The Administration on Disabilities (AOD) within the Administration for Community Living (ACL) will award a single grant in fiscal year (FY) 2021 to develop a Community of Practice (CoP) designed to build capacity across and within States’ aging and disability networks to support futures planning

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for individuals with intellectual and developmental disabilities (ID/DD).

Specifically, the purpose of the grant is to build capacity across the networks to support individuals with ID/DD and their families better plan for their future across the lifespan, including addressing key social determinants of health in order to more effectively address the individual’s needs, goals, and preferences.

The grantee will:
Develop and define the scope of the issue; Gather information including the identification of emerging and promising practices across states; Establish and maintain mechanisms to share and disseminate data, information, and promising practices; Develop ideas to address challenges and opportunities to improve strategies, policies, practices, and systems supporting families of people with ID/DD that are culturally competent and facilitate self-determination; Provide technical assistance; and Promote interagency collaboration and partnership between the aging and disability networks Nearly one million families in the U. S. include adults with ID/DD living with aging caregivers and that number is expected to grow in the coming years.

While the majority of individuals with ID/DD live with their family, about two-thirds of these families do not have advanced care plans in place and most are not receiving formal services through their state’s ID/DD agency.

More than half (54%) of family caregivers indicate that they did not plan for the future, and as a result, are often concerned with what will happen to their loved ones with ID/DD when they are no longer able to care for them.

Planning for the future is central to the well-being of individuals with ID/DD and their families across the lifespan.

Developing successful futures planning strategies can also play a role in addressing social determinants of health (e.g., economic stability, housing, education, and access to care).

The funds for this award are authorized under Subtitle E of the Developmental Disabilities Assistance and Bill of Rights Act of 2000, Projects of National Significance (PNS).