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As Komika Sales returns home from work, her son’s nurse completes his evening routine — giving him his last medications, connecting him to his ventilation machine. After the nurse leaves, Sales and her son gather on the couch, giggling together as he uses his iPad or plays with blocks.
A stricter rule from Texas’ human services agency might make their bedtime ritual impossible. Her 16-year-old son could no longer receive nursing — therefore taking away his ability to live at home.
“It’s awful because the whole goal is to keep him at home,” Sales said of her son, Micahi Neal.
A proposed rule change from the state’s Health and Human Services Commission would not allow an adult “to be away from the home for any period of time” whenever a nurse is providing services, according to documents obtained by The Texas Tribune.
Medicaid offers Neal more than 150 hours of “private duty nursing” per week, the type of care that the proposal would affect. Private duty nursing allows for more continuous services for medically complex children, and for Sales, it’s made it possible for her to work outside the home as an x-ray technician and even work overtime to afford his out-of-pocket medical expenses.
If the rule change became official, Sales would have few options: to pay for an extra caregiver to stay home while she works, which she can’t afford, to put her child in an institution like a skilled nursing home, or, to quit her job and stay home with the nurse at all times. Neal, who has a congenital heart defect, is paraplegic and has undergone chemotherapy for cancer needs constant care.
“If I don’t work, then there’s no roof,” Sales said of being a single mom. “I don’t have a backup plan or support system because I am the backup plan and the support system.”
Williams has an entire room in her house in Katy dedicated to various treatments for her daughter complete with a hospital bed, linens, gloves, paper towels and other needs.
Credit:
Annie Mulligan for The Texas Tribune
Williams works from home and has her own disability. But under the rule change, she would have to bring her daughter and her daughter’s nurse to doctor’s appointments with her.
Credit:
Annie Mulligan for The Texas Tribune
Even parents who work from home fear the change could impact their ability to leave the house for any reason, such as buying groceries, going to doctors appointments or running other errands.
Thousands of families could face these crossroads if the rule change became official. More than 7,000 individuals received private duty nursing in 2022, according to the state, though that may include some adults who receive the services through other specialized health care programs.
When asked what spurred HHSC to propose the rule change, spokesperson Jennifer Ruffcorn said in a statement that they were “clarifying the existing private duty nursing rules and policy.”
According to the agency, this is how they’ve always interpreted the policy. Because of this, HHSC “is not setting new or different expectations about how this policy is monitored or reported,” Ruffcorn said. But, advocates say, the formalized proposal could create confusion for nursing provider companies and affect families’ eligibility for their services.
Nurse monitoring
JaReen Williams’ 16-year-old daughter can’t use the bathroom on her own. She has a neurogenic bladder, colonic dysmotility and fecal impaction, so a nurse spends hours at their house helping with her catheter and bowel program. Sometimes, the entire process can take four or five hours.
Williams works from home and has her own disability. But under the rule change, she would have to bring her daughter and her daughter’s nurse to doctor’s appointments with her.
“If Mom has to go somewhere, and I’m in the middle of doing all this, I personally wouldn’t be able to leave my patient and then follow Mom around,” Ify Ozoh, the private duty nurse for Williams’ daughter, said. “I can’t do that. My patient comes first.”
Some advocates have argued the rule change wouldn’t just harm patients and their families — it also denigrates nurses by equating the medical care they provide with child care, or suggesting another adult needs to be with the nurse at all times.
“I really don’t want anyone hovering over me trying to watch what I’m doing. I know what I’m doing,” Ozoh said. “I went to school for it. It will make me feel like, ‘OK, don’t you trust me?’”
Ozoh said she doesn’t have time during her shift to do anything non-medical for Williams’ daughter, regardless of whether or not Williams is home.
Jessie Sage Cheng receives a towel from a nurse to help wipe the face of her 11-year-old daughter at their home in Duncanville. Cheng has a nurse to help her care for her daughter as she balances working as a nurse herself, going to grad school, and being a single mother.
Credit:
Shelby Tauber for The Texas Tribune
Jessie Sage Cheng, a registered nurse and consultant, has a daughter with multiple disabilities, including cerebral palsy. But she can’t care for her own daughter because of her work, and she needs someone else to monitor her daughter’s medical needs.
