Supporting Families of Individuals with Disabilities
A Community of Practice
In 2013, Tennessee was selected to join a group of six states charged with identifying ways to better support and strengthen families that have members with intellectual and developmental disabilities. This “Supporting Families of Individuals with Disabilities” initiative, which is funded by the federal Administration on Community Living, is led in Tennessee by the Council and the Department of Intellectual and Developmental Disabilities.
These states are working to share best policies and strategies to support families in addressing the physical, social, emotional and material well-being of their entire family, including the member with a disability. Participating states include Connecticut, Washington, District of Columbia, Oklahoma, Tennessee and Missouri, which serves as the “mentor state”. In 2016, 11 more participating states joined this national movement.
The Supporting Families initiative estimates that nationally only about 25% of individuals with disabilities receive disability services, and that families are providing the vast majority of care for individuals who have intellectual or developmental disabilities. With this national initiative, states are exploring ways to expand support across the lifespan, especially to families who are not receiving support services from government programs.
- "The Life Course Framework" is a foundational concept of this initiative - it simply represents a mindset of considering a person's needs and a family's needs across the lifespan and various parts of their life, thinking about what truly represents a "good" quality life (outside of just access to disability services), and highlighting the value of having individuals and families have a "voice" when states are developing programs and policies that will affect those individuals and families' lives.
Outcomes of the Tennessee Supporting Families team's work include :
- Creating and distributing resource folders meant to assist families in navigating the complexities of the service system
- Developing a new partnership with the University of Tennessee Extension office, which has agents in every county who work to connect all families, including those with members with disabilities, to resources and supports that they need; partnering to educate UT Ext. agents on the needs of families affected by disabilities
- Partnering with KidCentral TN to link all Tennessee families who have a member with a disability to resources and information
- Hosting 5 "Lunch and Learn" events for state agencies to learn about this initiative; discuss expanding peer-to-peer support opportunities for parents, siblings and self-advocates; learn about TN Disability Pathfinder, a statewide disability information and referral office; brainstorm about how to involve families in policy, planning and evaluation of programs and services; and explore how technology can support individuals with disabilities and their families.
- Sharing information at the TN Disability MegaConferences
- Partnering with Vanderbilt Kennedy Center to facilitate focus groups with individuals with disabilities and families to share input about the implementation of the new Employment and Community First CHOICES program with TennCare and the managed care organizations administering the program
- TN Kindred Stories of Disability - Supporting Families Edition - The Council partnered with the Vanderbilt Kennedy Center for Excellence in Developmental Disabilities and Tennessee Disability Pathfinder to create this special edition of the Tennessee Kindred Stories project. The stories in this booklet were collected by students enrolled in a Vanderbilt University course that provides an introduction to the field of family studies, with special attention paid to families that include children and adults with disabilities. Students interviewed 15 different families in Tennessee who have members with disabilities to get their perspectives, and then summarized those experiences in their own narratives and voices. The booklet focuses on sharing stories of how some Tennessee families are building good lives for their family member with a disability using both formal services and informal supports in their communities. Common themes surfaced during the family interviews and we have outlined some of those themes throughout this booklet, grouped by the “challenges” and “successes” mentioned by families. Read "Kindred Stories: Special Supporting Families Edition - Connections to Communities".
The website for this national Supporting Families initiative, including updates from all six participating states, is www.supportstofamilies.org/.
The national initiative continues to develop tools to help families navigate the "Life Course" throughout the lifespan of the family member with a disability. These tools help families think about the variety of services and supports that their family needs or might need in the future, plan for the next stage of life and consider how to best achieve a meaningful, quality life in the community for their loved one with a disability.
- You can view and download (they are free, but some may require your email address) these tools in the "Life Course toolkit" at http://lifecoursetools.org/
For more information about TN's activities around the Supporting Families of Individuals with Disabilities initiative or to schedule a presentation about the Supporting Families initiative or training on the LifeCourse toolkit, contact Emma Shouse, Director of Communications for the Council, at firstname.lastname@example.org or 615-253-5368.