The need for expanded services for adults with intellectual disabilities was the focal point of a presentation by The Arc Tennessee at Journeys in Community Living this past Thursday.
Carrie Hobbs Guiden and Peggy Cooper with the grassroots advocacy organization The Arc Tennessee held a more than a 1.5-hour-long discussion about topics including the Aging Caregivers bill, the Medicaid Waiver and the state’s Waiting List for disability services.
The presentation comes at a time when more than 7,000 Tennesseans, including 165 here in Rutherford County, are stuck on the state’s Waiting List for community-based services, and as a bill makes its way through the state’s legislature that could cut down on the number of people waiting for services.
The Aging Caregivers Bill—which The Arc has been a strong proponent of—would automatically qualify individuals with intellectual disabilities stuck on the waiting list for services once their caregivers reach the age of 75.
Rutherford County legislators, including State Senators Bill Ketron & Jim Tracy, and State Reps. Joe Carr, Mike Sparks, and Rick Womick, recently expressed support for the bill to the local disability services community.
Guiden explained to a small crowd that in its current shape, Tennessee’s extensive Waiting List is creating situations where young people with intellectual disabilities are languishing at home, losing all the skills they've developed during their school years.
It’s also causing their parents, siblings or other relatives to quit work to take care of their family members, creating further poverty in the state.
“The result is thousands of Tennessee families suffering from extraordinary stress,” she said.
Currently, those on the state’s Waiting List are classified into four different levels of needs. Only those in the most severe situations are able to receive services.
“We’re talking about situations where a person is homeless, has no living caregiver, or is an imminent danger to himself or others,” Guiden said.
About 67 percent of people on the Waiting List are adults living at home with no services at all, according to The Arc. Thirty-two percent are children whose families need support when their child is not in school and the remaining one percent is children in DCS custody and people in nursing homes or mental health institutions.
In addition to the Aging Caregiver’s Bill, Guiden explained to the crowd that everyone in the disability field is attempting to figure out ways to cut down on the Waiting List.
The state recently held three forums — one each in West, Middle and East Tennessee — in an attempt to get suggestions from the families of people with disabilities on how to provide better and more efficient services in the hopes of opening up DIDD services to more people who need them.
“Right now, there simply isn’t enough money in the state of Tennessee to fund services for everyone on the Waiting List,” Guiden said, adding the average person enrolled in the statewide waiver program receives about $89,000 in services per year.
Even though that’s much cheaper than the $500,000 price tag per person at a state institution like Clover Bottom in Nashville, “it’s still pretty expensive,” she added.
Journeys Executive Director Betty McNeely later told those in attendance that she and the people who work for her agency are also available at any time to answer questions about the Waiting List.
“We will do everything we can to work with you and the state to get services,” McNeely said.
Those in attendance also raised questions about conservatorships and other issues that families address when loved ones have intellectual disabilities.
Cooper explained the process of establishing a local chapter of The Arc in Rutherford County, and later said The Arc has plans to return to Journeys in the future to put on other presentations and workshops for families.
The Arc Tennessee is a statewide organization that works to improve the lives of people with intellectual or developmental disabilities by supporting or providing services and programs.
Journeys in Community Living is a nonprofit disability services provider focused on helping adults with intellectual disabilities choose and realize their visions of where they live, work and socialize.