statistics will be used to analyze the frequencies
and percentages for the facts and myths worksheets. Inferential statistics will be used to
determine if there are statistically significant differences between facts and myths at pre-test to
post-test.
Leadership Strategies. My results from the Gallup Clinton Strengths Assessment
indicated the top four descriptors as achiever, relator, learner and harmony. This matches my
leadership style and skill set. I am the oldest child in my family, and I was always responsible
for my three siblings. As a result, I am a great negotiator. As an achiever, I have a great deal of
stamina while working. I work hard and I take great satisfaction in being busy and productive. I
like getting things done and I am motivated to be successful. I like doing a good job and I do not
need much positive reinforcement because a job well done is enough of a reward. As a relator, I
enjoy working with others to achieve a goal. I enjoy teamwork. One of the drawbacks is that I
HEALTHY RELATIONSHIPS MATTER 18

am brutally honest and sometimes abrupt in the interest of getting to the result. I work well with
others because I accept people for who they are and value their unique quirks and I can recognize
and support people around their strengths. I have the capacity to work with the most difficult
people and find their strengths so they can contribute to the goals of the team and achieving
outcomes. As a learner I am committed to continuous self-improvement, I love to learn. I value
knowledge and see information as a gateway to adventures and learning. As far as harmony, I
negotiate for consensus and I do not like conflict, although I recognize that differences in thought
lead to innovation and change. It is easy for me to see everyone’s point of view and get people to
agree. The vision I have for myself as a leader matches a quote from Simon Banks: “You are not
a leader until you have produced another leader, who can produce another leader.”
Financial Plan Summary. This sustaining innovation will be implemented in three (3)
phases (See Appendix G). The Phase 1 Pilot allowed for the development and implementation of
the educational workshops using the prototype targeting family members, caregivers, and the
professionals that provide services to people with I/DD. Phase 2 will focus on continuation of
Phase 1 activities and the additional activity of development and implementation of a six-topic
three-day retreat style educational event for people with I/DD. The plan is to offer four (4) of
these retreat style events. Phase 2 activities have received funding from the La DD Council.
Phase 3 will focus on the additional activity of the development and implementation of a train
the trainer component for people with I/DD. We plan to offer three (3) of the train the trainer
events.
Here is the Financial Plan Summary:

HEALTHY RELATIONSHIPS MATTER 19

Phase 1 Phase 2 Phase 3
Revenue $26,675.00 $76,959.20 $120,656.45
Expenses
Personnel $14,000.00 $32,000.00 $50,000.00
Other $12,675.00 $44,959.20 $70,656.45
Expenses
Surplus 0 0 0
Communication Product and Strategies
An awareness campaign generating empathy for survivors and prevention of sexual
assault is necessary for this proposed sustaining innovation capstone project entitled Healthy
Relationships Matter. The campaign would increase awareness about the ‘eternal child’ social
norm which holds the identified practice problem in place. Due to nature of the implicit bias
associated with the ‘eternal child’ social norm, the campaign needs to address the issues of the
‘eternal child’ implicit bias held by family members, caregivers, and professionals (Black &
Kammes, 2019; CDC, 2019; Lam, et. al., 2019). The ‘eternal child’ social norm perpetuates the
myth that people with I/DD are asexual beings because they never really mature (Björnsdóttir &
Traustadóttir, 2010; Rohmer & Louvet, 2018).
Campaign Description. The campaign will include short form videos on social media
platforms. As Muninger, et. al., (2019) indicated, the use of social media is an effective
mechanism to highlight proposed social work innovations. It is important to garner proactive
support and involvement from people impacted by the practice problem for campaigns
(Muninger, et. al., 2019; Stanley, et. al., 2017). To effectively garner support for the campaign,
the target audience must be included in the development and dissemination of the awareness
campaign (Muninger, et. al., 2019; Stanley, et. al., 2017, Waters, 2017).
HEALTHY RELATIONSHIPS MATTER 20

In addition, the proposed campaign will include posts to increase awareness about the
problem and proposed solution on a blog, on Linked In, on Facebook, and on Twitter. There
have already been three presentations at national conferences about the Healthy Relationships
Matter Initiative. Presentations were accepted and provided at the TASH Conference, the
National American Association on Intellectual and Developmental Disabilities, and the
Louisiana State Chapter of the American Association on Intellectual and Developmental
Disabilities Annual Conference. Proposals will be submitted for presentations at the American
Professional Society on the Abuse of Children, the National Association of the Dually
Diagnosed, the National Council on Developmental Disabilities, and the National Convention for
the Arc of the United States. The presentations provide audience members with an overview of
the problem and Capstone Project of educational workshops targeting people with I/DD and their
family members, caregivers, and professionals. In addition to the description of problem and
social norm, the presentations include information about the curriculum content, the
demographics of attendees, and results of pre/post tests and evaluations.
Proposed Campaign Overview. The message for the proposed campaign is that people
with intellectual and developmental disabilities are at increased risk of becoming victims of
sexual assault. The goal of the message is to increase awareness of the increased levels of risk
and generate empathy and concern for their well-being. Hopefully, this will empower people
with intellectual and developmental disabilities, their family members, caregivers, and
professionals to seek out educational opportunities which provide information about prevention
and increase self-protective skills.
One of the goals is to provide a train the trainer component of the sustaining innovation
for people with I/DD. The co-trainers of the educational workshops will be added to social
HEALTHY RELATIONSHIPS MATTER 21

