Abstract
Youth with intellectual and developmental disabilities (IDD) are at significantly higher risk of experiencing multiple types of interpersonal victimization across their lifespan compared to their peers without IDD. Despite the extensive literature on efficacy of prevention education programs for children without IDD, very little is known about comparable programs for children with IDD. In this scoping review, we synthesized the literature on existing programs for children with IDD. We identified thirteen programs which we critically assessed against established best practice criteria for prevention and special education and evaluation. The current literature on prevention education programs for children with IDD exhibits significant limitations, such as weak research designs and poor measurement of outcomes.
Keywords
Introduction
Children with intellectual and developmental disabilities (IDD) are a heterogenous group that vary significantly in cognitive abilities. IDD are characterized as impairments in general mental abilities that impact adaptive functioning ‒ conceptual, social, and practical – in a person’s life with an age of onset before 18 years (American Psychiatric Association, 2013).
The increased risk of abuse and peer victimization (collectively termed victimization hereafter) for children with IDD compared to their peers without IDD is well established (Klebanov et al., 2023; Sullivan & Knutson, 2000; Vanderminden et al., 2023; Wissink et al., 2015). In general, children with IDD are at increased risk for victimization because of extended dependence on adults, language and social deficits, and incongruence between physical and cognitive maturity (Algood et al., 2011; Foster & Sandel, 2010; Jojo et al., 2023; Maclean et al., 2017). We know very little, however, about effective strategies that address this increased risk and prevent victimization for children with IDD.
Like programs for children without IDD, prevention programs for children with IDD should address how to recognize, respond, and report abuse or potential abuse. School-based prevention education is a widely used and effective strategy for preventing victimization among children without IDD. Decades of research on these programs offer insight into their efficacy as well as what features seem to be most important for improving children’s abilities to recognize, respond, and report. After participating in these education programs, children demonstrate increased knowledge of risky situations, self-protective behaviors (e.g., being assertive, reporting unsafe situations to adults), bystander behaviors, and disclosures of victimization (Bright et al., 2022; Finkelhor et al., 1995; Kennedy, 2020; Polanin et al., 2012; Walsh et al., 2018). It has also been made clear that children who experience one type of victimization are also likely to experience multiple other types of victimization (Hébert et al., 2016; Turner et al., 2016) and that victimization experiences are interrelated (Higgins et al., 2023). Most programs, however, address only one type of victimization (e.g., bullying or child sexual abuse).
School-based prevention education with appropriate design or adaptations may also be an effective strategy for preventing victimization among children with IDD. In an outline of the current state of school-based victimization prevention education programs for youth with IDD, Ortega and colleagues (2023) stressed the importance of parent and community involvement in developing evidence-based prevention programs for children with IDD. Based on focus groups with parents and professionals working with children with IDD (Bődi et al., 2023) emphasized the value of having highly trained educators leading the program while staff assists the students.
Despite the well-documented increased risk of victimization among children with IDD, and the success of prevention education for children without IDD, relatively little is known about the existence or efficacy of prevention education programs that are designed for children with IDD (Goh & Andrew, 2021). The current study addresses this gap in the literature by conducting a scoping review of victimization prevention education programs that are specifically designed or adapted for children with IDD. The research questions for this review include: (i) What victimization prevention education programs exist for children and youth with IDD?, (ii) What content, structure, and teaching strategies are used in prevention education programs for children and youth with IDD?, and (iii) What evidence of the effectiveness of prevention education programs for children and youth with IDD exists?
Method
A scoping review was considered the most suitable approach, using combination of guidelines including Arksey and O’Malley’s (2005) classic six stage process, and the PRISMA-ScR extension for scoping reviews (Arksey & O’Malley, 2005; Tricco et al., 2018). After summarizing the literature, congruent with Arksey and O’Malley’s (2005) sixth stage, we reviewed findings with experts in prevention education and education for children/youth with IDD. This consultation process assisted in the interpretation of findings, guided presentation of findings, and shaped recommendations for research and practice.
Literature Search
Search Terms Used Across the 8 Databases.
*Items indicate truncation of search term. For example, child* includes child and children; disability* includes disability and disabilities.
**Term used for intellectual disabilities in the Diagnostic and Statistical Manual of Mental Disorders (DSM) until release of DSM-V in 2013.
Searches for programs were conducted from January to April 2023 and repeated in October 2023 using eight databases: ERIC (EBSCOhost), Education Source, PsycINFO, Academic Search Premier, CINAHL, Psychology and Behavioral Sciences Collection, Web of Science, and the search engine Google Scholar. We also queried several professional networks for knowledge of prevention education programs that may not have been documented in the scientific literature. Finally, we identified programs and evaluations through citations in and of selected studies. Database searches were limited to papers published in English with no date restrictions used. For Google Scholar searches, the first 3 pages constituting the most relevant results were used.
Literature Screening and Selection
Title review was conducted by author MB. Two authors (DO, MB) reviewed abstracts and full-text articles to identify programs. Conflicts were resolved through consensus discussion. Programs were selected if they met the following inclusion criteria: (i) included content on victimization prevention (victimization types including but not limited to physical abuse, sexual abuse, sexual assault, emotional abuse, bullying, and neglect); (ii) for children or youth with IDD (programs were included if they were developed specifically for children with IDD or if they had been developed for children without IDD and adapted for children with IDD); and (iii) were implemented in school settings.
Programs were excluded if they utilized a single subject case study design, were designed to solely meet the needs of adults, were implemented outside of school settings (such as in therapeutic environments or clinics), were primarily focused on sexual or reproductive health or abduction, or did not provide sufficient information to determine the topics covered or the teaching strategies employed in the prevention education program.
Data Extraction and Coding
With programs identified, three authors (DO, MB, CB) then collected supporting materials for each program (e.g., program manuals, reports, websites). Program data extracted included: targeted participant group, program setting, topics covered, teaching strategies employed, and evaluation methods and results of evaluation(s). Teaching strategies were coded against the best practices for victimization prevention education (Finkelhor et al., 2014; Gaffney et al., 2021; Walsh et al., 2018) and best practices for special education (Bastable et al., 2021; Räty et al., 2016; Schaafsma et al., 2015).
