A Hole in the Safety Net

Barbara Cullison waited eight years and eight months to get community-based care for her profoundly autistic daughter Audrey through a popular Medicaid waiver program designed to keep people with disabilities out of institutions. Now, Audrey and thousands of other Texans with disabilities fear losing their services because of budget cuts demanded of state agencies.

Advocates say the Department of Aging and Disability Services’ baseline budget request eliminates financing for more than 13,000 people — the majority of them waiting to receive so-called Medicaid waiver services in private homes, group homes or other community settings. Agency officials say an “unknown number” of people already receiving the services could lose them.

Lawmakers would have to approve another $317 million off of the agency's budget wish list — called "exceptional items" — to keep the services intact, a pipe dream when the state is facing an estimated $21 billion shortfall and has asked agencies to submit options for cutting their budgets another 10 percent.

“If this goes away, what are we going to do?” asked Cullison, whose daughter just came off of the waiting list for community services in September. “I need that safety net, need to know [that] when I can’t take care of her anymore, there’s a place for her that’s set, that’s paid for. After nine years, I thought I didn’t have to worry about this anymore.”

Agency officials acknowledge their hands are tied. Their current budget proposal means thousands of people sitting on lengthy waiting lists for community-based care likely won’t get it — and some people who already get services will probably lose them.

The community cuts aren’t the only threatened services at the disability agency. Officials there already approved cutting reimbursement rates paid to care providers in the community and at private institutional settings, saving tens of millions of dollars. They’re saving another $2 million through “utilization review”: revisiting high-cost community care plans to “make sure that all recipients are receiving the services they need,” agency spokeswoman Cecilia Fedorov said, “not more or less.”

“We’ve got some lawmakers telling us there will be some services lost, but we’ll end up okay. There are others telling us that nothing’s safe,” said Amy Mizcles, director of governmental affairs for the Arc of Texas. “The reality is, if funding is not restored for those exceptional items, 13,000 people will lose their waivers.”

What's not clear is if lawmakers can make these service cuts without risking losing federal funding. Federal health care reform requires states to maintain coverage at the same level it was when the Affordable Care Act became law in late March. Stephanie Goodman, spokeswoman for the Health and Human Services Commission, said the agency is asking the Centers for Medicare and Medicaid Services how that requirement will be interpreted, especially when it comes to people who have Medicaid waivers to receive care in the community.

Meanwhile, parents who rely on these community-based services for their disabled children are hoping their families won't be called up for utilization review. Joe Nester, who has a 29-year-old daughter and a 27-year-old son who receive Medicaid waiver care at home, said his kids have undergone the review process twice — and have narrowly avoided cuts in services both times. 

“For the kids, it would’ve been a significant backward step, not to mention our quality of life would’ve become so much worse,” said Nester, of San Antonio. “They need to try to find revenue somewhere else, and not cut services to families who need it.”