media campaigns and the short form videos to share the message that education is key to the
prevention of sexual assault of people with intellectual and developmental disabilities. The
campaign will include social media platforms that will be shared by key stakeholder groups
including the Louisiana Developmental Disabilities Council, The Advocacy Center of Louisiana,
the ten Local Governing Entities for Developmental Disability Services, and the network of
Families Helping Families Resource Centers in Louisiana.
It is important to monitor and evaluate a campaign (Davis, 2012; Krizanova, et. al., 2019;
Lath, 2018). Monitoring and evaluating the campaign will determine its impact (Davis, 2012;
Krizanova, 2019; Lath, 2018; NCVO, 2020; Waters, 2017). According to the National Council
for Voluntary Organizations or NCVO (2020) some key considerations when evaluating
effectiveness of campaigns include establishing what is working well and what is not working
and needs to be improved. The initial step to measure success of a campaign is determining the
goal and clear purpose (NCVO, 2020). A successful campaign will be inspiring, targeted,
impactful and focused (NCVO, 2020).
The success of the proposed social media awareness campaign for the Healthy
Relationships Matter educational workshops will be measured using several metrics. One of the
goals will be to increase the number of followers for the campaign on social media. There is a
plan to measure reactions to posts to determine the reach of the campaign (Lath, 2018). A
baseline will be determined to measure changes in reach (Davis, 2012). The metrics that will be
monitored and measured include number of followers, number of shares, referral traffic from the
shares, and click through rates (Lath, 2018). As the number of followers increase the campaign
will have more shares and reach. The more the followers engage and react to the social media
posts the more visible the campaign becomes (Lath, 2018). Strategies that do not show an
HEALTHY RELATIONSHIPS MATTER 22

increase in the measurement metrics will be reviewed, refined and revised (Davis, 2012; Salimi,
et. al, 2019).
Consideration of Ethical Concerns and Possible Negative Consequences of the Project
Ethical Considerations. There are no ethical considerations related to the sample
because all participants will voluntarily register to attend the educational workshops. All
participants will be 18 or older. If someone discloses assault or is triggered by a discussion
during the educational workshops, a psychologist will be present to meet with them privately to
discuss options and available support services.
Possible Negative Consequences of Project. A possible negative consequence of
participation in the Healthy Relationships Matter educational workshops is people that have
experienced sexual assault could be triggered. This could lead to distress (SSAIC, 2020).
Triggers set off memories from preciously experienced traumatic events (SSAIC, 2020). If
someone discloses assault or is triggered by a discussion during the educational workshops, a
psychologist will be present to meet with them privately to discuss options and available support
services.
Conclusion, Actions, and Implications
In conclusion, there were 350 family member, caregivers, and professional participants of
the pilot phase of the Healthy Relationships Matter educational workshops using the prototype
curriculum (Appendix A). When examining the Proctor, et. al., (2011) implementation outcomes
of acceptability, appropriateness and penetration and feasibility of the innovation and a
comparison to the results of the evaluations completed by participants indicates the sustaining
innovation is implementation ready and that the Healthy Relationships Matter educational
workshops are proof of a concept that is effective. Evaluation results indicate that 89% of
HEALTHY RELATIONSHIPS MATTER 23

attendees strongly agree that the topic is informative and valuable; 81% strongly agree that the
materials are supportive and easily utilized; and 82% strongly agree that they will share the
information learned. Comments from participants include: very helpful training, very
informative and helpful, really enjoyed the training, the best part was body parts, liked learning
things I didn’t know, liked frank discussions, liked discussing romance, liked learning different
genders, liked learning how to have conversations about sex stuff, better outlook on how to
respect and educate about porn and STIs, best part was stories and sharing, and I am tired of
being ignored.
As the efforts of this capstone project continue and are moved forward into the second
phase of implementation, there will be more focus on addressing the implicit bias issues
associated with family members, caregivers, and professionals. Efforts will continue to address
and reduce the impact of the ‘eternal child’ social norm embraced by the family members and
caregivers which hold the belief in place that their adult family member with a I/DD is childlike
and therefore asexual (Black & Kammes, 2019; CDC, 2019; Lam, et al., 2019). Using the
curriculum prototype for the educational workshops, we seek to dismantle the social norm by
focusing on the idea that sexuality is a natural part of the human experience beginning at birth
and continuing throughout one’s life (Medina-Rico, et. al., 2017).