Students with IDD have difficulties processing new information, analyzing abstract ideas, communicating, and learning social skills (Boat et al., 2015). Thus, a variety of teaching strategies - also known as pedagogical approaches, or pedagogies - including chunking (i.e., breaking down material into simple components and linking them together), use of visual images, modeling behaviors, role-play, and others would be needed to help students with IDD learn more effectively (Algahtani, 2017; Schaafsma et al., 2015). Modeling behavior aids in teaching students with IDD. Students with IDD benefit from seeing behaviors they are expected to perform before they are asked to complete them. It may also be helpful to avoid abstract examples as these concepts may be difficult for children with IDD to understand. Explicit, direct instruction paired with real-life examples and opportunities for repeated practice also helps students with IDD master material (Westwood, 2020).
Evaluation approaches were coded against the Administration for Children & Families Common Framework for Research and Evaluation (Administration for Children and Families, Office of Planning, Research and Evaluation, 2016). The lead author (MB) created a coding scheme for each of these study components. For coding of practices, the practice was coded as present only if explicit evidence was present in any of the program materials including manuals, reports, peer-reviewed journal articles, or websites. For practices that were not explicitly addressed, researchers coded the practice as “unclear or unable to determine.” Authors DO and CB were trained in the coding scheme. These two researchers coded all programs. Each discrepancy was discussed and resolved. Materials used for the coding included content such as peer-reviewed journal articles, and non-peer reviewed theses, reports, program manuals, sample lesson plans, teacher’s guides, sample presentation materials. The authors emailed at least one individual (researchers, program developers, program staff) from each program to ensure that all readily available materials have been obtained to conduct a thorough review.
Findings
Searches from all databases yielded 1750 citations. Removing duplicates, yielded 1443 unique citations. Excluding records based on title and abstract screening left 41 citations for full-text review. Full-text review excluded another 32 citations. Citations alone yielded nine evaluation studies that described seven programs (two programs evaluated twice). Six additional programs were identified through professional networks and word-of-mouth, however there were no evaluation studies conducted on them. The final sample included thirteen programs and nine evaluation studies. An adapted PRISMA flowchart (Page et al., 2021) is shown in Figure 1. Study flow diagram (adapted from Page et al., 2021).
School-Based Victimization Prevention Education Programs
School-Based Victimization Prevention Education Programs for Children and Youth With Intellectual and Developmental Disabilities.
Victimization Topics Covered in School-Based Prevention Education Programs for Children With IDD.
Child Sexual Abuse: A Solution (CSA: A Solution)
CSA: A Solution was developed in 1984 for pre-school and elementary school aged children, and to our knowledge hasn’t been in use in recent years. This program addressed sexual abuse, specifically unsafe touch, body autonomy, and reporting abuse. It consisted of 6 videos that vary in length from 15-30 minutes. The program relied on models, rehearsals, and group discussions as teaching strategies. CSA: A Solution took a systems approach by including 3 segments: one for the child, one for the parent, and one for teachers and school administration. To our knowledge, no evaluation has been conducted on this program.
Special Education Family Life and Sexual Health (Special Education FLASH)
Special Education FLASH was designed in 1991 by the Public Health – Seattle & King County, Family Planning Program. Lessons have been revised as recent as 2015. Led by teachers, Special Education FLASH included content on sexual abuse as well as inappropriate touch, healthy relationships, saying “no”, verbal and non-verbal communication. The special education FLASH program utilized adaptations for physical differences and communication augmentation by encouraging non-verbal ways of saying no, including in American Sign Language. Special education FLASH includes 28 sessions of unspecified length. To our knowledge, no evaluation has been conducted on this program.
Stay Safe Child Abuse Prevention Program
The Stay Safe Program was developed for children without IDD and Rose Cullen adapted the program for use in special education. The latest program update found was 2016. Both programs are delivered primarily in Irish primary school classrooms (Cullen R., 1996). Stay Safe addressed sexual abuse, bullying, and physical abuse. Other topics included feeling safe versus feeling unsafe, good, and bad touches, secrets and how to tell reliable adults, risks of strangers, and bullying. The Stay Safe Program used simple, direct language and concrete examples. Children also engaged in role playing and learn concepts using the arts (e.g., poetry, music, stories). Although the Stay Safe program for children without IDD had clear recommendations for number of lessons and target recipient, the adapted program for children with IDD did not include such information. To our knowledge, no evaluation of the Stay Safe program for children with IDD has been completed.
Kid & Teen Safe: An Abuse Prevention Program for Youth With Disabilities
Kid & Teen Safe was developed in 2002 by SafePlace: Domestic Violence and Sexual Assault Survival Center in the US and was delivered primarily in K-12 classrooms (Abramson & Mastroleo, 2002). Kid & Teen Safe was designed for school-aged children with disabilities to learn about sexual abuse and prevention (Abramson & Mastroleo, 2002). This program was delivered to groups of children with disabilities including IDD in schools but also could be delivered in summer programs, service agencies, residential facilities, and other settings in which children with disabilities are served. Lessons were 3–4 sessions for 40–60 minutes each. Kid & Teen Safe addressed sexual abuse, bullying, physical abuse, emotional abuse, neglect, and trafficking/exploitation. This program also addressed personal boundaries, good and bad touches, assertively saying “no” and “stop,” escaping abusive situations, telling safe adults, and other personal safety topics. The program also included a 60–90 minute presentation for school staff and parents as well as a resource library for the general public. Abramson and Mastroleo conducted an evaluation of the program in 2002.
Growing Pains Program (GPP)
The Growing Pains Program (GPP) was developed for adolescents with mild to severe IDD in a special education setting by an Australian working group led by Loretta Sheppard (Sheppard, 2006). GPP developers integrated input from school administration, teachers, parents, welfare staff, and therapy staff. GPP addressed child sexual abuse (CSA) prevention, bullying prevention strategies, and identifying a safe adult. Other topics included social skills, drug education, relationships and sexuality, protective behaviors, grieving and loss, human life cycle, and personal hygiene. GPP was piloted over two school terms, or 20 weeks, and then revised as needed. Prior to the pilot, all teachers attended professional development sessions for each topic which included recommendations for teaching strategies. During the pilot, one 45–60-min session was administered each week. Teachers were encouraged to reinforce skills taught during the session throughout the week to optimize student learning. Teaching methods included didactic instruction, videos, activities, reviews, and games. Parent involvement was limited to a post-program questionnaire that asked about their valuation of topics. Sheppard (2006) conducted a feasibility evaluation of GPP.
