On Monday afternoon, Emily Wolinsky and about 15 other disability-rights advocates, most in wheelchairs, sat around a long table at an Italian restaurant across the street from the Texas Health and Human Services Commission (HHSC) building. Over plates of pasta and vegetables, they celebrated. “They fucked with the wrong cripples,” Wolinsky said, laughing.
For much of the day, they had been camped out in the lobby of the HHSC building in Austin to demand that state officials do something about the imminent loss of services for dozens of working Texans with disabilities in the Austin area. Last week, about 40 people received two weeks notice — via an unsigned, undated letter from HHSC — that the company providing home careworkers to help with basic motor tasks would end services on September 30. Without the assistance, Wolinsky, who has spinal muscular atrophy, says she wouldn’t be able to get herself out of bed in the morning to go to work.
Advocates claimed a small victory on Monday when — after surprising two HHSC officials in the lobby — they were abruptly told the state had renewed its contract with the provider, Outreach Health Services, for another year, with a possible four-year extension. But details on the negotiations are scant.
Asked to confirm that the contract with Outreach would continue, HHSC spokesperson Carrie Williams wrote in an email Tuesday that “an agreement is in the works now and we hope to have it finalized before the end of this month so there would not be a break in service.” HHSC had been trying to negotiate a new contract with Outreach since July, Wolinsky was told in an email from Senator Kirk Watson’s office Monday. But an agreement was not reached until Monday morning, after officials resumed negotiations, said Watson’s legislative director, Sandy Hentges Guzman.
The reassurance, though not definitive, is a big change from the letter last week, which said that if the state couldn’t find a replacement, services would be cut off with no right to appeal. Advocates were skeptical that the last-minute change would have happened if they hadn’t shown upand surrounded the state officials with their wheelchairs. And they worry that if individuals in other parts of the state face similar cuts, they won’t have the same recourse.
The uncertainty isn’t new for Texans with disabilities, who say they are constantly fighting budget cuts, underfunded programs and loss of services. A state program that offered grants to people with disabilities to buy services that help them continue to live at home ended last month because the Legislature declined to fund it. Meanwhile, cuts to therapy services for kids with disabilities have led providers to end services, leaving families with few options and forcing the state to scramble to find replacements.
The program at issue this week, Consumer Managed Personal Attendant Services (CMPAS), provides assistance to 340 Texans with physical disabilities who work, and are therefore ineligible for Medicaid. Supporters say it saves the state money by enabling recipients to work and live at home. But the program is funded by a federal block grant and by state dollars, both of which are limited, and not keeping up with demand. Texas is second to last in the nation in wages for personal care aides, with a base wage of about $8 an hour, often without benefits, according to a study by the Coalition of Texans with Disabilities. Meanwhile, the demand for attendant services is increasing. Without incentives from the state, the lack of competition gives HHSC little leverage in selecting contractors.
“We can’t make home care agencies take a bid, because they hold the power,” said Cathy Cranston, a community organizer with the Personal Attendant Coalition of Texas (PACT) and ADAPT of Texas.
In the case of CMPAS in the Austin area, the state was unable to find an alternative provider. (Wolinsky said an HHSC employee tasked with finding a new contractor reassured her on Friday that they were searching, then asked if she knew any that might be interested.)
Wolinsky has never walked independently. She needs help getting dressed, going to the bathroom and sitting up in bed. She can’t lift her hands above her head — putting on deodorant and washing her hair require assistance. She can’t lift more than 1 pound.
The CMPAS program makes it possible for Wolinsky to work at Austin Community College, where she said she makes $48,000 a year advising students with disabilities. She also founded NMD United, a nonprofit for adults living with neuromuscular disabilities. Wolinsky’s full-time attendant services cost about $25,000 per year —an amount that she said would be impossible for her to pay out of pocket.
Recipients of CMPAS hire and manage their own attendants, and are responsible for co-pays depending on income. “We’re not only taxpaying citizens that work and make an income, but we’re also paying into our care,” Wolinsky said. “It’s unbelievable that they chose us.”
Some CMPAS beneficiaries blame both the state and Outreach for what happened, and don’t trust that their care is secure, even for the next year. “Even if this is solved we’re still very, very upset about how we’ve been treated and how things went down,” said Wolinsky, who said she’s heard from friends in similar situations who have lost services. She worries about having to figure this out again a few years, and that the experience may be a harbinger for other Texans.
“They messed with the wrong group,” said Wolinsky. “We’re all working. If we have the cognitive ability to work, we have the ability to fight.”