- Your News
By ANDREA AGARDY
Thousands of Tennessee adults with intellectual and developmental disabilities have been languishing on a waiting list for services they desperately need. One nonprofit organization has decided the time has come to step up its efforts to force the state to pay attention.
The Tennessee Department of Intellectual and Developmental Disabilities (DIDD) offers home and community-based services to individuals with intellectual disabilities. According to statistics provided by The Arc of Tennessee, as of June, there are 7,179 people in the state — and 40 in Coffee County — on the waiting list to receive those services, some of who have been waiting for years.
The services the DIDD provides participant families varies from one individual to the next, The Arc executive director Carrie Hobbs Guiden explained, depending upon the severity of the individual’s disability and the family’s specific needs.
In some cases, the services can consist of personal assistance, such as transportation to and from doctor’s appointments and shopping trips, while other individuals receive occupational and physical therapy.
The services are provided at no cost, as an alternative to services provided in an institutional setting. The state and federal governments fund the efforts jointly, through a Medicaid waiver program, with the federal government contributing $2 for every dollar the state allocates for the program. The problem, Hobbs Guiden said, is the state has not increased its funding amount for years; so neither has the federal government.
She said legislators hearing directly from parents struggling with the issue has a much stronger impact than The Arc could have pushing for change on its own. She said the organization had conducted a waiting list campaign several years ago, and while there were some improvements at the time, those changes proved to be short-lived.
“We’re trying to re-ignite the flame,” she said.
And now may just be the perfect time to do it. Hobbs Guiden said the overall economy is on the upswing and tax revenues are exceeding expectations. She also pointed to state officials who are particularly sympathetic to the cause, including DIDD Commissioner James M. Henry, a former legislator whose late son had a developmental disability, and Gov. Bill Haslam, who she said, “really seems to listen to this issue.”
Hobbs Guiden offered her theory as to why the waiting list has grown to more than 7,000 people, based on what she has seen while working in other states. She said years ago, states were solely responsible for funding services to the intellectually disabled and, “when the Medicaid Waiver option came out they saw it as a windfall and didn’t look to the future.”
Families who were eligible for the services after Medicaid got involved, requested all the services they could, she continued, even if they weren’t immediately necessary.
“Once you give something to an individual or family, taking it away is nearly impossible,” she said, adding that many families took services they didn’t need at the time they was offered to, in essence, save their place in case they needed the assistance in the future.
“People with developmental disabilities will need services their whole life and they will only need more help as they get older,” Hobbs Guiden said. “They (the states) didn’t look far enough into the future to see this would be a problem.”
In an effort to rally affected families, The Arc of Tennessee is holding a series of public meetings throughout the state, titled “It’s Not Too Late … End the Wait.” A pair of meetings will be held in Tullahoma on Thursday, Aug. 23 at Skills Development Services, 704 South Washington St. The presentation – which will be offered twice, once at 1 p.m. and again at 6 p.m. to accommodate the schedules of as many people as possible — is intended to provide family members and caregivers with the information, resources and tools they will need to lobby officials to increase the funding for the services, which are available to adults age 22 and older.
“People with an IQ less than 70, they graduate from school, but they will always need some kind of support,” Hobbs Guiden said, adding that for many families, providing that support their own can put the entire family behind the financial 8 ball.
“If an individual needs 24/7 support, someone has to quit working and that can lead the family into poverty,” she said.
Another complication is the number of aging parents who are the sole caregivers for the intellectually disabled children. Hobbs Guiden said that although there is no official data tracking how long people spend on the waiting list, she has spoken to some families have been waiting 10 to 15 years for their turn. She said she recently spoke to one woman in her 70s who is caring for three adult children with intellectual disabilities. Currently the only way people are bumped up the list is if they experience a crisis, such as homelessness, death of a primary caregiver or if they pose a danger to themselves or others.
Every family on the DIDD waiting list has been notified of the upcoming meetings in their area, and Hobbs Guiden encouraged them to attend. She said recent meetings in Hendersonville and Davidson County drew a total of roughly 75 attendees, a turnout she hopes will improve here in Coffee County.
“With 7,200 people on the list you’d expect more (attendees) but the same reason they need these services is the reason why they can’t go,” she said, adding parents and caregivers are welcome to bring their children along to the meeting if need be.
The whole point is nothing is changing,” said Hobbs Guiden, “and unless parents bring attention to the situation they’re in, nothing will… There’s a huge population of individuals not getting the support that’s needed… It’s been in a holding pattern and the list is growing.”
More information on The Arc of Tennessee and the It’s Not Too Late… End the Wait meetings is available online at www.thearctn.org.
Andrea Agardy can be reached by e-mail at firstname.lastname@example.org.