Creating Safe Environments
Creating Safe Environments was adapted for youth with developmental disabilities in 2008 by Dr Lee Murray in collaboration with community partners (Murray, 2019). Victimization topics addressed by the program included sexual, physical, and emotional abuse. Other topics included consent, unhealthy relationships, safe and unsafe secrets, as well as identifying private body parts. Creating Safe Environments consists of 5 sessions that are each 60 minutes. The program relied on puppets, story boards, critical thinking, and group discussions as teaching strategies. Teacher and parent involvement in the program were not well described. Murray (2019) conducted an evaluation of the design and development of Creating Safe Environments.
Sexuality Education for People with Developmental Disabilities
Sexuality Education for People with Developmental Disabilities was created in 2009 and was last updated in 2018 with topics such as social media and gender identity. The curriculum is managed by Elevatus Training and is designed for implementation in both schools and community agencies. The program included content on sexual abuse, among other topics such as body autonomy, healthy boundaries, and different types of relationships. The program consisted of 22 sessions that are unspecified in length. Teaching strategies employed by the program were interactive exercises, videos, games, and direct instruction. Teacher and parent involvement in the program were not well described. To our knowledge, no evaluation of the Sexuality Education for People with Developmental Disabilities program has been completed.
IMPACT:Ability
IMPACT:Ability was developed by the Boston, MA (USA) chapter of the IMPACT, an international affiliation of organizations that teach self-defense to prevent abuse and violence. IMPACT: Ability was designed for youth and young adults with disabilities and includes content specifically for individuals with IDD. The Massachusetts advocates Standing Strong (MASS) self-advocacy education was also incorporated into the IMPACT:Ability curriculum. The latest evaluation of IMPACT:Ability was published in 2017. IMPACT: Ability was designed to be delivered in a special education setting.
IMPACT:Ability addressed CSA, physical abuse, and bullying prevention strategies as well how to report incidents of maltreatment. Topics further explored awareness of surroundings, personal boundaries, protecting their bodies, safe adults, and safe and unsafe secrets. IMPACT:Ability consisted of (10) 90-min weekly sessions. This included two sessions teach MASS self-advocacy strategies. IMPACT:Ability was taught using experiential teaching and learning strategies such as role playing, rehearsal, one-on-one coaching, interactive exercises, physical activity, and critical and moral thinking. IMPACT:Ability also provides flexibility in its curricula by allowing teachers to use previously accepted adaptations to teach children with diverse learning needs. Parents were invited to participate in the IMPACT:Ability training, but their involvement was not well described. Teacher involvement was not well-described. Wismar conducted an effectiveness study of IMPACT: Ability in 2020.
Healthy Relationships & Autism (HR)
Healthy Relationships & Autism is a curriculum designed to teach basic hygiene, basic biological sex education, and relationship development to adolescents with Autism Spectrum Disorder (ASD). The curriculum was designed be implemented in classroom settings but can be adapted to community settings. Similarly, it was designed to be implemented in a group format (5–8) but can be adapted to individual delivery (Sutton & Wesley Spectrum Services, 2015). The program included 19-26 sessions (depending on grade level) that each lasted 40–50 minutes. The program included content on child sexual abuse, digital safety, and bullying. Other topics included basic hygiene skills, basic biological sex education, and relationship development. Teaching strategies used by facilitators included role-playing, direct instructions, and video demonstrations. Parents were encouraged to be involved in completing the home supplements to the program. Teacher involvement was not well described. Pask and colleagues (2016), as well as Hart (2020) conducted an efficacy evaluation of Healthy Relationships and Autism.
Child Sexual Abuse Prevention Intervention (CSAPI)
The CSAPI program was developed and initially piloted in Korea in community settings and focused solely on CSA prevention for children with IDD (Kim, 2016). Development details of CSAPI are not described. CSAPI was later adapted to be delivered in a special education classroom setting for adolescents with mild IDD (Warraitch et al., 2021). The latest evaluation of CSAPI was published in 2021 suggesting the program may still be in use. The school-based CSAPI is administered in (5) 30–40-min weekly sessions. Topics included body ownership, body parts and private parts, appropriate and inappropriate situations, refusing abusive lures physically and verbally, and disclosures. Instruction, modeling, role-plays, and feedback were used to teach the program. Teacher and parent involvement were not described. Warraitch and colleagues published an efficacy evaluation of CSAPI in 2021.
Emma Untouchable
Emma Untouchable is a CSA prevention program that was initially developed for females with intellectual disabilities between the ages of 8–12 (Chodan et al., 2017). Emma Untouchable was designed for a community setting by Reis and colleagues in Germany. It was then revised and implemented in a special education setting in 2022 suggesting it is still in use (Reis et al., 2022). The program includes 10 group (4-8 participants) sessions that each last 90 minutes. Sexual abuse is the only victimization type addressed by Emma Untouchable. Other topics include body language and emotions, basic self-defense, navigating situations of anger and fear, getting help, naming private parts, reflecting on touch, and learning about body ownership. Teaching strategies include didactic instruction modeling, prompting, rehearsal, reward for appropriate behaviors, and in-situ probes. Researchers also use a puppet in their instruction. The puppet serves as a coping and mastery model, exhibiting appropriate behaviors and offering participants guidance on developing their own strategies. Teacher and parent involvement are not well described. Reis and colleagues published an efficacy evaluation of Emma Untouchable in 2022.
No-Go-Tell!: Child Abuse Prevention
The No-Go-Tell! Curriculum was created for children ages 3–7 with developmental and learning disabilities and was implemented in preschool and elementary schools. The number of sessions and length of each are unknown. The only victimization type covered by No-Go-Tell! was sexual abuse, and it included content on reporting abuse, private parts, and types of relationships. Teaching strategies used by the program are concrete examples, modeling, role play, and interactive exercises. Teachers and school administrators received a guide on implementation, with content on talking to parents about the program. To our knowledge, no evaluation of No-Go-Tell!:Child Abuse Prevention has been completed.
