Midway through a conversation about her 14-year-old, Claire, Jamie Davis Smith felt the need to change direction for a moment, to highlight the happiness her daughter can experience.

“She does have a good relationship with her siblings,” Smith said recently. “She likes to have ice cream and go to the playground with them. She loves to go swimming and to movies. Despite all of the problems, she’s very happy and lets us know what she likes and doesn’t like.

“I think she deserves to grow up with her siblings, and her siblings deserve to grow up with her.”

Diagnosed with a chromosomal abnormality so rare that it doesn’t even have a name, Claire has epilepsy, chronic lung disease, asthma and autism. Part of her brain is missing. Her heart is in the wrong place, and she must wear a compression suit to keep other organs from misaligning.

She is nonverbal and in diapers. She is strapped into a wheelchair and must be watched vigilantly in case she falls, which inevitably happens, causing broken bones. She also must be monitored, throughout the night, for signs of seizures, choking and vomiting, which could prove fatal.

“My husband and I haven’t had a full night’s sleep in 14 years,” Smith said.

Claire has benefited from a nearly 40-year-old Medicaid program, the Katie Beckett Waiver Program, that enables families who earn too much to qualify for regular health care coverage to tap into home-based services. Without that aid, many families, including Claire’s likely would have to place their children in an institution.

Tennessee this month became the 50th state to offer a Katie Beckett program or one like it. But the pandemic has worsened worker shortages in home health care, and advocates fear tightening budgets might mean cuts to the program.

Smith lives in Washington, D.C., but she and her husband want to move to Maryland to take advantage of better special education opportunities for their other three children, two of whom have autism. But in Maryland, Claire would be waitlisted for the Katie Beckett program, and might well age out of it before she is ever permitted to enroll.

That has caused Smith’s family to consider options they once regarded as unthinkable: putting Claire in foster care or breaking up the family to qualify for regular Medicaid.

One well-meaning child welfare official in Montgomery County, Md., suggested another long-shot possibility: a GoFundMe page to cover the hundreds of thousands of dollars it costs annually to care for Claire at home.

“It’s horrifying, it’s inhumane, and it doesn’t make any financial sense,” said Smith. “From my perspective, it seems that Maryland is hellbent on breaking my family apart.”

Smith’s family dilemma spotlights the shortcomings of Medicaid’s home- and community-based programs. In many states, enrollment is capped because of insufficient funding and a shortage of home health care workers. That shortage has deepened during the COVID-19 pandemic as home nurses have taken better paying jobs at hospitals.

And now, with COVID-19 ravaging state budgets across the country and no prospect of help from Washington, some advocacy groups fear that there will be less money for home- and community-based services. States and the federal government jointly fund Medicaid.

“Because they are optional services, and a group of services that states spend a significant amount of money on, they are likely to be first on the chopping block when states experience reductions in revenue,” said Jessica Schubel, a senior policy analyst at the Center on Budget and Policy Priorities, a progressive think tank based in Washington, D.C. Such cuts occurred after the Great Recession, she said.

These programs’ great expenses and low enrollment numbers make them tantalizing targets. Medicaid’s home and community-based programs, including the Katie Beckett program, serve a small portion of the Medicaid population — less than 5.6% of the people enrolled in Medicaid. But because of the high cost of their care, they account for an outsize share of overall Medicaid spending, more than 15%.

Before the pandemic, states spent more on Medicaid than any other single expenditure aside from K-12 education. Unemployment during COVID-19 has only increased Medicaid enrollment, further driving up state costs.

Because Medicaid is an entitlement program, meaning that anybody who meets the eligibility requirements can enroll, it’s difficult for states to find savings. Home and community-based services are one area in Medicaid programs in which states have a freer hand to reduce costs.

A Long Wait in Some States

The specific program that helps Claire is named for Katie Beckett, who was four months old in 1978 when she contracted viral encephalitis. It left her partly paralyzed, unable to swallow and barely able to breathe on her own. Her parents wanted to care for her at home on a ventilator, but the costs were prohibitive, and the family earned too much for Medicaid, which at the time didn’t cover home health care in any case. Katie remained in a hospital in Cedar Rapids, Iowa, at a cost of $12,000 a month, six times what it would have taken to care for her at home.

Her parents’ lobbying, which eventually reached Ronald Reagan’s White House, led to the creation of the Katie Beckett Waiver Program, which allows severely ill children to qualify for Medicaid reimbursement for medical services delivered in their homes, even if the family earns too much to qualify for regular Medicaid. In some states, recipients are eligible until they are 21, but the program ends sooner in others.

Katie Beckett herself was able to benefit from the program.

“Katie did so well at home,” her mother, Julie, said recently. “At first nurses didn’t think she’d make it more than a couple of months, but she did.”

