For the 7,100 to get off the waiting list and get care, they must be in 'crisis'
At 19 years old, suffering from autism, severe speech and language disorders and other intellectual disabilities, Grace Walker Goad has been on a waiting list for services from the state Department of Intellectual and Developmental Disabilities for more than half her life.
She cannot cook, drive, take public transportation or communicate. In the past, she has tried to injure herself. Federal rules allow her to attend public school until she is 21. Without help from the state agency, her mother, Leisa Hammett, is worried about what comes next.
Goad's 10-year wait for services is not unusual, advocates say. She is one of more than 7,100 state residents with intellectual disabilities who cannot take care of themselves and are waiting for a long-term-care program run by DIDD through special funding from the federal Medicaid program.
Some have been on the list since 1994, waiting for one of 8,447 slots.
The waiting list is one of nine "serious problems" identified in a newly released audit of the agency by the state comptroller's office. Currently, only those in "crisis" situations are allowed off the list. The agency defines "crisis" as someone who is homeless, whose caregiver has died or who is a danger to himself or others.
Goad does not meet those criteria, but she still needs professional care that her mother, a self-employed writer, said she alone cannot provide.
"What happens to a lot of these young adults after they leave school is they just sit on the sofa," said Hammett, 53, who cares for her daughter around the clock when Goad is not in school. "What comes with a lack of services is a regression of all those skills that federal government requires schools to provide.
"We unfortunately live in a state that has no plan. Tennessee has no safety net."
More budget cuts
In a report highly critical of the agency that was released earlier this week, auditors noted that the problem affects many families.
"Until such time as top state officials can find a sufficient funding solution which allows the Department of Intellectual and Developmental Disabilities to provide much-needed services to individuals with intellectual disabilities, the high number of individuals on the waiting list for Medicaid services will continue to plague the department, taking a heavy financial and emotional toll on the individuals needing services and their caregivers," the audit noted.
The auditors' recommendations, however, come within weeks of Gov. Bill Haslam's informing the agency that it must come up with a provisional plan to cut its budget by 5 percent — the same amount the agency's budget was cut last year.
The agency's budget has been cut in each of the past six years, according to figures provided by spokeswoman Cara Kumari.
Six years ago the state spent $865 million on services for people with intellectual disabilities, which the state defines as an IQ of 70 or less. By last year, the agency's budget had been cut by $37 million to $828 million.
And a hearing at the legislature on Wednesday to examine the department made clear that lawmakers, who must approve any budget changes, may not agree on how to address the problem.
"The bottom line is that we all share guilt and responsibility for having failed to protect these citizens — the least of these — with adequate funding," said Memphis Rep. G.A. Hardaway, a Democrat.
"They've been cut year after year. They can't solve the problem unless we give them adequate funding."
Rep. Joe Carr, a Republican representing parts of Rutherford County, responded: "We do need to take care of the least among us. It's how we do that in a responsible manner."
The agency's budget challenges go beyond finding funds to help individuals such as Goad, according to the newly released audit.
The department was created to serve two distinct populations — people with low IQs that define an intellectual disability, as well as individuals who have developmental disabilities such as cerebral palsy or spina bifida.
The audit found the agency has developed no long-term-care programs to aid people with developmental disabilities. It also has made no effort to learn how many live in the state and need care — despite the availability of federal funds to do so.
On Wednesday after the release of the audit, DIDD chief Debra Payne told lawmakers the agency would begin taking steps to apply for those funds.
"People with developmental disabilities don't even have a list to wait on," said Carrie Hobbs Guiden, executive director of the Arc of Tennessee, who along with other advocates tried and failed last year to get lawmakers to approve a $5 million budget increase to aid those individuals.
This year, Guiden said advocates are working to find a significant source of funding to aid elderly parents, 75 and older, who have spent a lifetime caring for now-adult children with developmental or intellectual disabilities.
Those adult children with intellectual disabilities are often moved to the top of DIDD's waiting list as soon as their parents die, but Guiden hopes to get those families help sooner.
"Oftentimes they lose their parents, get moved out of their home and get taken care of by people they've never seen their whole lives, and their parents die never having had any sort of comfort in knowing what would happen to them," she said.