CIRCLES Stop Abuse
CIRCLES Stop Abuse was a video program for students with developmental disabilities that aimed to teach students how to recognize, react to, and avoid exploitation. The only victimization type covered by this program was sexual abuse. Other topics included, recognizing, and reacting to exploitation, protective behaviors, and reporting abuse. CIRCLES Stop Abuse relied on real-life demonstrations, rehearsals, and stories for teaching strategies. Teacher and parent involvement were not well described. To our knowledge, no evaluation of CIRCLES Stop Abuse for children with IDD has been completed.
Best Practices for Prevention and Special Education
Best Practices for Prevention Education and Special Education Used in Prevention Education Programs for Children With Intellectual and Developmental Disabilities.
*Creator reported presence of best practice but did not provide documented evidence.
*Creator reported presence of best practice but did not provide documented evidence.
**Creator noted 75 minutes of total content. However, we calculated total based on number and length of each session.
*Creator reported presence of best practice but did not provide documented evidence.
Evidence-Informed
We found evidence that two programs (Creating Safe Environments, Sexuality Education for People with Developmental Disabilities) were based on the latest research on general education. We found evidence that one program (Stay Safe) was based on the latest research on victimization prevention, four programs (Special Education FLASH, Stay Safe, Kid & Teen Safe, Sexuality Education for People with Developmental Disabilities) were developed based on the latest research on inclusive practices. And five programs (Stay Safe, Growing Pains, Creating Safe Environments, Healthy Relationships & Autism, Emma Untouchable) were developed based on the latest research on special education.
Four programs (Kid & Teen Safe, Growing Pains, Creating Safe Environments, Sexuality Education for People with Developmental Disabilities) used Community Based Participatory Research (CBPR) in which persons with IDD contributed to the development and evaluation of the program. Six programs (Special Education FLASH, Stay Safe, Kid & Teen Safe, Creating Safe Environments, IMPACT: Ability, Emma Untouchable) outlined clear goals or objectives but none of the programs included a logic model or theory of change.
Content
We found evidence that six programs covered multiple types of victimization. All programs covered child sexual abuse, five programs (Stay Safe, Kid & Teen Safe, Growing Pains, IMPACT:Ability, Healthy Relationships & Autism) covered bullying, four programs (Stay Safe, Kid & Teen Safe, Creating Safe Environments, IMPACT:Ability) covered physical abuse, two programs (Kid & Teen Safe, Creating Safe Environments) covered emotional abuse, and only one program covered neglect, or trafficking/exploitation (Kid & Teen Safe). Only one program (Healthy Relationships & Autism) covered cyber or digital safety.
Nine programs (CSA: A Solution, Special Education FLASH, Stay Safe, Kid & Teen Safe, Creating Safe Environments, Sexuality Education for People with Developmental Disabilities, IMPACT: Ability, CSAPI, Emma Untouchable) included content about body autonomy and ownership, safe and unsafe touches, and discussed how to say “stop” or “no.” Ten programs (Special Education FLASH, Stay Safe, Kid & Teen Safe, Growing Pains, Creating Safe Environments, Sexuality Education for People with Developmental Disabilities, Healthy Relationships & Autism, CSAPI, Emma Untouchable, No-Go-Tell!) identified private body parts. Six programs (Special Education FLASH, Stay Safe, Kid & Teen Safe, Growing Pains, Healthy Relationships & Autism, CSAPI) discussed identifying a safe adult and nine programs (CSA: A Solution, Special Education FLASH, Kid & Teen Safe, Creating Safe Environments, IMPACT:Ability, CSAPI, Emma Untouchable, No-Go-Tell!, CIRCLES Stop Abuse) discussed how to report potential abuse.
Five programs (Stay Safe, Kid & Teen Safe, Creating Safe Environments, IMPACT:Ability, Healthy Relationships & Autism) discussed safe and unsafe secrets and seven programs (Special Education FLASH, Kid & Teen Safe, Growing Pains, Creating Safe Environments, Sexuality Education for People with Developmental Disabilities, IMPACT:Ability, Healthy Relationships & Autism) addressed healthy and respectful relationships including in the context of dating relationships.
Length, Frequency, and Intensity
Nine programs were delivered across multiple days; four programs (Stay Safe, Growing Pains, No-Go-Tell!, CIRCLES Stop Abuse) did not specify the number of sessions. Session durations ranged from 15-90 minutes each with the total time of programs ranging from 90-1170 minutes.
Developmentally Appropriate
Six programs (Special Education FLASH, Kid & Teen Safe, Growing Pains, IMPACT:Ability, No-Go-Tell!, CIRCLES Stop Abuse) used concrete examples and avoided abstract concepts. Six programs (Special Education FLASH, Stay Safe, Kid & Teen Safe, IMPACT:Ability, Healthy Relationships & Autism, No-Go-Tell!) described adaptations for physical differences and communication augmentation. Three programs (Stay Safe, IMPACT:Ability, Healthy Relationships & Autism) used developmental sequencing of content that matched students’ cognitive abilities and developmental age, maturity, and ability. Four programs (Special Education FLASH, Stay Safe, Kid & Teen Safe, No-Go-Tell!) recommended that instructors use simple, direct, concrete language when presenting material. Although some of the programs reviewed suggested that presentations of material be customized for children with IDD, they did not make explicit recommendations about exactly how this might be achieved.
Varied Teaching Methods
All programs used varied teaching methods including but not limited to modeling, role playing, rehearsal, one-on-one coaching, critical and moral thinking, physical activity, and interactive exercises, small group settings, group discussions, social reinforcement, feedback, videos, multimedia presentations, songs, coloring books, toys, storybooks, and games.
Positive Framing
Seven programs (Special Education FLASH, Stay Safe, Creating Safe Environments, Sexuality Education for People with Developmental Disabilities, IMPACT: Ability, Healthy Relationship & Autism, Emma Untouchable) were positively framed. Majority of the programs avoided using scare tactics or confrontational strategies such as teaching stranger danger and testing children in unsafe scenarios.
Whole-School Approach
Six programs (Stay Safe, Kid & Teen Safe, Growing Pains, Creating Safe Environments, Healthy Relationships & Autism, Emma Untouchable) included programming for multiple grades within a single school; six programs (CSA: A Solution, Special Education FLASH, Stay Safe, Kid & Teen Safe Healthy Relationships & Autism, No-Go-Tell!) included programming for teachers and four programs (CSA: A Solution, Stay Safe, Kid & Teen Safe, No-Go-Tell!) included programming for school staff. No program included school-wide activities such as banners or posters to hang outside of the classroom, whole-school assemblies, or whole-school activities.
