Texas family fighting to restore Medicaid coverage for disabled sister after part of health plan was denied

MONTGOMERY COUNTY, Texas — A Montgomery County woman is fighting to restore critical Medicaid services for her sister, after a recent denial took away some of the in-home help they’ve relied on for years.

Catherine St Clair is the full-time caregiver for her sister Lisa, who has severe cerebral palsy, is non-verbal and ventilator-dependent. Lisa was just 10 months old when she was placed in foster care with St Clair’s parents, recovering from extreme abuse.

“When we got her, she’d just come out of the hospital and she was in a body cast,” she said. “Doctors told us that she wouldn’t live past 10 to 12 years because of the severity of her condition.”

Now at 51 years old, Lisa continues to defy the odds. But St Clair said caring for her has new challenges as of late.

For years, Lisa’s Medicaid plan covered over 100 hours of assistance from skilled nurses and home health aides, including 30 hours a week of protective supervision — in-home support for people with physical or cognitive impairments when caregivers are unavailable.

However, that benefit was suddenly denied in mid-February by Lisa’s new Medicaid managed care provider, Community Health Choice.

“Explain to me how she doesn’t fit the criteria. Explain to me how you can justify, after 12 years of precedence, removing something that’s so critical to keeping her safe,” St Clair said.

The reason for the denial? A letter from the provider said Lisa doesn’t qualify because she’s never left home alone.

“Protective supervision is needed to keep you from hurting yourself if you are left at home alone. The records do not show you are left home alone,” the denial letter stated.

“The logic that they’re using in this statement is illogical. It just is,” St Clair said. “Because it’s saying that they are giving it to somebody who can’t be left at home alone. But because we never leave her alone, she doesn’t qualify.”

St Clair told KHOU 11 News that she previously used protective supervision overnight to help care for Lisa three or four days a week. Without the service, she said, there are now gaps in Lisa’s care.

“I’m going to compensate for it and the way I compensate for it is I just don’t sleep,” she said. “I have a little cot that I take in her room and I try to lay on it so I can sleep with one eye open.”

After the initial denial, St Clair learned that a first appeal had been submitted on her behalf by Community Health Choice staff without her knowledge. When it was denied in April, she requested a Medicaid fair hearing with the Texas Health and Human Services Commission in May.

In July, she received a second denial. Now, she’s submitted a request for an administrative review of the fair hearing — the next step in what’s become a months-long battle to restore the coverage her sister had for years.

“I’m not stopping,” St Clair said. “It’s not just for Lisa, it’s for millions of people. And I’ll be a voice for them if they don’t have one.”

Terry Anstee, an attorney with Disability Rights Texas, told KHOU 11 News that changes in coverage like this aren’t unusual, especially when patients switch managed care plans.

“It could be that the managed care organization is reinterpreting the rules in the state’s STAR+PLUS handbook, or creating new internal policies,” Anstee said. 

Anstee advises families to appeal when they believe a denial is unfair, and notes that even if early appeals are denied, some cases can be ultimately overturned.

While St Clair’s battle is with a Texas-based managed care organization, broader questions loom about how federal Medicaid policy may be influencing local decisions.

“There’s all this discussion of multi-billion dollar fraud, and what they’re saying to me with this denial is that we’ve been fraudulently taking these benefits. I take offense to that,” St Clair said.

After KHOU 11 News reached out for comment, Community Health Choice contacted the family and agreed to conduct a new evaluation of Lisa’s case this week. In a statement, the provider said it is committed to “treating every member with dignity and respect,” but declined to comment on the specific situation.