Родитель в Северной Дакоте вынужден лично ухаживать за дочерью с тяжелыми нарушениями из-за нехватки квалифицированных сиделок

Elliott, now 6, was born with a rare heart defect requiring a transplant before she was old enough to roll over. Complications caused seizures and two strokes, leaving her with cerebral palsy and limited mobility. She also lost blood flow to her right foot the night of the transplant, resulting in the loss of her toes and heel. “We were full-on ICU in our home,” said Kris, who lives in Mandan, North Dakota, just west of the state capital of Bismarck. “We were doing everything they were doing.” Elliott’s needs are significant enough that she qualifies for Medicaid-funded care at home. But her parents struggled to find available workers to do the job. Even when they could find home care aides, they worried about the quality of the care; Kris said she once found one of Elliott’s aides drunk on the job. Eventually, Kris left her career as a program coordinator for a nonprofit that provides services for people with disabilities and took over her daughter’s care herself. States are now facing decisions about how to craft programs narrow enough to control costs and follow Medicaid rules, but broad enough to reach the families they are designed to help. A major challenge for these programs is determining whether parents are providing what Medicaid calls “extraordinary care” — activities that exceed the normal care that parents would provide to children without exceptional needs. The Ferderers have firsthand experience with this requirement. In April 2024, they were among the first North Dakota residents to apply for the state’s new Family Paid Caregiver Pilot Program. By the time the Ferderers applied for the pilot, then-3-year-old Elliott’s needs had evolved but remained intensive. The Ferderers recalled she took about eight daily medications and attended three sessions a week each of speech, physical and occupational therapy. Her parents managed tube feedings, frequent vomiting, diaper changes, daily stretches, vital checks, custom braces and the need for constant cleaning with hospital-grade products to keep germs out of the house, a potentially life-threatening intrusion for an immunosuppressed child. “I could not imagine — with everything I was doing when I brought her home — if someone had looked at me and said, ‘I’m sorry, what you’re doing is not extraordinary to any other 9-month-old,’” Kris said. “I would have lost it.” But a few years later, that was what happened. Their application was denied after they scored too low on the state’s assessment of Elliott’s extraordinary care needs. She said that participating in the program has benefited her family financially, but also validates the way she sees herself. “I am a very highly qualified caregiver and I didn’t get this way just because,” she said. “My child’s life depends on it. … This is valuable lifesaving work that is being done.” Paying families to care for their own children might seem unusual. But families and supporters of such programs say it’s nearly impossible to find qualified workers to provide the care these children are entitled to. What’s more, many of the younger children who qualify for this type of service can’t safely attend regular child care programs. “For many of these parents who have to perform probably 24/7, it’s their only source of income,” said Dr. Mark Brittan, a professor in the pediatrics department at the University of Colorado School of Medicine. “They can’t leave the house for the most part.” Brittan coauthored a study on Colorado’s program to pay parents and other caregivers to become certified nursing assistants for their children, which allows them to be paid through Medicaid. Federal Medicaid rules generally don’t allow for caregiving payments to people who already have a legal responsibility to care for a family member, such as a parent with a minor child or a husband caring for a wife. But relaxed rules during the pandemic, coupled with an acute demand for more caretakers, paved the way for at least 37 states to seek exemptions, many of which continued after the temporary rules expired. These programs have proven extremely popular with families, though states have wide discretion in how many parents they allow to participate. Parents who qualify for North Dakota’s program can earn about $166 per day — up from the daily rate of about $77 that parents of minors received when the program began in 2024. They can bill for up to five days per week, equating to a maximum annual salary of about $43,000. Veronica Zietz, executive director of the North Dakota Protection & Advocacy Project — an independent state agency that supports the rights of state residents with disabilities — said the surge of applicant families indicates a need for more funding, both to expand the program’s reach and to increase the amount of money each family takes home. “This program has so much potential to fill a gap that is allowing people and families in North Dakota to just fall into poverty, to be exhausting themselves to the point where they just don’t have options,” Zeitz said. Developing a definition of “extraordinary care” has become one of the primary tools states use to keep down costs and prevent fraud — a concern highlighted by the Trump administration’s targeting of Medicaid programs. The administration has paused more than $1 billion in