Engages Parents and Community Members
Six programs (CSA: A Solution, Special Education FLASH, Stay Safe, Kid & Teen Safe, Growing Pains, Healthy Relationships & Autism) included content and/or activities for parents, one program (Kid &Teen Safe) included content and/or activities for community members and members of the child’s support team (e.g., occupational therapy).
Qualifications of Instructor
One program (Kid & Teen Safe) program suggested instructors have training or experience in prevention education and four programs (Special Education FLASH, Kid & Teen Safe, Creating Safe Environments, Sexuality Education for People with Developmental Disabilities) suggested facilitators to have training or experience in special education. No program specified training or experience in general education, child welfare, or child protection.
Monitoring and Evaluation
Ten programs (Special Education FLASH, Kid & Teen Safe, Growing Pains, Creating Safe Environments, Sexuality Education for People with Developmental Disabilities, IMPACT:Ability, Healthy Relationships & Autism, CSAPI, Emma Untouchable, No-Go-Tell!) included measures for assessing student learning, three programs (Growing Pains, IMPACT:Ability, Emma Untouchable) included measures for long-term outcomes or program impact, and two programs (IMPACT:Ability, Healthy Relationships & Autism) included fidelity measures or other mechanisms to monitor implementation quality.
Evidence of the Efficacy or Effectiveness
Type of Evaluation
Evaluations of School-Based Prevention Education Programs for Children With IDD.
*Sample size at enrollment.
Design
Four evaluations used a treatment-only design in which all participants received the program (Abramson & Mastroleo, 2002; Sheppard, 2006; Warraitch et al., 2021; Wismar, 2020). Three evaluations used a quasi-experimental design (Dryden et al., 2014; Hart, 2020; Pask et al., 2016) and one evaluation (Reis et al., 2022) used an experimental design with randomization of a treatment and control conditions. Seven evaluations included pre and post assessments of student outcomes.
Sample
Evaluation sample sizes ranged from 145 to 798 participants. Participant ages ranged from 8 to 21 years with two studies not reporting specific ages of participants (Abramson and Mastroleo, 2002; Wismar, 2020). Gender and racial/ethnic characteristics were not mentioned in two evaluations (Abramson and Mastroleo, 2002; Wismar, 2020). One evaluation had only female participants from a specific ethnic background without any further documentation of racial characteristics (Warraitch et al., 2021). One study had only female participants without any mention of racial/ethnic characteristics (Reis et al., 2022). One study had only White male participants (Pask et al., 2016). Hart (2020) reported 8 male and 4 female participants in the experimental group with majority of the student identified as Caucasian. One evaluation reported 48 male and 20 female participants (Sheppard, 2006). Dryden and colleagues (2014) reported a heterogenous sample with 58% males and a mix of non-Hispanic Black, non-Hispanic White, Hispanic and “other” race/ethnicities. Murray (2019) didn’t specify sample demographics.
Assessment and Measures
Knowledge
In an evaluation of the Kid & Teen Safe program, researchers asked one open-ended question (i.e., “What would you do if a person tries to hurt you?”) to evaluate children’s knowledge. Responses were scored as correct if the student indicates (without prompting) that s/he would tell the person “No!,” leave the situation, tell an adult, or a similar reply.
Reis and colleagues (2022) used a board game to measure children’s knowledge gained from the Emma Untouchable program. Questions within the board game included items from the Personal Safety Questionnaire (PSQ; Wurtele, 2009). During the game, participants answered questions about naming body parts and labeling appropriateness of touches. Participants did not receive feedback on their responses. Instead, following a response to a question, participants were allowed to move forward on the board regardless of appropriate or inappropriate response. Knowledge was also measured using video vignettes. Participants watched the beginning of a CSA event and were asked how they would react. Responses were scored on a scale of 0–4 for appropriateness and accuracy (Lumley et al., 1998).
In their evaluation of IMPACT:Ability, Dryden and colleagues created seven items to measure knowledge (e.g., “What do you do when someone is standing too close to you, and you do not like it?” and “What is a self advocate?”). Response options were multiple choice and true/false. A subsequent evaluation of IMPACT:Ability conducted by Wismar (2020) used the same self-report items. Researchers did not specify the amount of missing data or actions taken to exclude (or impute) in analyses.
Warraitch and colleagues (2021) created a 5-item questionnaire to measure knowledge of the main components of the CSAPI intervention (e.g., body ownership, appropriate/inappropriate gestures). Items were scored as either inaccurate, somewhat accurate, or accurate. Researchers did not specify the amount of missing data or actions taken to exclude (or impute) in analyses. Researchers did not specify who scored questionnaires or what criteria were used to determine accuracy.
Hart (2020), Pask and colleagues (2016) used a curriculum-based questionnaire that assessed knowledge acquisition and retention pre and post intervention. The Healthy Relationships & Autism curriculum determined that a score of 85% and above is assumed to be sufficient. The specific questions are not included in the document, but it is mentioned that the pre/posttest can be found in the curriculum manual.
Confidence/Self-Efficacy
In their evaluation of IMPACT:Ability, Dryden and colleagues (2014) created 21 items to measure confidence (e.g., How confident are you that you could defend yourself in a dangerous situation?), sense of safety (e.g., How safe do you feel traveling to and from school when it is dark out), comfort saying no (e.g., If someone you are dating wants to do something sexually that you do not want to do, how comfortable are you saying ‘‘no’’?), self-advocacy (e.g., People will still like you even if you do not always agree with them.), and self-efficacy (e.g., You are confident you could deal with things that happen that surprise you.). Items were scored on a 4-point scale with higher scores indicating greater confidence, sense of safety, comfort, self-advocacy, and self-efficacy. A subsequent evaluation of IMPACT:Ability conducted by Wismar (2020) used the same self-report items without modification.
