QOL Grant Supporting Individuals with ASD Transitioning to Adulthood

 

Melissa Tovin, PT, MA, PhD is Professor and Director of Post-Professional Clinical Advancement in the Department of Physical Therapy within the Dr. Pallavi Patel College of Health Care Sciences.

Dr. Tovin received a Quality of Life (QOL) grant for her project titled “Project REACH – Recreation, Engagement, Access, Community and Health for Young Adults with Autism Spectrum Disorder.”

 

Tell me about your recent grant-funded project.

The project emerged from a critical need: Young adults with autism-spectrum disorder (ASD) are a rapidly growing segment of our community. We know that approximately 70,000 to 112,000 children with ASD enter adulthood (turn 18) each year. Transition to adulthood is a process that spans several years—ages 18 to 29—and is particularly challenging for adults with ASD because they simultaneously exit pediatric medical, developmental, and school-based services. They also lose access to family health insurance at age 26. Emerging adults with ASD also face health disparities including diminished access to services, greater risk for physical inactivity, being overweight and obesity, heart disease, mental disorders, and persistent sleep disturbances. There is also evidence to support high levels of service disengagement and inadequate transition services and supports. All of these factors contribute to diminished quality of life for these individuals and their families.

Our project focused on our local community here in Broward County, to support transitioning adults, meet their wellness needs, and help them integrate into existing programs designed to foster healthy lifestyles. Project REACH (Recreation, Engagement, Access, Community, and Health for Young Adults with Autism Spectrum Disorder) addressed this need by bringing a team of specialists and community partners together for a common aim. Together, we worked with the emerging adults with ASD and their families to improve their health-related quality of life by reducing social isolation, increasing participation in fitness activities, and improving their knowledge of healthy eating.

A secondary aim of this project was training future health professionals to effectively communicate with this population and understand their unique needs. Thirty students received formal training through REACH to facilitate engagement in physical activity and promote the development of social connections and friendships among the adults with ASD and family members. Students were from physical therapy, occupational therapy, speech language pathology, osteopathy, and athletic training. Following the training, the students were matched to REACH participants, 1-to-1, to support those individuals throughout the project activities. Activities included:

• 12-week community-based intervention held at a local Broward County park. The intervention consists of physical activity and exercises targeting muscle strength, endurance, balance, and coordination building.
• Wellness community event to optimize sustainability of new healthy behaviors. For this activity, community programs, organizations, and businesses were invited to the REACH Wellness Fair to discuss their offerings and meet project participants. Students assisted REACH Participants during the fair, to identify programs of interest and develop a Wellness Plan for sustaining their wellness habits after REACH ended.

 

Who is working with you on this project?

• Annabel Nunez-Gaunaurd, PhD, is a Co-PI on this project and a researcher/physical therapist from Florida International University.
• Carole Zangari, Ph.D., CCC-SLP, BSC-CL, ASHA Fellow, is another Co-PI. She is a Professor of Speech Language Pathology at NSU and was able to bring expertise in speech and help students foster the communication skills needed in order to understand the communication issues that people with autism have.
• Elise Bloch, Ed.D., OT/L, Associate Professor in the Occupational Therapy Department at NSU also worked with us to develop and implement REACH.
• Community partners: Special Olympics of Broward County Florida, Circle of Friends, Y.M.C.A., and other independent service providers

 

We also included student research assistants in the project and on the grant. There were eight research assistants. We also recruited 30 students from varying colleges at NSU to act as individual health and wellness buddies to the participants.

 

How does this grant intersect with your work at NSU?

As future health professionals it is important for our students to understand professional collaboration to support transition care and wellness needs across the lifespan for individuals with autism and other developmental disabilities. I try to engage my students in research like this so they can get that experience. Also, I have built my research agenda around transition healthcare issues experienced by individuals with ASD.

 

What were the project outcomes, and what’s next?

We found that the participants had improved physical fitness measures and physical activity levels after participating in REACH. We also observed that many participants needed support from their caregivers to continue to motivate them to participate in the at-home activity assignments. Additionally, through this program we were able to identify significant barriers to participation in community programs and identify future research needs.

In the future, we would like to promote adoption of the REACH model in other regions as partnerships between universities and local partners. That said, I think what’s become clear to me and to my research team is that we need to actually take a step back and look at health service access and utilization in this population first. There have been some studies in children with autism and health service access and use but not in the adult population. It is critical to understand what services are being accessed and what are the specific needs of this population before we can adequately serve their needs. In fact, in December of 2023 I received a $40,000 grant from the Foundation for Physical Therapy Research for this exact purpose. The project is called: “Access and utilization of rehabilitation health services among emerging adults with autism spectrum disorders” which will recruit individuals through a national autism genome research database.

Another project that has evolved directly from this QOL project is called “Combining wearable technology and telehealth peer-counseling to promote physical activity and healthy lifestyle behaviors for adolescents and young adults with autism spectrum disorder.” This project is funded by the Robert E. Dooley Trust for Autism Endowment Fund, which awarded $46,000 to support this outreach program. So far, we have enrolled families in Broward, Hillsboro, Miami-Dade, Orange and Palm Beach counties in Florida. Please see the previously published Dooley Trust Award article for a detailed description of this funded project.

 

What advice do you have for other grant seekers at NSU?

The most important advice that I could share is how important collaboration is in research. It’s really important to make connections, not just across programs and colleges within NSU, but also to reach out to researchers at other institutions because that helps us to strengthen our projects, and it builds capacity, resources, and connections for future research.