Beckett graduated from college, lived independently while continuing to receive home health care though an adult Medicaid home health care program and held a series of jobs. She died in 2012, at age 34.

Some states take all children who qualify. But in a 2018 survey, the Kaiser Family Foundation identified five states with waitlists: Connecticut, Maryland, Oregon, Texas and Utah.

Charles Gischlar, a spokesman for the Maryland Department of Health, said the state caps enrollment in its version of the Katie Beckett program at 200 children and currently has a waitlist of 164. That waitlist has increased over the years, he said, more than doubling since 2013.

Virginia was not on Kaiser’s list, but it also had a waitlist several years ago when Cara Coleman tried to get services for her daughter Justice, who had cerebral palsy and required tube-feeding, an ostomy and catherization. Stuck on the list, the family got limited help but not money for medical equipment, nursing care or modifications to their house to make care easier. Justice died at age 11 in 2017.

Coleman is now a project director for Family Voices, a support network that helps families with medically fragile children find support services. Coleman said there should be federal standards for Medicaid home-based services.

“Would we benefit by having more standards and not so much variation across states?” she said. “Yes, and that would mean people wouldn’t be shopping for Medicaid programs across state lines and not having to look at options like divorcing or going into debt or having their children go without.”

But even qualifying for the program is no guarantee a child will get needed services. In many parts of the country, particularly in rural areas, there aren’t enough skilled home care workers to meet the need.

“There aren’t enough boots on the ground,” said Tara Anne Pleat, an attorney in upstate New York who represents families with children with special needs. “That’s where everything gets hung up. The enrollment is available, but effectiveness is something else. There’s just not enough manpower to provide meaningful support.”

Dr. Roy Maynard, medical director of Pediatric Home Service Minnesota, which provides in-home care, said his company recently conducted a retention survey and found that only 15% of its nurses remained on the job after two years.

Maynard said agencies like his, hamstrung by low Medicaid reimbursement rates, can’t pay as much for nurses as hospitals can.

“Imagine being a business and you turn over 85% in 24 months,” Maynard said. “Just imagine how that works.”

Maynard has co-authored studies suggesting that as a result of improved technology that can keep children with severe medical conditions alive, the population of children who would benefit from home health care services is growing.

Pleat and others say the pandemic, which has prompted hospitals to hire more nurses to replace those who have fallen ill, has deepened nursing shortages.

That is why she, Maynard and others in the home health care field dread the prospect of states further lowering Medicaid reimbursement rates as a cost-saving response to their strained budgets.

No states have yet indicated they are targeting home services as state legislatures begin their sessions, where dealing with their tight state budgets will be a top priority.

Gischlar, with the Maryland health department, said in an email that “the state does not anticipate cutting program services nor has the state cut services during prior economic downturns.”

“In fact,” he added, “Maryland has implemented two 4% rate increases within the last six months.”

‘A Lifeline’

Smith, Claire’s mother, said her daughter has an excellent caregiver, but it is hard to find a substitute when that caregiver can’t work. That has gotten worse during the pandemic.

She described the services Claire receives through the Katie Beckett program as “a lifeline” not only for Claire, but for Smith and her husband as well.

Both are attorneys. He works for a labor union in Washington, D.C. She has done some teaching, freelance legal work and writing, but largely put her career on hold after Claire’s birth. The family has health insurance through the union, but it does not cover the extraordinary costs of Claire’s care, Smith said. Claire’s medical care would easily exceed the amount the two bring in.

Through the Katie Beckett program, Claire and her family have received hearing aids, a wheelchair and a hospital bed that is essential for helping Claire breathe at night. Claire also gets a personal care assistant for 14 to 15 hours a day.

It also helps pay for the thousands of dollars of copayments for Claire’s medicine, home therapy and numerous doctor visits, all of which help to minimize what Smith said would be far costlier hospitalizations.

The decision to move across the border to Maryland is not one Smith and her husband take lightly. They feel that their other children are suffering because of what they regard as deficient special education services in D.C.

They contemplated putting Claire in foster care, which would make her eligible for all the Medicaid home services she gets now. They also have consulted with lawyers about the possibility of divorcing and the family living apart, with Jamie retaining custody of Claire and qualifying for Medicaid.

The choices the family faces, including putting Claire in an institution, Smith said, are cruel and nonsensical.

“It seems hopeless and I can’t figure out the rationale, because everyone agrees it costs more and leads to worse health outcomes,” Smith said.

She paused and added, “I don’t know how I’d explain any of this to other kids.”

Stateline is a nonpartisan, nonprofit news service of the Pew Charitable Trusts that provides daily reporting and analysis on trends in state policy.

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