Self-Reported Skills
Warraitch and colleagues (2021) created a 10-item questionnaire to measure prevention skills learned from the CSAPI intervention. Children were asked how they would respond to various scenarios. Items were scored on a continuum from zero if (i.e., child complies with offender’s sexual lure) to 4 (i.e., child leaves and reports the situation to a guardian or trusted authority). Higher scores indicated greater prevention skills. Dryden and colleagues (2014) created 3 items to measure use of behavioral skills (called self-determination by authors). Participants were asked how often (from a lot to never) they engaged in a series of behaviors taught in the program (e.g., telling someone to stop if bothering you).
Observed Skills
In their evaluation of the CSAPI program, Kim (2016) used role-play scenarios facilitated by the program instructor and real-life sexual abuse scenarios facilitated by a new staff member or stranger to measure participants’ application of knowledge and skills gained from the program. Scenarios asked child participants to (1) remove clothing, (2) kiss, and (3) touch private parts. Participants’ behaviors were scored on a 0-4 scale. One point was awarded for the following behaviors: (1) does not agree to engage in or begin to comply with requested behavior, (2) verbal refusal, (3) leaves the situation, or (4) discloses the incident to a safe adult. All scenarios in the assessment consisted of requests made by a male adult.
In an evaluation of the Emma Untouchable program (Reis et al., 2022), researchers measured prevention skills using role play in which participants were shown a short video and then asked to act out their response as if it was a real situation. Responses were scored on a scale of 0–4. In situ probes were also used, in which an individual, unknown to the participant, acted as a perpetrator of CSA and the participant was expected to respond.
In their evaluation of the Growing Pains program, Sheppard (2006) developed a pre- and post-program checklist of personal development skills for teachers to complete. The checklist included topics on (1) social skills, (2) drug education, (3) relationships and sexuality, (4) protective behaviors, (5) grieving and loss, (6) human life cycle, and (7) personal hygiene. Teachers completed the evaluation for each child by completing a 5-point scale of always to never on items such as “recognizes threatening behaviors of others and acts accordingly” and “demonstrates knowledge of rights of self.”
Satisfaction
In their evaluation of the Creating Safe Environments program, Murray (2019) measured program satisfaction of students, parents, and teachers. The researcher used a modified version of the Red Cross RespectED questionnaire after the intervention was implemented. The measure included 5 questions that were rated on a scale of “yes”, “no”, “don’t know” and an opportunity to share additional feedback and comments.
Evidence of Efficacy or Effectiveness
Knowledge
In their RCT of the Emma Untouchable Program, Reis and colleagues (2022) found greater improvements in participants’ CSA prevention knowledge (as measured using a board game) for the treatment group compared to the control group. Differences were found immediately after the intervention and were sustained three months later with the exception of video vignettes. For the video vignettes, differences between treatment and control groups were found immediately after the intervention but not 3 months later.
In their quasi-experimental, pre-post evaluation of IMPACT:Ability, Dryden and colleagues (2014) found a significant increase in knowledge scores overall and a significant difference between groups in the change across time. Students in the intervention group had an increase in knowledge before and after intervention and children in the waitlist control group had a decrease in knowledge during this time. In their treatment only, pre-post assessment, Wismar (2020) found that participants identified more than twice the amount of resources after attending the IMPACT:Ability training but statistical significance of the results was not calculated in this evaluation.
In their treatment only, pre-post assessment, Warraitch and colleagues (2021) found a significant increase in knowledge scores after children completed the CSAPI program. In their treatment only, pre-post assessment, Abramson and Mastroleo (2002) reported that 21% of participants demonstrated increased knowledge of personal safety strategies after completing the Kid & Teen Safe program. In addition, 64% or more of participants could recall information specific to the program (e.g., identify anatomically correct private parts, identify good and bad touches, identify a known trusted adult).
In their quasi-experimental, pre-post evaluation of Healthy Relationships & Autism, Hart (2020) found a significant increase in knowledge acquisition and retention scores after student completed Module 1 of the program. Students in the treatment group showed an increase in knowledge before and after intervention and children in the control group had a decrease in knowledge during this time, the difference between the two groups was found to be statistically significant. However, 6 weeks post intervention, the treatment group showed decreases in knowledge scores.
Confidence/Self-Efficacy
In their evaluation of IMPACT:Ability, Dryden and colleagues (2014) found a significant difference between groups in the change across time in confidence in defending self in dangerous situation but not in knowing where to get help if being hurt. Dryden and colleagues (2014) found no difference between groups in change across time for feelings of safety or general self-efficacy scores.
Self-Reported Skills
Warraitch and colleagues (2021) found a significant increase in prevention skills after children completed the CSAPI program.
Observed Skills
In their evaluation of the Emma Untouchable program, researchers found between-group differences in preventive behavior observed during role play immediately after training but not 3 months later (Reis et al., 2022). The between-group differences after training, as observed during in situ probes, were statistically significant but the effect was lost due to protocol violations.
In their evaluation of IMPACT:Ability, Dryden and colleagues (2014) reported a significant increase in how often children showed self-determination in one of three behaviors - saying “stop” when someone bothered them.
According to the teacher-completed checklist, all students who completed the Growing Pains program showed improvements from pre- to post- program evaluation with greatest improvement in social skills, relationships and sexuality, and protective behaviors (Sheppard, 2006).
Satisfaction
In their evaluation of the Creating Safe Environments program, Murray (2019) found that majority of parents talked about the program with their children at home. A large majority of students found the program to be helpful and agreed that other should have access to it as well. Teachers’ believed the program to be helpful for students and would recommend it to others.
Limitations of Evaluations
Lack of Peer Review
Seven evaluations underwent peer-review (Dryden et al., 2014; Kim, 2016; Murray, 2019; Pask et al., 2016; Reis et al., 2022; Sheppard, 2006; Warraitch et al., 2021). Peer review is important for maintaining the rigor in scientific studies, ensuring quality control, validating findings, and identifying bias. Lack of peer review also limits dissemination of evaluation findings which, in turn limits collaboration and awareness-raising.
Bias in Randomized Trials
Only one study used randomization in the assignment of students to intervention or control groups. Reis and colleagues (2022) reported both intent-to-treat and “per protocol” analyses. That is, one set of analyses was conducted with participants in the group to which they were assigned regardless of their level of participation in the study (intent-to-treat) and another set was conducted with only participants who completed the study consistent with their group assignment. Regarding selection of participants, the evaluation included a female-only sample (Reis et al., 2022). Regarding the randomization process, it was unclear if the assignment sequence was random, if the assignment sequence was adequately concealed, or if there were baseline differences between intervention and control groups, which could suggest a problem with the randomization process.
