Importance: Rates of occupational therapy service utilization among people with autism spectrum disorder (ASD) or intellectual disability (ID) have not been explored in population-based samples. Objective: To describe occupational therapy services delivered to Medicaid-eligible persons younger than age 65 yr identified as having ASD, ID, or both and to evaluate demographic factors associated with occupational therapy service utilization in this population. Design: Retrospective, case–control, cohort study using claims records from Medicaid Analytic eXtract files (2009–2012). Setting: Data from all 50 states and Washington, DC. Participants: Beneficiaries identified as having ASD only, ASD+ID, or ID only who were younger than age 18 yr (N = 664,214) and ages 18–64 yr (N = 702,338). Outcomes and Measures: We analyzed Current Procedural Terminology^® and Healthcare Common Procedure Coding System procedure codes, Medicaid Statistical Information System type of service codes, and Center for Medicare & Medicaid Services provider specialty codes. Results: Only 3.7% to 6.3% of eligible adult beneficiaries received occupational therapy; in contrast, 20.5% to 24.2% of children received occupational therapy. Significant predictors of service use varied by group; however, differences by race–ethnicity, eligibility on the basis of poverty, and geographic location were observed. Among children, the most frequent billing code was for “therapeutic activities” (43%–60%); among adults, it was “community/work reintegration training” (29%–39%). Conclusions and Relevance: Billed procedure code patterns do not consistently reflect the unique occupational focus that occupational therapy providers deliver to people with developmental disabilities. Disparities in occupational therapy receipt warrant further attention to understand the social and structural factors affecting service delivery. What This Article Adds: Occupational therapy services paid for by Medicaid are used more frequently by children with ASD and ID than by adults with these diagnoses. Greater understanding of the intersectional factors that drive service delivery and disparities is needed.

Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. Peer mentoring (PM) is an evidence-based approach that may support young adults with intellectual and developmental disabilities and co-occurring mental health conditions (YA-IDD-MH) to cope with MH challenges. Feasibility testing of PM suggested that YA-IDD-MH learned, enjoyed PM, and had increased self-efficacy for managing emotions, but smaller changes in MH symptoms, suggesting a longer intervention period, may be needed. OTs may utilize peer-delivered interventions as a client-centered approach to support YA-IDD-MH. Primary Author and Speaker: Ariel E. Schwartz Additional Authors and Speakers: Tara Loeper Contributing Authors: Melissa Levin

Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. This study describes adults with intellectual and developmental disabilities (IDD) in the acute-care hospital setting and identifies differences in their experience compared with those of patients without IDD. Comparative analysis between the two samples revealed differences in the length of stay, insurance provider, discharge environment, and number of OT visits per day. This study affects the field of OT by increasing awareness of the utilization patterns of health care services for patients with IDD. Primary Author and Speaker: Samantha Conrad Additional Authors and Speakers: Molly Bathje, Matthew Medick, and Molly Ross Contributing Authors: Louis Fogg

Date Presented 04/9/21 Development in the first years of life is often characterized by a child’s aptitude to complete discrete tasks, such as walking or stacking blocks. True participation requires the child to incorporate skills into everyday activities. This presentation will provide an overview of the Infant Toddler Activity Card Sort, the initial psychometrics, and a Rasch analysis. Primary Author and Speaker: Catherine R. Hoyt Contributing Authors: Ching-Fan Sheu

Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. Patient-reported outcome measure (PROM) adoption with youth with intellectual and developmental disabilities (IDD) faces obstacles but is important for client-centered care. We collected data from pediatric practitioners who work with youth with IDD (N = 113) about factors influencing PROM adoption and the frequency of PROM use by age. Results suggest evidence, time, and accessibility are important factors for PROM adoption, and clinicians infrequently use PROMs with this population. Primary Author and Speaker: Kimberly Greenberg Additional Authors and Speakers: Ariel E. Schwartz Contributing Authors: Jessica Kramer

Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. The participants were able to identify adaptive behaviors during the intervention and improved and transferred their abilities to other daily contexts 1 month after the intervention. The results highlight the efficiency of a video-modeling-based intervention for adults with mild to moderate intellectual and developmental disabilities, for improving their social and work-related behaviors. This may reinforce the development and adaption of the intervention to their unique needs to support successful integration into the vocational world. Primary Author and Speaker: Sharon Zlotnik Additional Authors and Speakers: Yfat Ben Refael, Eynat Gal Contributing Authors: Patrice Tamar Weiss

Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. Supported decision making is an emerging practice that OTs can use to promote participation, positive transition, and self-determination for people with intellectual and developmental disabilities (IDD). This presentation will report research studying the experiences of adults with IDD using supported decision making and discuss opportunities for OT intervention. Primary Author and Speaker: Evan Dean Additional Authors and Speakers: Brad Linnenkamp

Date Presented 04/8/21 People with developmental disabilities (DD) often face transportation challenges that impede community participation. The purpose of this study was to examine the impact of a comprehensive intervention program on the travel skills of individuals with DD to increase community mobility. Primary Author and Speaker: Elizabeth Pfeiffer Contributing Authors: Allison Smith

Date Presented 04/8/21 This study describes the results of usability testing of activities designed to address the gaps and barriers to sexual health education (SHE) for clients with intellectual and developmental disabilities (IDD). Recommendations from stakeholders were incorporated, and the feasibility of a 5-week SHE program was evaluated. OTs can use the results of this study to address significant sexual and reproductive health disparities currently faced by individuals with IDD. Primary Author and Speaker: Elizabeth Koss Additional Authors and Speakers: Yong-Fang Kuo, Kenneth Ottenbacher

Date Presented Accepted for AOTA INSPIRE 2021 but unable to be presented due to online event limitations. We will share methods and lessons learned from engaging stakeholders in five U.S. regions and connecting them nationally to build research capacity and partnerships. Research capacity building is aimed at identifying stakeholder-driven priorities and outcomes in relation to organization-level OT interventions and how these interventions facilitate community participation and ultimately affect health and well-being of individuals with intellectual and developmental disabilities. Primary Author and Speaker: Tracy Jirikowic Additional Authors and Speakers: Roxanna Bendixen,Teal Benevides, and Roger Ideishi Contributing Authors: Robert Smythe, Anna Perng

Importance: Sexuality is an important part of the human experience. However, little is known about the experience of sexuality from the perspective of adults with intellectual and developmental disabilities (IDD). Objective: To review evidence about the lived experience of sexuality among adults with IDD to inform future research and practice. Data Sources: We located articles using search terms summarized into three categories: intellectual disability, sexual activity, and feelings/opinions. Articles were indexed in the following electronic databases: CINAHL, Scopus, PubMed, and PsycINFO. Study Selection and Data Collection: Arksey and O’Malley’s methodology was used to review scientific literature published between 2008 and 2018. The studies were in English, were located in peer-reviewed journals, and described the experience of sexuality from the perspective of people with IDD or observations of expressed sexuality. Findings: Seventeen articles met inclusion criteria. Four main themes emerged: intimate relationships, oppressed sexual activity, knowledge, and identity. Findings indicate that sexuality is a part of the lives of many adults with IDD, regardless of their engagement in sexual activity. Conclusions and Relevance: Barriers to expression of sexuality exist for people with IDD. Some of these barriers are internal, although many are external. The results provide support for addressing sexuality among adults with IDD. What This Article Adds: This review provides evidence to support occupational therapy practitioners in including sexuality as a part of their holistic view of clients and as an area for advocacy.

Importance: Adults aging with intellectual and developmental disabilities (IDD) continue to face barriers to participation in meaningful occupation; moreover, the increased life expectancy of adults with IDD intensifies the need for age- and environment-specific support. Objective: To map and categorize transdisciplinary literature on environmental modifications and supports for adults aging with IDD. Data Sources: Studies published between January 1, 2000, and January 1, 2019, identified through PubMed and Scopus. Study Selection and Data Collection: Eleven articles met the inclusion criteria and contained information specific to occupational participation based on environmental modification (e.g., physical space, technology, universal design, type of living setting), social supports (e.g., family members, caretakers, peer groups, health care professionals, policies, organizational infrastructure), or both and adults age ≥35 yr with IDD. Findings: Eleven studies met the criteria for this scoping review. Thematic coding was used to examine the articles within one or more themes: definition of need, environmental risk and assessment, environmental setting, intervention and program planning, use of technology, and bureaucracy. Conclusions and Relevance: This review highlights collective and individual outcomes in the areas of assessment, intervention, and advocacy. Further research is needed within the scope of occupational therapy and disability studies that examines environmental factors and participation outcomes in this population. What This Article Adds: The authors define the interconnectedness of adults aging with IDD and environmental factors, identify barriers to participation, and guide occupational therapy practitioners’ logic on how to positively affect environmental change and supports through intervention.