HEALTHY RELATIONSHIPS MATTER 24

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Sutton, R. I., (2007), The No Asshole Rule: Building a Civilized Workplace and Surviving One
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Szydlowski, M.B. (2016). Sexual Health Education for Young People with Disabilities –
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people-with-disabilities-parentsguardians.pdf
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Tamas, D., Brkic Jovanovic, N., Rajic, M., Ignjatovic, V.B., and Prkosovacki, B.P. (2019).
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and-values
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HEALTHY RELATIONSHIPS MATTER 38

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Appendix A
Prototype: Curriculum for Family Members and Caregivers

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Appendix B
Theory of Change
I want to clarify my priorities by defining my goals and path to reach them (DIY: Practical Tools
to Trigger & Support Social Intervention) retrieved September 26, 2019 from
https://diytoolkit.org/tools/theory-of-change/.
Question Explanation Justification
To be addressed Description Why did I make this choice?
Social Problem
What is the
problem you are
trying to solve?
The problem is people with intellectual and
developmental disabilities (I/DD) are more
vulnerable to sexual assault (Shapiro, 2018).
According to the Rape, Abuse & Incest National
Network (RAINN) website someone is sexually
assaulted every 72 seconds in the United States. People
with I/DD are more at risk for being victimized due to
several factors including: lack of sex ed, dependence on
caregivers, emotional and social insecurities, and
impaired cognitive functioning (Lutzker, et al, 2016).
83% of women with intellectual disabilities are
sexually assaulted in their lifetimes (Disability Justice,
2019).
Key Assumptions
for identification
of problem
The intervention will have desired impact of
reducing the number of people with I/DD
who are victimized by sexual predators.
The intervention will provide education to
people with I/DD, their family
members/caregivers and professionals that
provide support services.
The intervention will increase the knowledge
of participants about exploitation.
The norms that will be addressed by the
intervention is people with I/DD are viewed
eternal children.
People with I/DD need to have information
about sexuality and relationships so they can
protect themselves and provided in a way that
is non-judgmental.
People want and need to know about
sexuality, relationships and intimacy.
To meet the design criteria, it is critical to provide a
learning atmosphere in which people do not fear
judgement (McLaughlin, Topper, & Lindert, 2010;
Lam, et al, 2019). The curriculum to provide people
with information about healthy relationships and
sexuality needs to provide a base of knowledge about
healthy sexual development, the process of sexual
maturation and increasing self-protective capacity
(McLaughlin, Topper, & Lindert, 2010; Gonzálvez, et
al, 2018; Medina-Rico, et al, 2018). The content should
include skills necessary for the development of social
connections, positive self-concept, intimacy, and
belonging (McLaughlin, Topper, & Lindert, 2010;
Gonzálvez, et al, 2018; Medina-Rico, et al, 2018).
Actors
Who is your key
audience?
Who will use the
intervention?
Who are the
beneficiaries of
intervention?
The beneficiaries are people with
developmental and intellectual disabilities.
The audience and users of the intervention
include caregivers/family members of people
with intellectual and developmental
disabilities, professionals providing services
to people with intellectual and developmental
disabilities (I/DD) and people with I/DD.
People with I/DD are more likely to be victims of
sexual assault than people without disabilities (Shapiro,
2018). People want to know about sexuality,
relationships and intimacy (Lam, et al, 2019;
McLaughlin, et. al., 2010). Attitudinal barriers are
based upon myths, stereotypes and negative views
about people with I/DD which contribute to biases held
by family members and caregivers (Browne, et. al.,
2016; English, et. al., 2018; Fitzsimons, 2009:
Northway, 2016; Rohmer & Louvet, 2018). The
implicit bias of the ‘eternal child’ social norm that
holds this problem in place impacts not only people
with I/DD but their family members, caregivers and
professionals who provide services (Callus, et. al.,
2018; Rohmer & Louvet, 2018).
HEALTHY RELATIONSHIPS MATTER 58

Key Assumptions
for identification
of actors
When the intervention is implemented it may
challenge actors and entities that believe the
‘eternal child’ myths about people with I/DD
and sexuality.
Attitudinal barriers are based upon myths, stereotypes
and negative views about people with I/DD which
contribute to biases held by family members and
caregivers (Browne, et. al., 2016; English, et. al., 2018;
Fitzsimons, 2009: Northway, 2016; Rohmer & Louvet,
2018). The implicit bias of the ‘eternal child’ social
norm that holds this problem in place impacts not only
people with I/DD but their family members, caregivers
and professionals who provide services (Callus, et. al.,
2018; Rohmer & Louvet, 2018).
What is your
entry point to
reaching your
audience?
The Developmental
Disabilities Service
System
One workshop in each region of the state (10)
annually targeting people with I/DD. One
workshop in each region of the state (10)
annually targeting parents/caregivers. The
“Healthy Relationships Matter’
intervention will address the problem of
people with intellectual and developmental
disabilities (I/DD) being more vulnerable to
sexual assault (Shapiro, 2018). This training
will be funded by the Louisiana
Developmental Disabilities Council.
People with disabilities have the right to learn sexual
self-advocacy without fear of judgement or
condemnation while acquiring skills to make informed
choices and acquire accurate information on the subject
(McLaughlin, Topper, & Lindert, 2010; Lam, et al,
2019). People with intellectual and developmental
disabilities (I/DD) need to have a healthy foundation of
knowledge about sexual development and maturation
as a basis for promoting social connections, a sense of
belonging, a positive self-concept and establishing
intimacy (McLaughlin, Topper, & Lindert, 2010;
Gonzálvez, et al, 2018; Medina-Rico, et al, 2018). The
State of Louisiana does not require or mandate
sexuality education
(http://legis.la.gov/Legis/law.aspx?d=80423) and if
offered the curriculum should be fact-based abstinence
only information and prohibits the inclusion of
information about homosexuality. School districts are
allowed to make the decision about the provision of sex
ed information as a part of an established biology,
science or physical education course. Sex ed classes
are prohibited in grades K – 6 except in Orleans Parish
(county). If offered, parents can opt out of their child
participating and the few school districts that offer sex
ed do not include people with I/DD.
Key Assumptions
for entry point
People will attend the workshops.
The workshops will increase their knowledge
and awareness. To meet the design criteria
for this intervention the principles of adult
learning theory will be used (Rutgers Online,
2019). There are three learning styles and all
3 (visual, auditory, and kinesthetic) will be
incorporated. Storytelling and visual aids
will be incorporated as well to address the
needs of adult learners in target audience.
People have different and a preference for the style of
learning which influences retention of information in a
positive way (Lisle, 2007). Focusing on the best
learning style for everyone enhancing learning process
and improves area of weakness (Lisle, 2007).
What steps are
needed to bring
about the change?
As a result of participation in the educational
workshops people with I/DD will recognize
abusive relationships and situations leading to
exploitation and avoid them. As a result of
participation in the educational workshops,
people with I/DD will recognize and the signs
and symptoms of abuse and avoid them. As a
result of participation in the educational
workshops if victimized, they will report.
It is critical to provide a learning atmosphere in which
people do not fear judgement (McLaughlin, Topper, &
Lindert, 2010; Lam, et al, 2019). The curriculum needs
to provide a base of knowledge about consent,
exploitation, healthy sexual development and the
process of sexual maturation (McLaughlin, Topper, &
Lindert, 2010; Gonzálvez, et al, 2018; Medina-Rico, et
al, 2018). The content should include skills necessary
for the development of social connections, positive
HEALTHY RELATIONSHIPS MATTER 59

