People with intellectual and developmental disabilities (ID/DD) may need extra support or skill-building to live full, meaningful, and connected adult lives. This can make the transition to adulthood very complex for youth with ID/DD and their families.
Transition is the change from child to adult systems and services. Transition typically takes place between the ages of 12 and 26 years.
Integrated transition planning is when youth with ID/DD, their family members and service providers thoughtfully map out and prepare for the youth’s life as an adult. It integrates planning for the youth’s education, work, and healthcare to achieve their goals as an adult. Ideally, this planning occurs throughout childhood with more focused planning as the child becomes a teen.
The Waisman Center UCEDD was awarded a five-year grant to help improve the transition to adulthood systems for individuals with autism in Wisconsin as part of a nationwide project called the Transition for Youth with Autism and/or Epilepsy Program which is funded through the Health Resources and Services Administration. The Waisman Center UCEDD is one of 4 autism demonstration project sites across the country. Another 7 sites are carrying out epilepsy demonstration projects.
The aim of this five-year grant (Sept 2024 – Aug 2029) is to improve the infrastructure and supports available to help individuals and families navigate the transition to adulthood. The target population is youth with autism between the ages of 13 and 26 who have co-occurring conditions and higher family support and coordination needs.
The grant team will use several different strategies to help more individuals transition successfully to the adult systems and build more independent lives. These systems include, but are not limited to, post-secondary education, employment, community integration, independent/daily living, and healthcare. Initially, the team will be working in one community in Wisconsin (Janesville) using family navigation, training and technical assistance, new transition care frameworks, and more to pilot new transition to adulthood supports. The ultimate goal is to put together innovative resources that individuals and families can use that are scalable and sustainable in Wisconsin and beyond.
Individuals with autism and their families will also be an important part of the resource development stages. When designing systems and supports for others, it is crucial to include people with autism and their families to determine if the resource being designed will ultimately be helpful or not. Their input and feedback will be a core component of the design process to ensure that the system being put in place will be available how, when, and where the individuals and families need it.
**The Health Resources and Services Administration (HRSA), Department of Health and Human Services (HHS) provided financial support for this website. The award provided 100% of total costs and totaled $450,000. The contents are those of the author. They may not reflect the policies of HRSA, HHS, or the U.S. Government