Tough Medicaid rules could cause Texas families to lose in-home care

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When Komika Sales gets home from work, her son’s nurse is finishing up her evening routine, giving him his final medication and putting him on a ventilator. After the nurse leaves, Ms. Sales and her son gather on the couch, laughing together as they watch him use his iPad or play with blocks.

Tighter rules from the Texas Department of Human Services may make their bedtime ritual impossible. Her 16-year-old son will no longer be able to receive care, which would take away his ability to live at home.

“It’s awful because the goal is to keep him at home,” Sales said of her son, Mikahi Neal.

Under rule changes proposed by the state Health and Human Services Commission, adults would not be allowed to “leave their home for any period of time” while a nurse is providing services, according to documents obtained by The Texas Tribune.

Medicaid provides Neal with more than 150 hours of “personal care” per week, but the proposal would affect that type of care. Personal care allows for more continuity of service for medically complex children. It also allows Sales to work as an x-ray technician out of her home and even stay overtime to help cover her out-of-pocket medical expenses.

If the rule change goes into effect, Sales would have few options: hire an extra caregiver to stay at home while she works (something she can’t afford), place her children in a care home-like facility, or quit her job and stay home full-time with a nurse. Neil, who has a congenital heart condition, is paraplegic, is undergoing chemotherapy for cancer, and requires constant care.

“If I don’t work, I don’t have a place to live,” Sales said of being a single mother. “I don’t have a backup plan or a support system, because I am my own backup plan and support system.”

Even parents who work from home are concerned the changes will prevent them from leaving the house for reasons such as grocery shopping, doctor’s appointments or other errands.

Thousands of families could find themselves at this crossroads once the rule change officially goes into effect: The state said more than 7,000 people received personal care in 2022, potentially including adults who receive services through other specialty care programs.

Asked why HHSC proposed changing the rules, spokeswoman Jennifer Ruffcorn said in a statement it was “to clarify existing personal care regulations and policies.”

The department said this is how they’ve always interpreted the policy, so HHSC is “not setting new or different expectations about how this policy should be monitored or reported,” Ruffcorn said. But advocates say the formal proposal could cause confusion for care providers and affect families’ eligibility to receive services.

Nurse monitoring

Jaline Williams’ 16-year-old daughter can’t use the toilet on her own. She has neurogenic bladder, colonic motility disorders and fecal embolism, and nurses spend hours at her home helping her with a catheter and bowel program. Sometimes the entire process can take four or five hours.

Williams works from home and is on disability, but the rule change means she will have to bring her daughter and her nurse to doctor’s appointments.

“If my mom had to go somewhere and I was in the middle of doing this job, I personally couldn’t leave my patients and go after her,” said Williams’ daughter, Ifi Ozo, a private nurse. “I can’t do that. The patient comes first.”

Some advocates argue that the rule change not only harms patients and their families, but also disparages nurses by equating the care they provide with child care and suggesting that nurses need to be accompanied by another adult at all times.

“I really don’t want someone hanging around me and watching what I’m doing. I know what I’m doing,” Ozo said. “I went to school for that. And then it’s like, ‘Okay, you don’t trust me?’

Ozo said she has no time to do anything other than medical care for Williams’ daughter during her shifts, whether Williams is at home or not.

Jessie Sage Chen, a registered nurse and consultant, has a daughter with multiple disabilities, including cerebral palsy, but her job prevents her from caring for her and she needs someone to monitor her medical needs.

“One of the pillars of nursing is autonomy,” says Sage Chen, “the ability to independently make decisions that are best for the patient. When you hold others responsible for nurses’ actions, you take away their autonomy.”

Sage Chen said it was unfair to call caregiving “childcare” just because a parent is away.

“The need for someone to look after a child with medically complex issues is inextricably linked to the level of care the child needs,” Sage Chen says, “so you can’t separate the two. A child receiving PDN is not being looked after like a babysitter, because a babysitter can’t look after that child.”

“This clearly denies the reality of the level of care that child needs,” Sage Chen said.

Ongoing discussion

The draft rules have confused advocates, not only because it’s not clear why the change is needed, but also because the concept has been introduced before and sparked public backlash, they said.

“We don’t really understand why,” said Terry Anstey, an attorney with Disability Rights Texas, a disability advocacy group. “The HHS board’s reasoning keeps changing.”

Anstee said HHSC has cited concerns from the Texas Legislature, the Centers for Medicare and Medicaid Services and the Board of Nursing on various occasions as reasons for changing the rule. He said he has found no evidence to support those assertions.

In a statement, HHSC spokesman Ruffcorn said the move was “intended to clarify existing PDN rules and policies that have been in place for several years.”

Since 2015, the Department of Health and Human Services has interpreted current rules as meaning that a caregiver cannot be left home alone with a child “regularly or routinely” while a parent is at work because that constitutes respite care and is not covered by insurance, it said in a statement.

However, neither of the existing policies the committee cited (both the Texas Administrative Code and the Texas Medicaid Provider Procedures Manual) state that an adult must be in the home with the caregiver at all times. Part of the manual does say that a responsible adult is an essential component of a “safe and effective” service, but in that context, the child must already be living with an adult providing any other form of care.

At the same time, the manual states that these nursing services “may essentially amount to non-medical, non-skilled activities in the course of relieving a parent, guardian, or responsible adult of burdens, childcare, or the provision of nursing care.”

According to documents obtained by The Texas Tribune, HHSC drafted a similar proposal in 2021 after meeting with private nursing care companies and managed care organizations — the health care companies that provide Medicaid health insurance plans to Texans. Managed care organizations would cover the immediate costs of care but are funded by the state, and if they report an increase in the cost of care, the state would have to increase the amount they pay.

But the draft was leaked to the public, resulting in HHSC receiving “approximately 130 emails from interested parties (including parents and providers),” the document states.

“The parents’ primary concern was their inability to work outside the home and afford necessary child care costs,” the document says of those emails.

The commission released a draft of the current rule change earlier this year, but it’s unclear if and when the rule will be formally implemented. In a statement, HHSC said the rule would be subject to a public comment period and discussion at a Medical Advisory Committee meeting before it could be formally proposed to the Texas Registry “around summer 2024.”

Trying to work

Some parents have already experienced the impact of not having access to personal care services: Laure Elmer, who lives in Pleasanton, Texas, a suburb of San Antonio, said her son has multiple disabilities and requires ongoing care from a personal care service.

Although her son is eligible for services, she lives in a rural area and couldn’t find a nurse to actually care for him, so she left her full-time job as a pediatrician and now provides her son’s medical care herself.

“I was practicing and enjoying what I was doing,” Elmer, 59, said of her 16-year-old son, who has cerebral palsy. “We briefly considered putting him in an institution, but we couldn’t force him to do that. It turned out that staying at home with our children was a much better choice. But I had the luxury of having a working husband.”

As for the sales job, she said you have to work no matter what.

“We have expenses. We have mortgage payments, car payments, insurance payments,” Sales said. “We have to eat, so we have to work to buy groceries. Plus, everything at the grocery store is more expensive than it was five years ago, so if we’re not working, how are we going to pay the bills?”

Sales said he hopes HHSC will listen to public feedback, but he feels the agency is always “trying to cut budgets away from those who need it most.”

“It always feels like they’re targeting kids who are in poor health,” Sales said. “They need to rethink this proposal.”

Neelam Vohra is a 2023-24 New York Times Disability Reporting Fellow based at The Texas Tribune through a partnership with The New York Times and the National Center on Disability and Journalism, based at Arizona State University’s Walter Cronkite School of Journalism and Mass Communication.

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