2019 TASH Conference

Compared to youth without disabilities, integrated employment is lower for youth and young adults with intellectual and developmental disabilities. In DC and Missouri, too many young people with disabilities still graduate from high school into a Day Program rather than college or a job and leave school with guardians, limiting their ability to make decisions about their lives just as they are entering adulthood. Missouri and DC are uniquely situated, in that each state has received two multi-year grants from the Administration on Community living and braided our strategies for success: Partnership in Employment Systems Change Project of National Significance grant and the National Supporting Families of People with Developmental Disabilities across the Lifespan Community of Practice (CoP). Through these grants, the states have established cross-agency relationships, and are implementing policy and program improvements, and transforming systems to support self-determination and increase integrated employment. This has required deep partnership with self-advocates, families, the UCEDD, the state developmental disabilities and vocational rehabilitation systems, the DD Council, and other community and government partners to raise expectations and transform our service systems. DC and Missouri are two of the initial 6 states to participate in the Supporting Families CoP, which involves collaborations at all levels to develop systems of support for families throughout the lifespan of their family member with intellectual and developmental disabilities (I/DD). The overall goal of supporting families, with all of their complexity strengths and unique abilities is so they can best support, nurture, love and facilitate opportunities for the achievement of self-determination, interdependence, productivity, integration, and inclusion in all facets of community life for their family members. This movement now involves seventeen states, with varying levels of involvements of UCEDDs. Both DC and MO have involved their UCEDDs from the inception of this initiative, with the UMKC UCEDD leading this national effort. Missouri and DC have leverage grant funding to support systems change, using the learning from the National Supporting Families of People with Developmental Disabilities Across the Lifespan CoP and the National Supported-Decision Making CoP, along with strong cross-agency and community-based partnerships to promote systems change that supports self-determination and competitive integrated employment. Key to this work is raising up the voices of self-advocates and their families, of all cultures, so that as we reform our systems we are guided by their experiences, challenges, and vision for a good life for themselves and their families. Families can be our greatest cheerleaders for person-centered and employment first systems change and our strongest advocates, or they can be barriers to systems change. In both DC and Missouri, as we undertook reforms to our developmental disabilities systems, we worked closely with the people we support and their families, using the LifeCourse framework and person-centered thinking to reframe vision of what success looks like at the individual and systems level and build a shared responsibility for systems change. One of the areas identified by self-advocates and family members in both states was the need to limit guardianship and return decision-making to the hands of people with disabilities, supported by their families. At the same time, self-advocates were demanding that the states do better at supporting them to achieve competitive integrated employment. Working closely with self-advocates and parents and with supports from national subject matter experts through the National Resource Center on Supported Decision-Making and the National Supporting Families CoP at UMKC, DC and Missouri have partnered with and supported self-advocates and families in successful systems change initiatives. In this session you will hear the national perspective on what s happening around the country to launch and grow supported decision-making and promote self-determination, inclusion, and competitive integrated employment; a discussion of how this is working in Missouri and DC; and a deep dive with a self-advocate and family members about how supported decision-making works in practice and some of the lessons learned. We will share promising practices at the individual and systems level and describe how various partners can help support self-advocates and family members to lead change. Panelists will share successes in engaging self-advocates and families to not only help them envision and plan a good life for themselves and their children, but also to better inform state systems changes through deep engagement with families and to successfully advocate for those changes. This session will conclude with an interactive question and answer panel discussing how to apply lessons learned in their own state.