Town Hall: Health and Health Service Use in Transition Age Youth with Developmental Disabilities
What is it about?
Persons with developmental disabilities (DD) are one of the most vulnerable populations because of their complex health needs and because of the challenges they face in accessing health care services. Youth and young adults with DD encounter particular challenges as they transition into, and try to navigate, the adult health care system.
In December 2014, researchers leading the study of transition age youth with DD in Ontario, hosted an interactive Town Hall to discuss findings about:
- Health service use patterns of youth with DD over the years they transition into the adult services system
- How young adults with Autism Spectrum Disorder (ASD) differ in their health and service use compared to others without ASD
What did we learn?
Health and health service use
The researchers found that young adults (age 18-24) with DD are more likely to be male, more likely to have a psychiatric diagnosis and have overall worse health compared to those without DD. Young adults with DD are most frequently seeing family physicians or psychiatrists around the ages 17-18. Emergency department and psychiatric hospitalizations also increase around these ages.
Town Hall participants discussed reasons that might explain these patterns, including:
- A lack of readiness and support for developmental and social milestones, such as increased identification with peers and transitions from school to community
- Need for supports to manage the presence of difficult behaviours that either emerge during the transition age years or that become more pronounced
- The absence/inaccessibility of community supports that results in transition age youth and their families turning to more accessible health care services - often emergency care
- System requirements to access social and financial supports that require recent assessment and/or diagnosis of DD from a health care professional
Do you have any other suggestions? Please feel free to contact the researchers. (Contact details below).
Young adults with autism spectrum disorder (ASD)
The researchers found that young adults with ASD are more likely to be male compared to both those with other DDs, and to those with no DD. Young adults with ASD are also more likely to have psychiatric diagnoses than those without DD. They are less likely to visit an emergency department, but are more likely to have psychiatric emergencies and psychiatric hospitalizations than peers without DD.
Town Hall participants provided the suggestions for future research, including:
- Study transitions in the education system and the roles that schools might play in supporting youth and young adults with DD through the transition years
- Comparing patterns of service use for transition age youth with DD with and without family doctors
- Patterns of substance use among transition age youth with DD
- Developing and implementing training for medical professionals
For more suggestions please read the Town Hall report.
Watch a video of this Town Hall
To watch a video recording of the Town Hall on health and healthcare usage in youth with developmental disabilities please click on the picture below.
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Town Hall Report
A Town Hall report with more details and discussion on research findings is available for download. For more information, please feel free to contact the researchers.
Barry Isaacs is Director of Research, Evaluation and Education at Surrey Place Centre, Toronto. He received his PhD in psychology from York University in 2004 and has been working in the field of developmental disabilities for over 20 years. His research interests include health and healthcare for people with developmental disabilities, health and social service evaluation, quality of life for people with developmental disabilities and their families, and issues in medical education.
Jonathon Weiss (PhD. C.Psych) is an Associate Professor who works with children, adolescents, and adults with developmental disabilities. He holds the Chair in Autism Spectrum Disorders Treatment and Care Research, funded by CIHR in partnership with Autism Speaks Canada, Health Canada, NeuroDevNet, the Sinneave Family Foundation, and CASDA.