Regarding bias from deviations in implementing the intervention, appropriate analyses were used to estimate the effects of assignment to intervention and adhering to the intervention. However, there were more protocol violations reported for the intervention group compared to control. Missing data was another source of potential bias. Data for the board game, verbal report, and role play were available for at least 65% of participants but data for in situ assessment was available for only 35%–40% of participants. Finally, it is not clear if data collectors were blinded to or aware of the intervention received by study participants and therefore if assessment of the outcome was influenced by knowledge of intervention received.
Bias in Non-Randomized Comparisons
One study used a quasi-experimental design that included a treatment group and comparison waitlist control (Dryden et al., 2014). Regarding bias from confounding, measurements of outcomes occurred only once before the intervention, limiting the authors’ ability to characterize pre-intervention trends and compare baseline equivalence of the groups. This study evidenced selection bias in that the intervention and control groups differed in proportion of race/ethnicities and age. Deviations from intervention protocol were not well-documented in the study and thus may have further impacted between-group differences. Finally, there was bias in measurement of the outcome variable. Although it is not clear in the study report, it seems as if there was approximately 12 weeks from baseline to follow-up for the intervention group (which included the intervention) and approximately 20 weeks between baseline and follow-up for the waitlist control group.
Bias in Cohort Studies
Four studies used a cohort or treatment-only design (Abramson & Mastroleo, 2002; Sheppard, 2006; Warraitch et al., 2021; Wismar, 2020). This limits researchers’ ability to attribute outcomes to the program intervention. These studies included several sources of bias from confounding. For example, all five studies conducted only one baseline assessment which meant authors could not characterize pre-intervention trends. Second, it is not clear how long before the intervention baseline assessments were conducted or how potential confounding events were addressed. Multiple studies included bias in the selection of participants. For example, in their evaluation of CSAPI, Warraitch and colleagues (2021) reported that all children for whom parents provided consent were enrolled but without reporting how many parents were approached or the recruitment rate. Differences in participants and non-participants may introduce bias in the outcome of interest. Sheppard (2006) evidenced similar bias in that only 14% of approached parents completed outcome assessments. Bias from missing data was difficult to assess because several studies failed report sample sizes included in analyses.
Measures with Unknown Validity and Reliability
Only one study (Dryden et al., 2014) reported indicators of validity or reliability of the measures used. Other studies had several sources of bias in measurement of outcomes. Abramson and Mastroleo’s (2002) evaluation of the Kid & Teen Safe Program used a single item assessment to evaluate knowledge acquisition. This question asked students what they would do if someone tried to hurt them. The term, “hurt” may be interpreted differently by children (e.g., hurt with words, hurt physically), reducing the reliability of this question and contributing to misleading results. A single item assessment makes it difficult to reliably evaluate the extent of knowledge and/or skill acquisition following a prevention education program.
Most of the evaluations had issues with internal and external validity such as the one conducted by Hart (2020). Sheppard’s (2006) evaluation of Growing Pains used a measurement tool that was completed as a proxy assessment by the program facilitators. Apart from minor adjustments when initially creating the measurement tool, there were no further attempts to establish validity and reliability. Facilitators’ role in completing the evaluation may have increased the likelihood of personal bias, negatively influencing study results.
Discussion
In the current context of increasing awareness of the victimization of children and youth with IDD, there are also increasing demands for the application of evidence-based best practices in prevention efforts. We identified thirteen victimization prevention education programs for children with IDD which we critically assessed against established best practice criteria for prevention and special education. Additionally, if there was an evaluation study conducted on the program, we critically appraised those. To our knowledge this is the first review that has identified and summarized the characteristics of victimization prevention programs for children with IDD and synthesized their evaluation findings.
There are very few existing victimization prevention programs for children and youth with IDD that have been evaluated with findings made available in scientific literature. This may be because there are few programs that have been designed or adapted for children with IDD, or it may be because programs for children with IDD exist but have not been evaluated to scientific standards. Either scenario is unsatisfactory given the heightened risk of victimization and poly-victimization for children with IDD (Sullivan & Knutson, 2000; Vanderminden et al., 2023; Wissink et al., 2015). Programs had been designed and delivered by small-sized community agencies in high income countries. We did not identify programs that had been implemented at scale; ideally, only those programs that have demonstrated efficacy should be scaled-up.
We examined program contents and methods against the best available evidence for victimization prevention education (Finkelhor et al., 2014; Gaffney et al., 2021; Walsh et al., 2018). We found that programs differed in the combinations of victimization types addressed, topics covered, and teaching strategies used. Predominant were programs focusing on prevention of child sexual abuse and bullying to the neglect of other victimizations such as physical abuse, emotional abuse, trafficking/exploitation, and online safety. It is clear from this review that there is a need for greater focus on poly-victimization prevention in programs for children and youth with IDD.
Priority should be given to adapting existing evidence-based prevention education programs specifically for children and youth with IDD and aligning unevaluated programs with the evidence base. Three clear examples of practices that require re-alignment with the evidence base were identified in this review. First, two programs taught ‘stranger danger’, a concept widely accepted as inappropriate because strangers are not the sole or predominant perpetrators of violence against children. Second, most programs did not capture parent and caregiver involvement, a strategy emphasized in violence prevention, generally. Parents and other caregivers can reinforce program messages, affirm skills, shape social norms, and increase supervision and monitoring (Gaffney et al., 2021; Gubbels et al., 2021; Mertens et al., 2020; Ortega et al., 2023) thereby mediating program effects. Caregiver involvement limited solely to informational sessions, however, is likely to be ineffective because these are typically poorly attended (Gaffney et al., 2021). Coordinated efforts in which children and youth, parents and caregivers, and school staff are trained are likely to be more effective (Hong & Espelage, 2012). Third, only six out of the thirteen programs incorporated inclusive practices in their development. IDD includes a broad range of cognitive and communication abilities. It is, therefore, vital to student learning to provide individualized instruction when possible. Using a variety of well-supported special education teaching strategies may also enhance and promote equity in student learning (Bešić et al., 2017; Winter & O’Raw, 2010). It is also important to note that in our search, no program had developed a logic model or theory of change. The development and evaluation of a comprehensive and effective prevention education program for children with IDD can be made more efficient with the use of a strategic plan of action (Stegemann & Jaciw, 2018).