Medicaid funds to California and Minnesota until the states provide additional documentation that claims there are legitimate. Idaho cited cost overruns and allegations of fraud when it announced in 2024 it was ending its parental caregiver program. After Indiana, citing budget problems, introduced significant changes to its program, the state faced a lawsuit from two mothers who said their children would end up institutionalized. Indiana ended up reinstating reimbursements for those mothers, and state advocates hope the decision will benefit other families in similar situations. Kim Musheno, senior director of Medicaid policy at the disability advocacy group The Arc of the United States, said any potential fraud should be addressed without funding cuts that will hurt children and families. “It just seems awfully convenient to call anything you wanted to cut fraudulent,” she said. Some states, like Arizona, initially created family caregiving programs with less stringent participation rules, but that presented another problem: high costs. Jon Meyers, executive director at the Arizona Developmental Disabilities Planning Council, said when the state launched its Parents as Paid Caregivers program in 2020, it was desperately needed after the pandemic exacerbated an existing shortage of home health care workers. But, he said, the state failed to enact strict guardrails on what kind of work parents could be paid for and how many hours they could bill for. “There is a broad sense in Arizona that parents of minor-age children are to some degree taking advantage of the system, that they are asking for more than their children really need,” Meyers said of the program’s critics. “It started out as a very needed program, and it ended up being a program that was blowing a hole in the budget.” In 2025, the state’s Division of Developmental Disabilities faced a $122 million budget shortfall — a sum lawmakers blamed at least in part on the parent caregiver program. Brandi Coon, president of the Raising Voices Coalition, an Arizona advocacy group, said program costs need to be considered in context. Previous budgets was kept artificially low, she said, because families were not able to use all the care their children had been authorized to receive from outside workers. Eliminating the payments to parents would not make the needs disappear. It would just leave parents with unpaid work and do nothing to solve the underlying issue, she said. “If we all of a sudden remove 5,000 to 10,000 caregivers overnight, we don’t have the workforce to replace that,” she said. “Institutionalization — whether that’s a hospital, a group home, another placement — would be drastically more expensive.” Arizona legislators agreed to continue the program, but capped paid care by parents of minor children at 40 hours a week, even if the children are authorized for more Medicaid care hours. The state also announced plans for new age-based restrictions on assessing extraordinary care. For example, parents can’t be reimbursed for time spent helping a child younger than 6 with toileting — the idea being that parents would be expected to help any young child with that task. In response to strong backlash from parents and advocates, the state paused implementation of the new rules last fall. In North Dakota, the Ferderers ended up appealing the state’s decision to exclude them from the family caregiving pilot. They argued that the extraordinary care assessment failed to account for Elliott’s medical complexity, unfairly excluded some care tasks from consideration due to her age and was created outside the legally required public process. “It just seemed absolutely insane that she didn’t qualify,” said Matthew Ferderer. Tina Bay, a director overseeing developmental disabilities for the state’s Department of Health and Human Services, was one of four state employees who created the extraordinary care needs assessment. She said the team researched protocols in other states but could not find a standardized method. “It’s just really difficult trying to parse out what truly is extraordinary,” Bay said. “I think that is probably the most difficult thing that we’ve struggled with as a state.” Dr. Kristie Malik, a complex care pediatrician and member of the American Academy of Pediatrics executive committee on home care, said states should seek input from clinicians when designing assessments for extraordinary care. Parents, she added, often see the distinction clearly. “They see it very black and white in the sense of ‘I need time to parent, and I need time to be a medical caregiver,’” she said. “When you actually look at the child, you can easily see how much more effort the family needs to put in.” For the Ferderers, the chance to change the way North Dakota makes these decisions in the future made the appeal worth pursuing, even after it became clear the court case would not guarantee Elliott a spot in the program. Though Elliott’s medical needs are still complex, Kris said she’s social and excited to start kindergarten this year. The school will provide a full-time one-to-one aide, who Kris plans on training herself. “If we had been able to be on that program, it would have been life-changing,” Kris said. “That’s why we push for this. It’s about us and Elliott, but it’s more so about they need to get this right.” This story first appeared in The Hechinger Report. Read the original here.