Importance: The number of adults with intellectual and developmental disabilities (IDD) seeking treatment in non–IDD-specific health care settings is growing. Little is known about how adults with IDD use health care services in specialty settings, including occupational therapy services. Objective: To describe adults with IDD in hospitals and identify differences in utilization patterns compared with patients without IDD. Design: Descriptive and correlational designs were used. Participants: Data were obtained from Vizient (Clinical Data Base/Resource Manager™), a national database of administrative discharge abstracts for adults admitted to hospitals for an orthopedic procedure. From this sample, subsamples of (1) patients diagnosed with IDD and (2) an age- and gender-matched sample of patients without IDD were identified. Results: The study cohort with IDD experienced longer lengths of stay, t(2821.5) = −14.2, p < .001; were more likely to have Medicare coverage, χ²(3, N = 8,472) = 1,170.38, p < .001; and were more commonly discharged to subacute or skilled nursing facilities, χ²(5, N = 8,472) = 1,033.60, p < .001. Differences in occupational therapy services were also noted. Conclusions and Relevance: Despite similarities in orthopedic procedures, participants with IDD had different use patterns than those without IDD. Differences may be attributed to varying client factors and contexts. The results also indicate that practitioners in non–IDD-specific settings should expect to encounter clients with IDD. Occupational therapy practitioners have an opportunity to be leaders in adapting treatment protocols and providing education to caregivers and health care providers on behalf of people with IDD. What This Article Adds: This article provides novel information about a population that is known to experience disparities in health outcomes. It offers a basis on which future research can build to improve health care delivery and occupational therapy interventions to improve outcomes.

Importance: People with intellectual and developmental disabilities (IDD) express a clear interest in intimate relationships but face many barriers to receiving sex education (SE) that would support their engagement in these relationships. Objective: To understand barriers to, the context of, and recommendations for SE for people with IDD. Design: Qualitative study design with interviews and focus groups with four key stakeholder groups. Data were analyzed using a constant comparative approach. Participants: Participants were 8 youths with IDD, 9 parents, 12 health care providers, and 8 educators. Results: Four barriers to SE were identified: (1) values and cultural issues, (2) parental attitudes toward their child’s sexuality, (3) a lack of organizational policies and standards, and (4) limited professional education or societal biases. These barriers contribute to a SE context primarily initiated by people with IDD or provided reactively. The participants recommended proactive, formal SE provided by multiple stakeholders throughout adulthood. Conclusions and Relevance: Stakeholders should advocate for policies, standards, and additional training for parents, educators, and health care providers to support SE for people with IDD throughout adulthood. What This Article Adds: Barriers to SE contribute to the current context in which SE is shared with people with IDD. Stakeholders can advocate for policies, standards, and training to overcome these barriers and support recommendations for proactive, formal SE provided by multiple stakeholders through adulthood.

Importance: Occupational therapy practitioners should understand the barriers faced by young adults with intellectual and developmental disabilities (IDD) who are attempting a successful transition to postsecondary work, higher education, community and social activities, and living opportunities so they can better advocate for them and tailor their involvement in the transition process. Objective: To explore the lived experience of parents of adolescents with IDD participating in the transition process. Design: Phenomenological design. Setting: Community-based setting with interviews occurring face-to-face in the participants’ home or via telephone. Participants: Eleven parents of adolescents and young adults (ages 16–22 yr) with IDD. Outcomes and Measures: Semistructured interviews focusing on parent and family experiences with the transition process. Results: Seven themes emerged from the data representing parent perceptions related to the use or lack of person-centered practices, needing more communication from the team, frustration with being the driving force of progress, feelings of defeat, gaps between programming options, positive team collaboration, and planning for the future. Conclusions and Relevance: Parents identified person-centered planning, guidance from school staff, and resource sharing as desired practices in the transition planning process. The outcomes indicate that some aspects of the transition process have not changed in several decades. What This Article Adds: Occupational therapy practitioners are optimally positioned to remediate transition issues; therefore, it is essential that they assert their integral role in the transition planning process to increase self-determination and quality of life for all adolescents and young adults with IDD.

Importance: Adults with intellectual and developmental disabilities (IDD) are twice as likely as their peers without disabilities to have had a physical exam in the past year; however, as a result of challenging behavior during office visits, they are significantly less likely to have received recommended health screenings. Challenging behaviors in clinical settings have been identified as a barrier to providing adequate care for this population. Objective: This scoping review examined the within-session effects of multisensory environments (MSEs) on people with IDD to determine the clinical utility of MSEs for this population. Data Sources: Studies published between January 1, 2000, and August 1, 2018, were identified using Summon and Google Scholar. Study Selection: Studies were included in the review if they systematically collected and reported data on within-session effects of an MSE intervention on people with IDD. Findings: Thirteen studies met criteria for this review: 4 with Level I evidence, 2 with Level II evidence, 3 with Level III evidence, and 4 with Level IV evidence. Studies examined the effects of MSEs on maladaptive behaviors, positive behaviors, distress and discomfort, activity and alertness states, and cost of care for people with IDD. Conclusion and Relevance: Preliminary support was found for the use of MSEs in clinical settings to reduce anxiety and challenging behaviors in patients with IDD during clinical care. Further research is needed to determine the efficacy of MSEs for producing the effects described in this review. What This Article Adds: The findings support the potential of MSEs as a tool that occupational therapy practitioners can use to support their clients with IDD who have sensory sensitivities in clinical settings. This article also highlights a multidisciplinary approach whereby medical providers and occupational therapy practitioners could work together in nontraditional ways to support this population.