self-concept, intimacy, and belonging (McLaughlin,
Topper, & Lindert, 2010; Gonzálvez, et al, 2018;
Medina-Rico, et al, 2018).
Key Assumptions
for steps to bring
about change
People will attend the workshops.
The workshops will increase their knowledge
and awareness.
A pre-test will be administered prior to participation in
the educational workshop and a post-test will be
administered following the educational workshop. Pre
and Post-test scores will be compared to measure
differences in knowledge.
What are
measurable effects
of the
intervention?
The desired impact includes reducing the
number of people with I/DD who are
victimized. This intervention will provide
education to people with I/DD, their family
members/caregivers and professionals that
provide support services. Another desired
impact is to increase the knowledge of
participants about consent and exploitation.
A pre-test will be administered prior to participation in
the educational workshop and a post-test will be
administered following the educational workshop. Pre
and Post-test scores will be compared to measure
differences in knowledge.
Key Assumptions
for measurable
effects
People with I/DD will attend the workshops.
Family members and caregivers will attend
the workshops.
Pre/Post-tests will measure change in
knowledge.
Due to a lack of information about sexuality,
relationships, intimacy and sexual assault, people with
disabilities and symptoms associated with having an
intellectual or developmental disability (I/DD) are more
likely to be victimized than people without disabilities
(CDC, 2019; Morgan and Truman, 2017). Therefore,
access to information about healthy relationships and
sexuality will create change in eternal child implicit
bias held by family members and caregivers and
increase protective capacity of people with I/DD.
What are the
wider benefits of
your work?
A curriculum designed to promote sexuality
education without judgement based on the
National Sexuality Education Standards, the
Needs Assessment, and the result of the
interviews will increase knowledge of family
members and caregivers and increase self-
protective capacity for people with I/DD.
These approaches are based upon the research
including the National Sexuality Education Standards
(2012), the CDC (2019) recommendations, and The
Revised International Technical Guidance on Sexuality
Education Tool (2018). When this intervention is
implemented it may challenge actors and entities that
believe the myths about people with I/DD and
sexuality.
Key Assumptions
for wider benefits
There is an opportunity to impact social
norms held that people with I/DD are eternal
children and not sexual beings. There is an
opportunity to educate people about healthy
sexual development. There is an opportunity
to educate people about keeping themselves
safe and preventing victimization.
There is no other curriculum being offered in
Louisiana. Trainers will provide a judgement free zone
to ask questions. Educational workshops will provide
opportunity to clarify misconceptions. Educational
workshops will provide education and direction for
people with I/DD about personal safety and healthy
relationships.
What is the long
term change you
see as your goal?
A training curriculum with modules that
increase skills and understanding about
critical information identified in the National
Sexuality Education Standards: safety,
relationships, intimacy, dating, marriage,
sexual health and well-being, gender, sexual
orientation, anatomy, and physiological
changes. In addition participation in
educational workshops will increase
protective capacity and reduce risk factors for
people with I/DD.
We will conduct pre/post-test to measure knowledge
gained for each workshop offered.

HEALTHY RELATIONSHIPS MATTER 60

Who are
stakeholders
related to long
term change
related to your
goal?
Louisiana Office of Behavioral Health
Louisiana Developmental Disabilities
Council
Families Helping Families Resource Centers
Local Governing Entities for Developmental
Disabilities Services
Office for Citizens with Developmental
Disabilities
Key stakeholders in the large-scale system is the
Developmental Disabilities Services System in
Louisiana.