We also examined program approaches against best practices for special education (Bastable et al., 2021; Räty et al., 2016; Schaafsma et al., 2015). Here, too, we found much scope for better aligning programs with teaching strategies that are most likely to be effective for children and youth with IDD. In particular, programs for children and youth with IDD should, at a minimum, pay attention to the use of concrete rather than abstract concepts and examples, incorporate adaptations for physical differences and communication augmentation, apply graduated developmental sequencing to support practice and performance, and use simple, clear and direct instructional language.
We critically appraised program evaluation study quality against the Administration for Children & Families Common Framework for Research and Evaluation (Administration for Children and Families, Office of Planning, Research and Evaluation, 2016). We found that existing programs were limited by several sources of bias. Primary sources of bias included participant selection, poor measurement of outcome, differences in treatment and control groups at baseline, and missing data. Measures were not strong either. In their evaluation of the Growing Pains program, for example, Sheppard (2006) measured student learning from teachers’ reports, not direct student assessment. Overall, evaluations were primarily focused on demonstrating feasibility of implementation and outcome assessments should be interpreted with significant caution.
Limitations
This review was limited to programs identified in study reports, published in English, and meeting our selection criteria. Due to the rapid nature of the search and selection process for this scoping review, it is possible that programs may have been missed in this process. Notwithstanding, in identifying and closely examining 13 programs and their evaluations, many valuable lessons have been learned to move the field forward as will be discussed below in future directions.
The programs identified in this scoping review were those with a set outline of content and sequence of lessons. Other approaches may also be effective but have not been tested with children with IDD. This review was also limited to programs that included a child-focused education component. Other programs exist that are solely adult- rather than child-focused. These programs target adults who work with children with IDD. For example, Adaptive Sports Abuse Prevention
We included only programs that were developed or adapted specifically for children with IDD. Therefore, we excluded two programs designed for children without IDD but implemented without adaptation noted with children with IDD. One well-established program, created by Wurtele, (1986), is known as the Behavioral Skills Training (BST) Program, and later revised and known as Body Safety Training (BST). The program was designed for use with children aged 3–8 years. In a randomized controlled trial, BST was delivered to adolescents with IDD, however because the study report did not explicitly state if or how the program had been adapted for youth with IDD, it was excluded (Lee & Tang, 1998). Similarly, Kelly and colleagues (2023) implemented the Speak out, Stay Safe program with a sample of children with “special educational needs and disabilities” as part of a larger trial with children without these special needs (United Kingdom). Although, the researchers noted adaption of the evaluation procedure, they did not note any changes to the program and therefore this study was excluded from our analysis (Kelly et al., 2023).
We included programs and evaluations that had not undergone peer-review. Limiting to peer-review publications would boost our ability to make conclusions about the effectiveness of the reviewed programs. However, because the literature on school-based prevention education programs for children with IDD is so narrow, and several programs never undergo evaluation yet are used widely, we felt it prudent to describe what programs exist regardless of peer review status.
Because two coders reviewed and discussed all programs and evaluations, we did not calculate interrater reliability. Finally, our synthesis of evaluation findings was limited to a narrative summary. Future quantitative meta-analysis of program effects will only be possible when more programs are evaluated using rigorous experimental methods.
Future Directions
Given that children with IDD are at high risk of being victims of violence, comprehensive programs designed for these children are needed. It is also important that these programs are developed keeping in mind the unique learning needs of these children. As these programs are created, attention should be placed not only on content, but also on teaching strategies that meet the needs of this population.
Children with IDD are a heterogeneous group of students with varied characteristics that may not apply equally to all of them (Hronis et al., 2017). Children who are profoundly intellectually challenged or who have multiple disabilities will need different accommodations than children with mild IDD that in many ways may be indistinguishable from typical children. Children’s unique needs should be assessed and individualized instruction should be provided when possible. Program developers should also keep in mind that children with IDD tend to have a desire to please and a gullibility born out of naiveté that increases their risk of abuse (Snell et al., 2009). Safety programs for children with IDD should focus on differences in cognitive processes (e.g., sensory registration, perception, appraisal, decision making, memory, concept formation, perceptual organization, language; Bertelli et al., 2018). Teaching strategies for children with IDD should address poor memory, attention problems, difficulty generalizing knowledge, and in some cases deficits in receptive and expressive language (Hronis et al., 2017). Although the content of safety programs should be as comprehensive as that of typical children, program developers must attend to the teaching strategies (e.g., scaffolding, reciprocal teaching, cooperative learning, positive behavioral supports, motivation, as well as assistive and instructional technology) needed for children with IDD (Kirk et al., 2015).
Content of safety programs should be comprehensive for children with IDD as well as children without IDD. Families, caretakers, educators, service providers, and law enforcement should be consulted by program developers to identify the breadth of topics that need to be covered to prepare children to protect themselves from the numerous types of violence to which children may be exposed. After components of the curriculum are developed, aligned assessments may be developed and validated. By so doing, quality programs may be developed, implemented, and evaluated.
It is also clear that the current and future programs that may exist need to be more thoroughly evaluated to determine their effectiveness. Although most scholars agree that instruction alignment with assessment is important (Polikoff & Porter, 2014), there does not appear to be agreement on the content of safety courses and, consequently, there are no validated measures of safety programs. A new generation of prevention programs is needed to address individual, relational, and contextual factors that enable poly-victimization.
Conclusion
Although most professionals serving children with IDD agree that quality safety education should be provided to children with IDD, much work remains to be done. This disparity in safety education needs to be rectified so that the risk to these vulnerable children can be reduced. It is not, however, enough to intuitively produce and assess these safety programs for children with IDD. For resources to be utilized well, professionals need to work collaboratively with stakeholders to co-design the most effective safety programs for children with IDD. These evidence-based practices should be of value to practitioners and educators preparing children with IDD to interact with people within the community.
Footnotes
Acknowledgments
We thank LouAnne B. Hawkins for her contributions to collecting data for this review.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
