Family Support Program At Risk Of Losing Support

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Vickie Winstead, Family Support Coordinator with Pacesetters, Inc., sought ideas from those in attendance on how to save the program.
Thousands of Tennessee families may be without the assistance they need and depend on to help care for family members with disabilities unless the Tennessee State Legislature takes action before July of next year.

During a town hall meeting Monday held at the Cannon County Senior Citizens Center, supporters and beneficiaries of Tennessee Family Support spoke of the value of the program and stressed how important it is to keep it going.

The Family Support program has been serving people with disabilities since 1988. Individuals served must have a "severe or developmental disability" and they must live in an "unsupported" community residence, meaning they do not live in a state or federally funded setting.

"Everyone knows we are in an economic downtown and revenues are down and the state must have a balanced budget, but we do make a difference for a lot of people," Vickie Winstead, Family Support Coordinator with Pacesetters, Inc., said.

Pacesetters manages the Family Support Program in 12 Upper Cumberland counties, including Cannon.

Family Support funds are used by families who are caring for loved ones in their homes. The financial burden on these families is enormous. Families use the funds to pay for things that are not covered by insurance, such as incontinence supplies, lift and transfer devices, non-covered medications and therapies, respite and sitter services, specialized car seats, educational supports, and many other essentials that go far beyond the typical family budget.

The program is widely recognized as one of the most successful services that has ever been implemented in Tennessee. This is verified by annual consumer satisfaction surveys that are maintained by the state. Currently, the Family Support program services approximately 4,300 families. Over 6,000 persons with severe disabilities are on the statewide waiting list.

The average annual cost for each person served this year is $1,670. It is the least expensive of all programs which provide community-based services to people with disabilities.

The local program is managed by Pacesetters under the administration of the Division of Intellectual Disabilities Services. In Cannon County, approximately 20 families are currently being serviced. Throughout the Upper Cumberland, the number totals over 120.

However, if the state legislature fails to replace temporary economic federal stimulus funds in its 2010 budget, those families will endure additional hardships.

Because of this loss in federal funding, the Division of Intellectual Disabilities Services in November presented its proposed FY 10/11 budget to Governor Phil Bredesen with proposed funding of only $200,000 for Family Support funding statewide, this virtually eliminating the program by July.

Monday's town hall meeting was organized by Jeannette Dillard, Family Support Local/District Council member for Cannon County. It was at her request that State Rep. Stratton Bone attended to listen to the pleas of family members to keep the program alive and hear their stories of how it has helped them.

"It gives me faith with the system to see so many people here to offer their support," Dillard said. "I don't know how things will work out, but we are not going down without trying to do something. We are going to win by sticking together. All we have is each other and we have to fight this battle together."

Bone offered his support of the program, but added that there is no question 2010 will be one of the toughest years in a long time for the legislature in crafting a budget.

"We have to keep the program," Bone said. "I can't guarantee anything, but I will do what I can. I don't know what the answer is, but we will all have to work together to find one."


In 1992, at the urging of disability advocates and families, The Tennessee legislature established the Family Support Program. The program is funded by state dollars and designed to assist individuals with severe disabilities and their families to remain together in their homes and communities. Family Support is not a substitute for more comprehensive services provided under other programs, including the Medicaid HCBS Waiver, TennCare, Medicare, or private insurance.

The primary purpose of the program is to support

• Families who have school-aged or younger children with severe disabilities

• Adults with severe disabilities who choose to live with their families

• Adults with severe disabilities not supported by other residential programs funded by state or federal funds

Services can include but are not limited to: Respite care, day care services, home modifications, equipment, supplies, personal assistance, transportation, homemaker services, housing costs, health-related needs, nursing and counseling.

Services are flexible and responsive to families and their needs. An essential element of the Family Support Program is family and consumer involvement. Local and District Councils have been established and meet on a regular basis to oversee and provide advice on the distribution of local services.

To learn more about the effort to save the Family Support program, visit
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