Community of Practice: Supporting Individuals and Families Over the Life Course
It’s no surprise that the majority of individuals with Intellectual/Developmental Disabilities (I/DD) live with and receive daily care and support from their families; and yet, despite the vital role that families play in supporting their sons and daughters with I/DD, states have fallen short in building systems or assisting families in developing community connections that recognize and support their commitment.
Our state’s No Paid Services Caseload is filled with thousands of such families who are trying to avert crisis and keep the family intact. Many have made community connections that meet their needs but others are holding on in the hope that one day funding for services will reach them.
Addressing the lack of community connections and funding is essential, and our state has been working hard on that front; but to reach a long-term solution, we need a comprehensive system that reflects the values and realities of today’s families.
In an effort to focus on the needs of families, the Developmental Disabilities Council and the Washington State Developmental Disabilities Administration applied for and received a five-year Community of Practice grant to explore different ways of supporting families across the lifespan of the individual.
- Create a framework for supporting families that addresses the needs of a family member with I/DD across the lifespan and focuses on the individual living a life that is meaningful to him/her. The Community of Practice will support states to develop and sustain exemplary family support practices.
- Develop and facilitate a multi-level Community of Practice designed to build capacity within states and the nation to create policies, practices, and systems to better assist and support families that include a member with I/DD across the lifespan.
- Capture and share lessons learned and products to develop, implement and sustain exemplary practices to support families and systems.
Community of Practice Priorities
- Adult Siblings who have and will assume support and care giving roles
- Senior Caregivers with sons and daughters over 40 living a home
- Supporting Individuals with I/DD who are parents
- Improving the “Front Door” experience of the DD System
- Supporting Adults with I/DD living at home exercising decision-making, self-determination and autonomy.
Planning Tool for Identifying Supports: The Star Form
A big part of creating a good life is looking at the individual’s whole life, beyond paid services. The Star Form helps kick start this process. Use it to identify helpful people, community resources, technology and paid services to help meet any goal or task.
Example: Ben is 25 years-old and lives at home with his parents. He had very little experience being by himself. Through the use of his iPad (apps to occupy him and FaceTime to communicate with people he trusts), he is able to stay alone for up to an hour. The use of technology increased his personal assets & strengths. Family helped him set up a Facebook page so he can talk to his friends (which increased his relationships).
Using a Star Form to identify support can go a long way toward reaching goals of any type. Download a Star Form and get started today.
Life Course Introduction to Planning & Services. Our four-page pamphlet includes a star form, organizational tips, and information about I/DD services in Washington State. Available to download or order in print.
Community of Practice Resource Folders. Order printed copies for yourself or organization (or view resources in list form).
Dylan’s Dream: Pursuing Higher Education
Brian’s Story: Living an Independent Life with Help from Family and Community
If you are interested in learning more about the national project, visit the Communities of Practice national website.