Community Participation, Service Needs, and Health Outcomes Among Adults with Autism
Abstract
The proposed research will focus on a large group of adults with autism spectrum disorder (ASD) and generate comprehensive data on their community participation preferences and experiences, with the goal of improving how services that support community engagement are designed and delivered. Meaningful participation in the community is a core component of living a healthy life. Studies show that it is connected to increased feelings of well-being, improved quality of life, and better self-reported health, as well as decreased feelings of social isolation and reduced feelings of depression and anxiety. People with ASD may experience unique barriers to community participation due to social and communication differences as well as logistical barriers such as transportation. To date, very little research has gathered information directly from adults with ASD about their experiences or service use; as a result, we lack information to ensure that policies, systems, and programs are best set up to meet their needs. This information is urgently needed, as new federal policy directives are leading to revision of community-related services covered by Medicaid, a key funder of services for adults with ASD. The proposed study also directly responds to five of the FY19 Autism Research Program Idea Development Award Areas of Interest. By including young adults, we will allow investigation of the role of community participation in the transition to successful independent living. By comparing community participation experiences and preferences among adults who transition to independent living to adults who have not made this transition, we will identify services that make a difference in achieving this milestone. We will collect new data on community participation over time to investigate how community participation impacts quality of life among adults with ASD; this will include measuring health outcomes and tracking individual characteristics such as geographic relocation. Our findings will allow us to improve resources and training for healthcare and direct support providers to enhance their understanding of community participation and health outcomes and boost their skills in supporting community participation. Finally, the proposed study will improve access to services across the life span by describing barriers to and facilitators of community participation and by generating policy and program recommendations. The proposed research study is innovative in several ways. First, we will survey adults who previously participated in the Pennsylvania Autism Needs Assessment (one of the largest studies of adults with ASD to date) and agreed to be contacted for future research. This efficient strategy for recruiting a diverse group who live in rural, urban, and suburban areas will allow us to observe differences across race/ethnicity, geographic location, gender, and socioeconomic status. Second, we will gather information to fill major gaps in our understanding of how to maximize the benefits of community-related services. By reporting on community participation experiences and preferences, we will provide the first evidence regarding the types of community activities adults with ASD are participating in, the community activities they value, and what additional services and supports they may need to increase access and participation. Third, we will use unique methods to conduct data analyses, linking Medicaid claims and survey data. This will allow us to evaluate service use among adults with ASD and will point to service development opportunities that can maximize community integration, including identifying service needs to ensure supports in the community are available and delivered. By identifying community participation service use, experiences, and preferences among adults with ASD for the first time, we will lay the foundation for improving services and enhancing successful community integration. We will also con
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Mar 10, 2021
- Source ID
- W81XWH2010435
Entities
People
- Lindsay Shea
Organizations
- Drexel University
- United States Army