The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities
Last month, Texas argued before the U.S. Supreme Court that when Congress in 2017 eliminated the individual mandate, the rest of the Affordable Care Act became unconstitutional. People with disabilities worry that Texas will prevail. Trinady Joslin at The Texas Tribune:
Without the Affordable Care Act, disabled Texans stand to lose programs that have allowed more people to stay in their homes, rather than state-run institutions. And like many Americans, they fear they could again face insurance companies that would deny them coverage because they have preexisting conditions.
Texas is one of eight states that opted into the Community First Choice Option program, made possible by the ACA. The Medicaid program gives states funding to help keep disabled people in their homes who might otherwise end up in nursing facilities or other institutionalized care.
“It can provide personal assistance services to [have] someone in your home to help you with cooking and cleaning, to help you with personal tasks like toileting or grooming,” said Silvia Yee, senior attorney at Disability Rights Education. “It can help with support systems that a person with a disability might need to stay in the community.”
Sheena Walter, 35, lives in Austin and has used the Community First Choice program for four years. Walter is autistic and needs personal care attendants that help with tasks like cooking and laundry five days a week.
For years, she’s had personal care attendants paid for by Medicaid, but they didn’t always show up. Sometimes, Walter waited over a week for someone to arrive and sustained herself on cold sandwiches.
“It would be continual frustration, pretty much, because you would call the agency and they would say there’s no one to send,” Walter said.
Now her CFC service coordinator helps her advocate for the care she needs and acts as a mediator when attendants aren’t doing their jobs.
“What I found is sometimes agencies don’t listen directly to a disabled individual,” Walter said. “That’s been my experience. But the service coordinator, they would most of the time listen to them. So it does help to have an extra person to be an advocate, especially if it’s a stressful situation.”