By Charlene N. Rivera-Bonet | Waisman Science Writer
A big part about turning 18 is planning ahead and setting yourself up for success in adulthood. Whether that be what to study, where to go to college, or deciding to start in the workforce right away, these choices alone can be overwhelming. For youth with intellectual and developmental disabilities (IDD) although the list might look similar, it comes with extra steps. For youth with IDD, the transition to adulthood may also mean changes in resources, supports, advocacy, and healthcare systems that can be challenging to navigate without advanced planning and knowledge.
Individuals with IDD and their families may need some extra support or skill-building to help prepare for this transition and plan for the future, but even figuring out where to search for support might be an overwhelming task. The Wisconsin Integrated Transition Planning Project (WITPP) from the University Center for Excellence in Developmental Disabilities (UCEDD) at the Waisman Center aims to improve transition planning for Wisconsin youth with IDDs in an integrative manner by bringing together self-advocates, family members, and professionals who support them.
The aim of WITPP is for more transition age youth with IDD and their families from medically underserved communities of Wisconsin to receive relevant information for integrated transition planning by the age of 18. They make intentional efforts to focus on helping families who face barriers in accessing services such as bias, racism, ableism, language and culture, distance or cost, and other additional challenges.
The project began in 2020 with a full year of thoughtful planning. “We took the opportunity to gather a lot of our partners across the state on transition and have conversations, as well as with families and self-advocates about what was working well, and what wasn’t working while in transition,” says Lynn Hrabik, MPH, RD, director of WITPP. A common challenge they identified was how complex and overwhelming the process of transition is, and in particular how siloed the systems are. “So, that’s why we decided to really focus on integrated transition, after hearing from families and others about this lack of coordination or integration,” she adds.
Integrated transition planning includes multiple areas of the youth’s life such as education, work and healthcare when thinking about their goals as adults, and how to get there. In order to do this effectively, WITPP gathers professionals from all of these fields, and along with self-advocates and family members, they work together to develop accessible resources for integrated transition planning.
“I think that it is the only project that I’m aware of that brings together stakeholders from the multiple different areas of transition and tries to communicate among systems, break down silos, and figure out ways to get information to families in Wisconsin who are currently not accessing it,” says Nicole Brys, MPH, former project coordinator for WITPP.
The heart of WITPP is the Wisconsin Transition Planning Coalition. This group is made up of youth and adults with IDD, family members, self-advocacy organizations, state partners, education, healthcare and wellness organizations, non-profit community-based service agencies and employment resources. They intentionally engage people who are medically underserved and experience the most barriers in the process to learn from their perspectives how to serve them better.
They meet every other month through December 2024 to share updates, ideas and best practices, highlight programs or projects, and plan and provide input on the project’s transition improvement efforts.
They bring in and discuss topics about healthcare transition, employment, and education. “And it’s really trying to weave those pieces together and ensuring that professionals know about the other aspects of this system,” Hrabik explains.
Coalition meetings are interactive and informative. The goal isn’t for everyone to become experts in all areas of transition, but to get familiarized with different areas of the system for them to be able to provide more well-rounded support to youth in transition into adulthood.
The format of the meetings, a presentation followed by breakout sessions, also facilitates fruitful connections between people from multiple areas of expertise and different parts of the state of Wisconsin. “The assets and the challenges are very different between the communities that we’re working with,” Hrabik says. “So, I think it’s important to get the variety of perspectives.”
In between coalition meetings, the stakeholders leadership team meets monthly to guide project activities, which then the project staff carries out.
They have developed a handful of resources to guide families through transition informed by what they have learned in these meetings and collaborations. They have a list of key transition resources, key mental health resources, transition stories, a transition road map, and fact sheets that contain streamlined information to useful resources than can help prepare youth and families for the process.
Information and resources on transition are not lacking. There are many resources out there to aid the process. However, too many resources can make it overwhelming for self-advocates, families and professionals. “Through a really long process, they identified and then sifted and winnowed what are the top ones,” Hrabik says.
Members of the coalition with lived experiences – self-advocates and family members – review all the material to ensure that the information is easy to understand, and meets the needs of the families.
The involvement of individuals with lived experiences in WITPP’s work is key. WITPP’s community work implements a model called Community of Solutions. Developed by the Institute for Healthcare Improvement, this model supports communities on acquiring skills and applying them in practical ways to achieve meaningful community outcomes. “It’s a model that’s used to engage people who are affected by the issue the most in terms of lived experience in developing solutions that work,” says Shannon Webb, consultant on the team who provides support for community engagement. This model is used in many communities to address complex social and public health issues. “So rather than the professionals deciding what to do, it’s really a community building model involving people with lived experience,” Webb adds. Through WITPP, school and service professionals in La Crosse County, Southwest Wisconsin, Waukesha County, and Rock County partner with youth with disabilities and families to implement new ideas and solutions to improve integrated transition planning.
Kaia Hongerholt, Youth Services Manager at APTIV, joined WITPP as a representative of the La Crosse area. APTIV is a non-profit that provides services for people with disabilities in all facets of life, and was getting ready to launch their own transition program for individuals with disabilities when Hongerholt first heard of WITPP. “Hearing about [WITPP] just seemed like it aligned really well with what we were trying to get started,” Hongerholt says. So, they turned to the community to help ensure their new program would meet their needs.
Their goal through WITPP was to increase family voices in the transition process by hearing about their experiences directly from them. In collaboration with the Waisman Center, APTIV held an equity action lab, through which they brought in community leaders and professionals alongside families to come and share the struggles they faced through transition and how APTIV could improve their supports. “We didn’t know the gaps,” Hongerholt says. “We can make our best guess as professionals and from our point of view about what we think the gaps are. But we learned very quickly that what we thought the gaps were and what other professionals thought the gaps were and what families thought the gaps were, were all different things.” Identifying all of these gaps in the process helped them streamline their program so it could be more effective at meeting the specific needs of the population they serve.
Another project WITPP has developed is a middle school transition event, in which middle school students with IDD tour the UW-Whitewater campus and meet with college students who have IDD to have roundtable conversations about life in college. Students not only learned about all the opportunities available to them, but also were encouraged and motivated by older students with disabilities that served as role models of what they can achieve.
While WITPP does not provide a direct service to individuals, its goal is to change the system they interact with to increase accessibility to available resources. “[WITPP] is for the professionals to learn about each other to collaborate and to better integrate our information,” Hrabik says. “Ultimately, that trickles down to individuals in transition and their families having access to more integrated transition, information and supports.”
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