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Appendix C
Logic Model

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Appendix D
Needs Assessment Results Infographic

HEALTHY RELATIONSHIPS MATTER 63

Appendix E
Interviews
# Name Organization Title Expertise Key Takeaways
1 James
Meadors
Self advocate Trainer about his
story and life
Felt is not enough
information about sexual
assault and also sexual
harassment. They other
information is that parent
put dome around person
who been sexual assault
they do not want them
having relationships
another person again. They
also issues as myself want
be opened about my sexual
assault felt like they female
do not having relationship
with me because her
parents do not having life
with me or she think do
something too her. Both
times would not cause
harm. James R Meadours
2 Caitlyn Levine Office of
Behavioral
Health, Maternal
Child Program
ACEs Program
Coordinator
Educator ACEs lead to people with
I/DD engaging in
dangerous behavior
because they don’t
recognize that the
experiences they lived are
not typical
3 Lillian
DeJeanne
La DD Council
Advisory Council
Self-advocate Self-advocate Network with other DD
Councils to see what they
are doing to reach people
during COVID
Perhaps check with the
National Association of
Developmental Disability
Councils
4 Doanie Perry ICAHSA Program Manager 25 years of
experience
providing /
monitoring
services for
people with I/DD
The info has to get passed
the gatekeepers, i.e.,
providers, parents,
caregivers
People would attend if they
knew the educ workshop
was being offered
How about target folks
living in group homes
during COVID?
Maybe connect with school
systems and offer to kids
still in high school between
18 - 21
HEALTHY RELATIONSHIPS MATTER 64

5 Sharon
Hennessey
People First of
Louisiana
Director Person with
disability
• We could recruit
people to attend
online workshops
through the
people first self-
advocacy chapters
across the state
People need info to know
how to recognize when
they are being exploited
6 Kelly Monroe The Arc of
Louisiana
Executive
Director
25 years of
experience
working with
folks with I/DD,
policy change,
legislative
advocate
People need access to
accurate information that is
understandable
7 Rickie Ainey Families Helping
Families of
Southeast
Louisiana
Information and
Referral
Person with I/DD Many people don’t have
access to needed info to
stay safe
It is hard for folks to get to
workshops because they
depend on staff for
transportation

8 Ashley
McReynolds
The Arc of
Louisiana
Program Manager Parent of
teenager with
I/DD
Picture cues are necessary
for some people
Everyone needs basic info
to be safe in the
community
9 Emily
DeSanctis
Rape, Abuse and
Incest National
Network
Training and
Education
Provides tech
assistance in US
to programs
developing
curriculums to
ensure trauma
informed and
person centered
The hotline is busy 24/7
with calls for assistance
Public policy advocacy is
important for creating
change
Must combat the
misconceptions and myths
10 Laura Sims Rape, Abuse and
Incest National
Network
Manager of
Program Services
Team
Provides tech
assistance in US
to programs
developing
curriculums to
ensure trauma
informed and
person centered
Curriculums can be
reviewed for trauma focus
They are starting to support
organizations to use online
platforms but no real ideas
for how to support us for
barriers of
attendance/recruitment for
online platform
11 Lynn Renihan Private provider Direct support
professional
40 years of
experience
supporting people
with I/DD
The 50 something guy I
support has never had any
sex education
He was arrested two weeks
ago for public indecency
(public urination) and I
wish I had known to talk to
him
HEALTHY RELATIONSHIPS MATTER 65

He really needs sex ed
classes
12 Lamar S Sheltered
Workshop
Director
Director Over 30 years of
expertise
supporting people
with I/DD
We have many people who
are viewed as sexual
beings by their families but
are involved in
relationships with people
they attend the center with
We try to work with some
people so they don’t
become involved with law
enforcement
13 Ms. Bradley Easter Seals Support
Coordinator
MSW, 8 years of
experience
I don’t think parents want
to accept that their child is
a sexual being
Sexuality is not addressed
on the annual certified plan
of care
Some people with
behavioral concerns, their
parents won’t let me bring
it up at the planning
meetings
14 Jamie
Duplechin
Quality Support
Coordination
Director 15 years of
experience
Most parents do not want
to even discuss possible
relationships, sexuality is
taboo for a lot of families
I am not sure that a lot of
parents would even attend
possible workshops
15 Mary L. State of
Louisiana
Occupational
Therapist
Almost 20 years
of experience
I haven’t been asked about
ways to address sexual
issues for people
Most people with
disabilities are too
embarrassed to talk about
and their families think of
them as children
16 Janise Monetta Florida Parishes
Human Services
Authority
Director of
Developmental
Disabilities
Services
Almost 40 years
of experience and
parent
We need education and
training about
relationships, age, smart
choices for mates, etc.
Parents, staff and people
with I/DD would benefit
from education and
training
17 Brenda
Gremillion
Jefferson Parish
Human Services
Authority
Medicaid
certification
specialist
Parent and 15
years of
experience
My son started talking
about relationships and
wanting a girlfriend in
middle school
I knew I had to talk to
him/teach him about it so
he would know how to
handle his interest in girls
HEALTHY RELATIONSHIPS MATTER 66

