Tennessee State Capitol (Photo: John Partipilo)
The federal government has approved a plan to use COVID relief funds to enroll up to 2,000 Tennesseans with disabilities — who are currently on a waiting list — into a state program that provides home and community-based services.
The expansion of the program — known as Employment and Community First CHOICES, or ECF-CHOICES — would be the first time in nearly a decade that significant numbers of individuals with intellectual or developmental disabilities could come off a lengthy waiting list and access services designed to help them live independently at home, provide transportation, and access job training or day programs.
There are currently about 2,500 individuals enrolled in the program, but an additional 5,000 who qualify for services are on the waiting list. Some have been waiting for years.
The approval by the Centers for Medicare and Medicaid Services came on September 22 but has not yet been formally announced by TennCare. Lauren Pearcy, director of public policy for the Tennessee Council on Developmental Disabilities, is among the advocates who have pressed to reduce the waiting list. On Wednesday she said the news was “thrilling.”
The expansion is, for now, temporary, said Connor Tapp, a spokesman for TennCare, which administers ECF-CHOICES. Tapp did not provide a time limit for the expansion. The temporary expansion will also require state approval, he said. The approval process is a standard “off cycle” budgeting process used for items such as grants that do not require additional state funding, he said.
At full enrollment — with 2,000 people coming off the waiting list — the expansion comes with a price tag of $91 million, Tapp said. Most of those funds are paid for by the federal government.
“We are currently in the process of receiving state approval for a budget expansion, and, once finalized, implementation can begin,” Tapp said.
The ECF-CHOICES program was launched in Tennessee in 2016 with about 2,400 people. It has never been able to enroll that many again, and currently accepts only those individuals who are in crisis. Crises involve adult children with disabilities who have been cared for by parents their whole lives until a parent dies or becomes infirm, or an individual with disabilities who is living in a home where he or she is being abused, neglected or exploited.
Most other families face a long wait for limited slots.
Lesley Guilaran’s son, Angel, has been on the ECF-CHOICES waiting list for four years. Now 20, Angel is deaf, legally blind and on the autism spectrum, she said.
Guilaran said her family is lucky that their public school district in Madison County offers a “transition academy” that has allowed Angel to remain in his high school building after graduation to learn home and work skills.
The academy provides him a full-time ASL interpreter and communication device. But after Angel ages out of the program at age 22, he will lose his interpreter, his communication technology and the day-to-day instruction he receives during school hours while his parents work.
“Angel is a gifted artists with a scientific mind but when he gets out of the shower he doesn’t know what clothes to pick,” Lesley Guilaran said. “He wants to live in a tiny house, but we can’t put a kitchen in there because we fear he would (accidentally) burn it down. As my husband says, we’re basically driving towards a cliff. Once he reaches 22, what are we going to do?”
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