For low-income people with disabilities, a straightforward mission like finding the right wheelchair can be a long-fought battle. More complex needs, such as acquiring home health care services, can take years — and lots of luck.
At the Memphis Center for Independent Living, staff and volunteers work to give disabled clients the resources they need to sustain independent living. It’s the only center of its kind in Memphis and Shelby County.
Now Sandi Klink, the center’s executive director, fears the recently unveiled Senate healthcare bill will make the center’s already difficult goal of keeping disabled individuals in their homes nearly impossible.
For weeks, Republican senators met behind closed doors in Washington, tweaking the proposed replacement to the Affordable Care Act they unveiled Thursday. The bill includes deep cuts to federal Medicaid funds, which Klink and the center’s staff rely on to maintain business as usual.
Millions of able-bodied Americans worry about the future of their health care as legislators hash out details of an ACA replacement plan. For low-income disabled citizens, options for living in their own homes are tied directly to the outcome.
Minimal Resources, Maximum Threat
The decision to use a wheelchair can be a tough psychological hurdle for some to clear.
But when Klink finally sat down in her motorized wheelchair, everyday capabilities immediately multiplied.
“I was set free,” she recalls. “My chair didn’t confine me, it gave me freedom.”
At 61, Klink has been living with the effects of juvenile rheumatoid arthritis since she was 4. Many children grow out of the autoimmune disease, but Klink did not — save for periods of remission during both of her pregnancies.
After 50 years of walking through searing pain on a daily basis, she finally allowed herself the liberty of sitting down in her own mobile chair. She considers herself one of the lucky ones.
“I’m fortunate enough that I have enough of an income that I can afford the right chair for me,” Klink said. She ticks off her other advantages, such as a van equipped for her chair, a significant other with whom she lives and a home of her own.
For the disabled adults without a support network or the ability to work, nursing homes are increasingly the only option. Data from the U.S. Centers on Medicare and Medicaid show adults between 31 and 64 years old now make up 15 percent of the nursing home population — up from 10 percent in 2000.
Federal laws, for now, will stipulate that nursing homes must receive federal and state funding. But, no such laws are in place to protect services that keep disabled adults out of nursing homes.
Since federal and state laws are not in place to protect home healthcare services that help keep disabled adults out of nursing homes, disability advocates like Klink must orchestrate grassroots efforts to push for funding for those services.
With a projected $800 billion in cuts to Medicaid over a 10-year span, President Trump’s budget could slowly starve home health care resources as well as living assistance.
Tennessee’s Medicaid program, TennCare, is the insurance provider to more than 261,500 low-income and disabled adults and children in Shelby County. More than 25 percent of the county residents rely on the program for health care.
“The current president and his cabinet have no idea what it’s like to live on $600 a month,” said Klink. “They want to cut the very few benefits that we have, and that’s a threat to our very existence.”
Klink’s 16 years at the center have conditioned her to battling for disability rights and resources. The state of Tennessee, she says, has come a long way in terms of home health care resources and American Disability Act enforcement.
“We just now got the state to a point where there is a decent program in place to move people out of nursing homes and back into their communities,” she says.
The center has helped move 30 individuals out of nursing homes and into their own spaces in the last three years. As its name implies, independence is the ultimate goal.
And, those individuals are doing great,” said Klink. “They have a life, they can pick up the phone and schedule a ride with MATA Plus. They can go out to church and go out to dinner. They can choose what to eat and what to drink. They can choose what company they keep or don’t keep, all the things that you and I take for granted.”
For now, the staff at the center can only hope for intervention at the federal level before the proposed budget, with what they consider devastating cuts, is approved.
The bill intended to replace the Affordable Care Act is unilaterally opposed by Democratic Senators, and may face opposition from moderate and conservative Republican Senators.
Only two Republican Senators need to vote against the bill to ensure it doesn’t pass.
Klink and the staff are used to strife and opposition — they’ll tell you it often goes hand in hand with disability advocacy.
“But, not knowing what’s going to happen with this budget is really scary,” Klink says.
The center is funded by private donors and support from larger philanthropic foundations. Klink wonders what will happen when those foundations must step up their efforts to support larger health-care-related institutions that also rely on federal funding.
“What happens when these big donors need to give more money to help ease the funding cuts for clinics and hospitals?” Klink wonders. It’s another potential problem that the center may or may not have to face.
For all of the unknowns, Klink knows that in order to serve adults with disabilities, the fight to keep them out of nursing homes has to stay centered.
“I’d honestly rather go to jail then go to a nursing home,” said Klink. “You don’t go to those to live, you go to just exist.”
This report is brought to you by MLK50: Justice Through Journalism, a nonprofit reporting project on economic justice in Memphis. Support independent journalism by making a tax-deductible donation today.