Date Presented 04/04/19 This study investigated the effects of the Alert Program® sensory strategies on communication, social interaction skills, and occupational performance of adults with intellectual and developmental disabilities (IDD). Significant positive pre- to postchanges were found: communication and interaction skills improved (p = .043) and demonstrated improvements in occupational performance (p = .046). Primary Author and Speaker: Jennifer Allison Additional Authors and Speakers: Mary Shotwell, Benjamin Keeling, Robert Simon

OBJECTIVE. A reliable, valid, and readily usable method of measuring coping is essential for occupational therapy practitioners and researchers working with children with developmental disabilities. The aim of this study was to examine evidence for the construct validity and internal and test–retest reliability of the Coping Inventory (CI), a 48-item survey designed for use with children. METHOD. School staff (N = 39) completed CIs for 79 students with developmental disabilities age 5–13 yr (mean = 8.0, standard deviation = 2.0) who were primarily boys (n = 52; 68%) with autism spectrum disorder (n = 40 of 47 diagnoses provided). We used Rasch analysis to examine construct validity, internal reliability, and possible redundancy of items and intraclass correlations, Pearson correlations, Bland–Altman plots, and t tests were used to examine test–retest reliability. RESULTS. Rasch analysis provided evidence of construct validity: All items correlated positively with the overall measure; data from 94% of items conformed with Rasch expectations, and the items form a logical hierarchy. Intraclass correlations revealed an average coefficient of .96, providing evidence of test–retest reliability. CONCLUSION. The CI demonstrated good evidence for construct validity and internal and test–retest reliability. Redundancy of items suggests that some items could be eliminated after further research.

Importance: Children with autism spectrum disorder (ASD) and other developmental disabilities (DD) commonly display unusual responses to sensory input. Previous work has suggested concurrent associations linking sensory features with aspects of family functioning, including activity participation and caregiver strain. What is unknown, however, is the extent to which sensory features affect family functioning over time, as well as the influence of received services on these relationships. Objective: To assess hypothesized longitudinal associations between sensory features and family functioning and examine interactions by group and service usage (i.e., educational and therapy services). Design: Multigroup longitudinal observational study. Setting: Community. Participants: A volunteer sample of 81 children (50 with ASD, 31 with DD; 76% male), ages 2–12 yr, and their caregivers participated in assessments at two points, 3.3 yr apart on average. Outcomes and Measures: Key measures included the Sensory Experiences Questionnaire, Sensory Profile, Sensory Processing Assessment for Young Children, Tactile Defensiveness and Discrimination Test–Revised, Caregiver Strain Questionnaire, and Home and Community Activities Scale. We also measured the amount of time children received educational and therapy services. Results: Regression analyses confirmed long-term associations linking sensory features with aspects of activity participation and caregiver strain in this population; group and service usage interactions were also identified. Conclusions and Relevance: Sensory features can affect the everyday experiences of both children and caregivers. It is important for practitioners to understand the potentially enduring effects of children’s sensory features on family functioning so as to begin to identify supportive interventions with more optimal long-term effects.

OBJECTIVE. Medicaid Home and Community-Based Services (HCBS) 1915(c) waivers are the largest provider of long-term services and supports for people with intellectual and developmental disabilities (IDDs). In this study, we explored how HCBS IDD waivers projected providing occupational therapy services in Fiscal Year (FY) 2015. METHOD. Medicaid HCBS IDD waivers across the nation gathered from the Centers for Medicare and Medicaid Services were qualitatively and quantitatively analyzed to determine how they projected providing occupational therapy services in terms of service expenditures and utilization. RESULTS. In FY 2015, $14.13 million of spending was projected for occupational therapy services of 7,500 participants. However, there was large heterogeneity across states and services in terms of total projected spending, spending per participant, and reimbursement rates. CONCLUSION. Comparisons across states strengthen the profession’s ability to assert the value of its services. These findings can help identify best practices and can advocate for the refinement of state occupational therapy programs.