Rate Riot

Families of disabled Texans fear an increase in home nursing rates could force them to cut services for their loved ones.

In October, state officials increased the fees for almost all “attendant care” services in the Home and Community-based Services (HCS) program, in some cases nearly doubling hourly rates.

But they hardly increased the money they allocate patients to fund these services. That means some disabled Texans could have to cut back on care in order to stay under their cost caps or ask for special exceptions to stay out of institutions.

“We’re going to have to compromise lots of hours and lots of services,” said Farhat Chishty, whose son Haseeb was almost beaten to death by a drug-addled employee at the Denton State School and now receives nearly around-the-clock care at home.  “Haseeb’s needs, our needs — the costs will go well beyond" the state cap that limits spending on in-home care.

Officials with the Department of Aging and Disability Services (DADS) say they made changes to the rates and the cost caps carefully, in order to keep Texas’ roughly 15,000 HCS patients fully covered. They said people who fear their hours will get slashed should call their case managers, who will work to find additional services.

“We have an obligation to support the health and safety of the consumers,” agency spokeswoman Cecilia Fedorov said. “We can’t just do something that’s going to force them to make do with fewer services or fewer hours.”

But Colleen Horton, public policy director for the University of Texas’ Center for Disability Studies, said the rate increase means something’s got to give. Either some disabled Texans will exceed their cost cap or the state will have to reduce the number of slots for the HCS program — or both.

“If you increase the rates you’re paying providers, and don’t reduce the amount of services, the cost per person naturally goes up,” she said. “There’s a finite amount of money available.” 

Under Medicaid waiver programs like HCS, disabled Texans can receive care in their own homes, group homes or foster care, as long as the cost of care is no more than double what it would be in a state institution.

In October, state officials sent out notices that rates for HCS care were increasing, but said the cost cap for care was rising too — from about $158,000 to $209,000 for most HCS participants.

This seemed like good news: Largely under-paid direct care workers would get a boost, and families would be able to maintain the same level of care.

But shortly after, state officials rescinded the letter and announced they’d made a mistake. The cost caps were only increasing by $10,000 for most HCS participants; for others they weren’t going up at all. 

“It was an incorrect letter,” Fedorov said, “and it was rescinded within 24 hours.”

The change won’t affect all families on HCS. Many don’t need around-the-clock care and aren’t close to meeting their existing cost caps.

But for the most medically fragile patients — whose families are already sacrificing care to keep them under the cost cap and out of institutions — the rate hike could be life-changing.

By state law, if the cost of in-home care exceeds the cap, patients must move into a nursing home or state-supported living center, cut costs at home, or seek a special exception to the cap. As of last year, just five of the 23 people that had requested these special exceptions had received them, and each sued the agency before getting the waiver. Most of the others stayed out of institutions because their relatives sacrificed services — and in many cases their own careers — to get under the cap.  

“The bottom line is, it’s going to be harder for families because the cost of a lot of services went up, but the cost cap remains the same,” said Elise Mitchell, a Dallas-based attorney with Advocacy Inc., the state’s federally funded abuse watchdog group.  

“It becomes that much more difficult for individuals to remain under their cost caps, particularly when they’re receiving a high level of services.”

Chishty and the attorneys working with her estimate the rate change could force her to cut Haseeb’s care down from 16 hours a day to 10 or 12 — and could almost halve the around-the-clock care he gets on the weekend. 

“Haseeb and people like him are in danger of ending up in institutions over this,” Chishty said.