18 J Kamerick Access Alaska Peer Mentor Person with ASD Need resources for people
with autism to prevent
involvement with law
enforcement for issues
related to sexuality
Avoid sex offender registry
19 Angelina
Peppers
Parent, CAN Works at
residential facility
for people who
are older
Mom of two
sons, one
granddaughter,
worked in
hospital
previously
People in nursing home are
sexually active but no one
really talks about it with
the residents
Hard to tell if everyone that
is participating is really
saying yes
20 Family
Member 1
Reliable Direct support
professional
Aunt of 6 year
old with autism
We expect the school
teachers to provide us as
families with information
to address issues in
classroom but they don’t
really help
School teachers need
education about supporting
sexuality issues/behaviors
in classrooms
21 Ms. Tina Reliable Director/Owner Over 30 years of
experience
supporting people
with I/DD
Many families do not want
to face or recognize that
their family member is a
sexual being
We have supported many
people with issues related
to sexuality and/or sexual
frustrations some families
are more open minded than
others about supports in
this area
22 Teresa Frank Sewerage and
Water Board
Mom Daughter (32)
with I/DD and
MD
I realize that my daughter’s
issues with staff are related
to sexuality, I don’t think
she is a lesbian, I think she
just makes requests
because we only hire
females to work with her
We have reviewed the
resources we have been
provided about supports to
address sexual requests but
we are not going to use the
supports
23 Mary Jacob Families Helping
Families of
Greater New
Orleans
Executive
Director
Mom of adults
with disabilities
Sometimes the issues
related to sexuality are the
elephant in the room,
people don’t want to talk
about it even at team
meetings
People need support to
explore sexuality
HEALTHY RELATIONSHIPS MATTER 67

24 Stacy Guidry Families Helping
Families of
Northeast
Louisiana
Executive
Director
Mom of 3 adult
sons, 1 with
autism
Parents avoid discussions
with their children about
sex and sexuality
You have to start early and
keep talking
There are too many people
that are victimized
25 Shanee
Holmes
Parent Parent Mom of two
young sons on
autism spectrum
I can’t talk to them about
anything about sex because
they will discuss at school
I would be/am too
embarrassed
26 Vincent Magnolia
Community
Services
Service Recipient Person with I/DD
lives in group
home
I have been dating a long
time, the same woman
Engaged but parents don’t
approve of marriage
Never attended sex ed
classes
27 Albert Magnolia
Community
Services
Service Recipient Lives in own
apartment
Have had some girlfriends
Don’t really go places too
much, talk on the phone
Never been sex ed classes
28 Jessie Magnolia
Community
Services
Service Recipient Person with I/DD
lives in group
home
Never been sex ed classes
My mom says I can’t date
so I have never had a
girlfriend
29 Andrew Magnolia
Community
Services
Service Recipient Person with I/DD
lives in group
home
Never been sex ed classes
Don’t know anything about
dating
Asked girls to dances at
group home and bring
them flowers because Dad
sends them to me to bring
to girls
30 Roslyn Magnolia
Community
Services
Service Recipient Person with I/DD
lives in group
home
Never been sex ed classes
I am only child don’t have
sister to talk to about my
boyfriends
I don’t want to talk to my
Aunt (guardian)
31 Rhonda Magnolia
Community
Services
Service Recipient Person with I/DD
lives in group
home
Never been sex ed classes
I don’t want to date, I don’t
‘men folk’ they are not
nice to me
My cousin is a lesbian, it is
ok
32 Mary Magnolia
Community
Services
Service Recipient Person with I/DD
lives in group
home
Never been sex ed classes
My cousin is married to her
wife, I went to wedding, it
is ok with me
I like to date, my mom
takes me and my boyfriend
to the movies sometimes
HEALTHY RELATIONSHIPS MATTER 68

33 Teddy Magnolia
Community
Services
Service Recipient Person with I/DD
lives in his own
apartment
Never been sex ed classes
Had several girlfriends,
lots of dating
34 Thomas Magnolia
Community
Services
Service Recipient Person with I/DD
lives in group
home
Never been sex ed classes
My mom made me have
sex with her (was removed
from her custody, mom has
been deceased for 30 years,
continues to receive
treatment)
Didn’t know it was illegal
or wrong to have sex with
relative
35 Stacy Magnolia
Community
Services
Service Recipient Person with I/DD
lives in group
home
Never been sex ed classes
Never been interested in
any of that stuff
36 Betsy Magnolia
Community
Services
Service Recipient Person with I/DD
lives in group
home
Never been sex ed classes
I like to work, I am too old
for that dating thing now
I used to ask my mom
about married and babies
but she said no, not for me
37 Dale Magnolia
Community
Services
Service Recipient Person with I/DD
lives in group
home
Never been sex ed classes
I treat women like a
gentleman, I watch movies
to see how women like to
be treated, movies like on
lifetime

38 Daniel
Sheridan
Texas A & M
University Health
Sciences Center
Professor &
Director of
Healthcare
Education,
Research and
Intervention
Department
PhD, SANE
Nurse, RN,
FAAN
Look at theories of
causation for injuries
When assaults happen, call
the police, develop a
protocol in advance
People with IDD who are
victimized don’t have
access to support, services,
healthcare that they need
39 Marge Jozsa Former Director
and founder of
federally
qualified health
centers
Social worker,
domestic violence
shelter founder
MSW, MA Local FQHCs could
provide healthcare for
people, not emergency
services but primary
healthcare
Includes counseling, etc.
There is a sliding fee scale
for services
They will serve folks with
I/DD
40 Brenton
Andrus
Louisiana
Developmental
Disabilities
Council
Program Manager LCSW There is a need to educate
people about sexual
exploitation
Many people are easy
targets
Families members are not
prepared to deal with
HEALTHY RELATIONSHIPS MATTER 69