“One of the pillars of nursing is autonomy,” Sage Cheng said. “It is being able to make autonomous decisions that are in the best interest of the patient. If you make somebody else responsible for what the nurse is doing, you’ve just stripped them of their autonomy.”
Sage Cheng said it isn’t fair to call nursing care “child care” just because a parent is away.
“The need for someone to watch your child who has medical complexities is inextricably linked to the level of care that they need,” Sage Cheng said. “And so you can’t separate it out. You can’t say that a child receiving PDN is just being taken care of like a babysitter would — because a babysitter couldn’t take care of that child.”
“It is unequivocally denying the reality of the level of care that that child needs,” Sage Cheng said.
An ongoing debate
The rule draft has befuddled advocates, both because it’s not clear why the change is necessary, and because the concept has been introduced before and received public rancor, they said.
“It’s not really clear why,” said Terry Anstee, an attorney for disability advocacy organization Disability Rights Texas. “The rationale from the Health and Human Services Commission keeps changing.”
Anstee said HHSC has cited concern from the Texas Legislature, the Centers of Medicare and Medicaid Services, and the Board of Nursing on different occasions as reasons for making the rule change. He said he’s found no evidence to back any of these claims.
Ruffcorn, the HHSC spokesperson, said in a statement that the move was “intended to clarify the existing PDN rules and policy that have been in effect for several years.”
Since 2015, HHSC has interpreted the current rules to mean that parents cannot “regularly or routinely leave” a nurse at home alone with a child while at work because that would qualify as respite care, which isn’t covered, her statement said.
But neither of the existing policies the commission referred to — both in the Texas Administrative Code and the Texas Medicaid Provider Procedures Manual — specifically say an adult must stay home with a nurse at all times. One part of the manual says that responsible adults are “essential elements of safe and effective” services, but in the context that a child must already reside with an adult who provides them with all other forms of care.
At the same time, the manual says these nursing services “may inherently result in the relief of the parent, guardian, or responsible adult, child care, or some non-medical, non-skilled activities in the course of providing nursing care.”
Left: Sage Cheng wipes her 11-year-old daughter’s face at their home. Right: Sage Cheng holds her daughter’s hand as they lay in bed together. Cheng says her daughter’s absolute favorite thing to do is snuggle with her mom in their bed.
Credit:
Shelby Tauber for The Texas Tribune
According to the documents obtained by The Texas Tribune, HHSC drafted a similar proposal in 2021 after meeting with private duty nursing companies and managed care organizations, the health care companies that provide Medicaid health plans to Texans. Managed care organizations foot the immediate bill for care, but the state funds them — and when they report higher costs of care, the state has to increase how much it pays them.
But this draft was leaked to the public, as a result, HHSC received “around 130 emails from stakeholders (including parents and providers),” according to the documents.
“A main concern from the parents was the inability to work outside of the home and paying for necessary child care,” the documents said of these emails.
The commission introduced the current rule change draft this year, but it’s unclear if and when the rule will become official. In documents, HHSC said the rule could officially be proposed in the Texas Register “around summer 2024” following periods of public comment and the Medical Care Advisory Committee discussing it at a meeting.
Trying to work
Some parents have already seen the fallout of not being able to access private duty nursing services. Laure Elmer lives in Pleasanton, Texas outside of San Antonio and her son has multiple disabilities and needs the continuous care private duty nursing would provide.
He’s eligible for services but because she lives in a more rural area, she hasn’t been able to actually find a nurse to perform that care — so she had to quit her job as a full-time pediatrician and now provides medical care for him herself.
“I was practicing and enjoyed what I was doing,” Elmer, 59, said of her 16-year-old son, who has cerebral palsy. “We had entertained [putting him in an institution] as a fleeting thought, but I can’t do that to our son. It became a choice that I would much rather stay home with my child. But I had the luxury of a husband who was working.”
For Sales, she said she has to work no matter what.
“I have expenses. I have a mortgage to pay, I have a car note to pay, I have insurance to pay,” Sales said. “We’ve got to eat, so I’ve got to work to buy groceries. And on top of it, everything in the grocery store costs higher than what it did five years ago. So if I don’t work, how am I supposed to afford anything?”
Sales said she hopes HHSC listens to public comment, but feels HHSC is always “trying to cut the budget from the ones that need the help the most.”
“I feel like they’re always picking on the medically fragile kids,” Sales said. “They need to rethink this proposal.”
Neelam Bohra 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, which is based at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University.
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