issues of sexuality for their
adult children with
disabilities
41 Mary Ballard Special Olympics
- Louisiana
Coach Mom of 3 sons,
one is 24 year old
with Downs
Syndrome
attending SLU –
Lions Up
Funding to Special
Olympics is cut
Focused on athletics only –
not positive about inclusive
athletic program Spec
Olym has launched
Families need to cover
relationship info with their
children, it is their
responsibility
42 Jennifer
Hebert
Magnolia
Community
Services
Executive
Director
Mom of 2 kids,
one son on
spectrum, 30
years working in
human services
field
Lots of issues about
relationships and consent
Issues related to
interdiction and ability to
consent
Lots of couples want to
date but parents are not
supportive
43 Wendy
Berniard
Magnolia
Community
Services
Director of
Community
Services (group
homes &
vocational)
20 years working
in field of human
services
Ongoing issues with
dating, intimacy
Work behavior vs. private
behavior
People need more info
about do’s and don’ts of
relationships
44 Kathy Dwyer Autism Society
of GNO; LSU
HSC HDC
Retired, mom One child with
I/DD, many years
working in
human services
Not sure how much my
daughter understands the
info
She is not interested in info
but she worries about her
safety after mom is no
longer available to protect
her
45 Rebecca
Mandal-
Blasio, PhD
Autism Spectrum
Therapies
Director of
Greater New
Orleans regions
Mom of two
girls, one with
ID, provides
ABA therapy to
children with
autism, years of
experience
supporting adults
living in the
community with
I/DD
There is not curriculum in
La being used to teach
people with I/DD about
sexuality
Many people have
significant behavior
concerns due to unresolved
trauma from abuse
Many people don’t know
they have been victimized
or have not been believed
in the past so they stop
reporting
46 Mark Thomas Secretary Louisiana
Department of
Health
Previous
Assistant
Secretary for
Louisiana Dept of
Health - Office
for Citizens with
Developmental
Many people do not have
access to quality healthcare
for different reasons
including lack of family
support, lack of provider
support, not enough
HEALTHY RELATIONSHIPS MATTER 70

Disabilities,
sibling of man
with I/DD
providers accepting
Medicaid
People with I/DD have the
right to relationships
There is no formal
curriculum for sex ed for
people with I/DD in
Louisiana, there are
materials available, it
needs to be individualized
for each person
47 Nick Gilbert Self Advocate 38 year old with
I/DD
Has knowledge of anatomy
Knows about condom
usage
Talks to his Dad about
health/sexuality questions
Wants to date/reports
girlfriends
Not interested in classes
“too private”
48
&
49
Mary and Don
Fennie
Retired Sibling and sister
in law of deceased
woman with I/DD
Caregivers for
sibling living in
small institutional
setting
No health or sexuality
education provided
She hated dr’s and her
behavior at OB/GYN
indicated that she had been
victimized
Didn’t know how to get
info from her about what
happened (limited
communication skills)
They signed her up for
training classes but not
sure
50 Deborah
Fagan
Hotel
management
Sibling and sister
in law of woman
with I/DD
Caregiver for
sister living with
her (60+)
“She has great healthcare
because I am her fierce
advocate”
Would support her to have
relationship if she
expressed interest – all
people deserve health
loving relationships
She attended sex ed classes
but not clear about her
understanding but she does
ask questions about what
happens on TV and news
and will remark about nice
or bad things people do
“I am certain she would tell
me if she was assaulted, I
have explained to her what
it means and her remarks
about news stories confirm
it”
51 Eileen
Fourroux
Retired Mom of 40 year
old with disability
Foster mom Very reluctant to talk about
it, therapist of 5 years
HEALTHY RELATIONSHIPS MATTER 71

reported that she never
opened up about abuse
Self-blame is big issue
Fierce advocacy necessary
to get her the services she
needed
52 Kathleen
Richey
Attorney,
previously a
Juvenile Judge,
Louisiana CASA
Association
Executive
Director
Mom of 3
children, one with
significant
disabilities
Sex education not offered
in school district,
prohibited by statute from
school board
Everyone should be
supported to have healthy
relationships if that is their
choice
Issue of capacity to consent
(legally) to intimate
relationships
“Fierce advocate”
53 Walter Fahr,
LCSW
Dept of Children
and Family
Services, retired
Social Worker,
member of the La
Chapter of the
National
Association of
Social Workers
Expertise in sex
trafficking and
services for
children with
disabilities
Healthcare access is
complicated for kids in
foster care and even more
complicated for kids with
disabilities
Worked many cases
involving sexual abuse
when children did not even
recognize that they were
being exploited
Everyone entitled to
experience love and
relationships
More education and
training is needed for kids
in child welfare system,
kids with disabilities
especially vulnerable, there
is a gap in prevention
efforts in La
54 Scott Modelle Consultant, PhD Former Tennessee
Director of
Department of
Child and Family
Services
Brother of man
with I/DD, expert
forensic
interviewer
Everyone entitled to health
and sexual education and
to engage in healthy
relationships
My brother did not
participate in any sex ed
classes, none were ever
offered
Curriculums need to be
adapted for people with
I/DD
55
-
59
FBI Special
Agents
Louisiana Child
Pornography
Task Force
5 Special Agents Law Enforcement
Officers
Some people with I/DD are
accidental perpetrators
Don’t recognize behaviors
that are criminal
Victims with disabilities
need to be credible
witnesses
HEALTHY RELATIONSHIPS MATTER 72

60 Jeff Arseneaux Public Speaker,
Consultant, Self-
Advocate (40+)
Owner of
CallonJeff.com
Provides training
to people about
his experience as
a person with
cerebral palsy
Didn’t start puberty at
same time as other guys
and when he attended the
sex ed class (?’s on paper
and teacher answered)
didn’t really understand but
too embarrassed to say so
Parents never talked about
sex to him, he learned
everything on his own
Need curriculum based
upon developmental levels
people have achieved
Parents need to plan for
puberty
Public perception (self-
image) for potential dates
As soon as I talk about sex
I am viewed as a pervert
Very lonely
61 Debbie
Macaluso
Parent Parent Parent of adult
woman with
intellectual and/or
developmental
disability (I/DD)
Has knowledge of anatomy
and birth control
Doesn’t want to talk to
parents about
health/sexuality questions
Wants to date but doesn’t
know where to meet people
62 Ecoee Rooney Ochsner Hospital Internal
Consultant for
Nursing
Administration
Sexual Assault
Nurse Examiner,
President Elect of
Louisiana Nurses
Association
There is not special
training for SANE
examiners to work with
people with I/DD
SANE examiners are
designated by the coroner
in each parish
Folks can go to the ED,
consent to exam and have
up to 30 days to decide
whether or not to report
Lots of PwI/DD don’t
recognize they have
victimized and don’t have
language to report
63 Emily Lewis Planned
Parenthood of
Louisiana
Policy Advocate Supported people
with I/DD living
in community
People fail to look at the
whole individual
Planning and supports need
to include information
about relationships,
intimacy, everything
because people are so
lonely
64 Sue Ellen
Stewart
Youth Services
Bureau
CFO Brother with a
I/DD
Parents don’t recognize the
impact loneliness has on
the decisions people living
in the community make,
many people with I/DD
HEALTHY RELATIONSHIPS MATTER 73

make poor choices because
they long for relationships
65 Rebecca Ellis Southeastern
Louisiana
University
Recruiter Mom of son with
ASD

HEALTHY RELATIONSHIPS MATTER 74

Appendix F
Graphic Representation of Capstone Project Components

HEALTHY RELATIONSHIPS MATTER 75

Appendix G
Projection for Three Years/Phases of Operations

HEALTHY RELATIONSHIPS MATTER 76

Appendix H
Pre-/Post-Test Intimacy and Relationships: Preventing Exploitation
I am: ___18-25 ___26-35 ___36-45 ___46-55 ___56-65 ___over 65
Gender: ___male ___female ___transgender ____other ___Prefer not to say
Highest level of education completed: ___GED ___Certificate
___High School diploma ___College/Graduate School
1. How often should sexually active people see their physician?
a. Once a year
b. Every 6 months
c. Every 3 months
d. Every month

2. Should you discuss the consequences of sex with your partner before you do it?
a. No, too embarrassing
b. No, it ruins the mood
c. Maybe
d. Yes, it is important

3. What is a PAP Smear?
a. Method of birth control
b. A type of pregnancy test
c. A procedure to examine the cervix
d. A female reproductive organ

4. What is a digital rectal exam?
a. A method of birth control
b. A type of pregnancy test
c. A procedure to examine the prostate
d. A female reproductive organ

HEALTHY RELATIONSHIPS MATTER 77

5. Consent means
a. Someone says yes, and they are sure about it
b. Someone says yes, and they are unsure or worried about it
c. Someone says no but I think they mean yes
d. Someone says yes and then changes their mind and says
no

only if you have
Yes No Don’t Know underarm hair

Can girls get pregnant before
having their first period?

Do birth control pills protect
against sexually transmitted
infections?

Do all sexually transmitted
infections have symptoms?

Should I tell when someone
touches me, and it makes me
uncomfortable?

I have attended sexual
education classes.

Abstract (if available)

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Asset Metadata

Creator Delvisco, Sharon (author)

Core Title Preventing exploitation of people with intellectual and developmental disabilities (I/DD) healthy and unhealthy relationships educational workshops sustaining innovation: healthy relationships matter

School Suzanne Dworak-Peck School of Social Work

Degree Doctor of Social Work

Degree Program Social Work

Publication Date 12/06/2020

Defense Date 12/13/2020

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

Tag Family violence,healthy vs unhealthy relationships,OAI-PMH Harvest,people with intellectual and developmental disabilities,sexual violence

Language English

Contributor Electronically uploaded by the author (provenance)

Advisor Brooks, Devon (committee chair), Schwartz, Sarah (committee member), Weiss, Eugenia (committee member)

Creator Email sharon@teamdynamicsweb.com,sharondelvisco@yahoo.com

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c89-400627

Unique identifier UC11666632

Identifier etd-DelviscoSh-9182.pdf (filename),usctheses-c89-400627 (legacy record id)

Legacy Identifier etd-DelviscoSh-9182.pdf

Dmrecord 400627

Document Type Capstone project

Rights Delvisco, Sharon

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