Heather Johnson feeds her daughter after school. She can’t work because she can’t secure home health services. Under current MaineCare rules, she can’t get paid to be Adaline’s caregiver, although an outside caregiver could be paid. Sofia Aldinio/Staff Photographer

SEARSPORT — Adaline Johnson waves and smiles as her mother arrives to pick her up from preschool on a picturesque spring afternoon.

Heather Johnson and a staff member hold the 5-year-old’s hands as they leave, walking with her so she won’t fall down.

Adaline has Pitt-Hopkins syndrome, a rare genetic disorder that causes developmental delays and intellectual disabilities, among other health conditions. Adaline is non-verbal, has difficulty walking, still wears a diaper because she can’t communicate that she needs to use the bathroom, and needs constant care.

Johnson does what she can, but Adaline’s care needs are relentless. She can be left alone only for a few minutes at a time.

“You can’t have a plan for the day,” Johnson said. “You’re her everything. You just do whatever she needs at the moment, and it never stops.”

The Searsport family qualifies for MaineCare coverage to hire home health care for Adaline. But workforce shortages are acute in that industry, and they have been unable to find the help.

Johnson can’t work because she can’t secure home health services, and under current MaineCare rules in the state, she can’t be paid to be Adaline’s caregiver.

That could be about to change, thanks to lobbying from parents’ groups, home health agencies and bills submitted by Rep. Jessica Fay, D-Raymond, and Sen. Joseph Baldacci, D-Bangor. While both bills had the same end goal – extending MaineCare coverage to parent caregivers – Fay’s is the one that passed out of committee with bipartisan support and is awaiting votes in the Maine House and Senate.

It’s not clear how many families might qualify for the support or how much the program might cost. No fiscal impact notes have been attached to the bill. The federal government covers about 73% of MaineCare costs and the state pays for about 27%, according to the Kaiser Family Foundation.

“Adaline is my full-time job and I should be paid for it,” said Johnson. The family includes her husband, Andy, an IT professional with the U.S. Customs and Border Patrol, and boys Oliver, 10, and Jack, 7.  “It’s more than about the money. It’s about being appreciated, and valued for what you do.”

Heather Johnson, 38, returns home with her daughter Adaline, 5, in Searsport. Heather has stopped using the handicap placard so Adaline can get more exercise walking from the school to the car. Sofia Aldinio/Staff Photographe

Adaline has bright blonde hair, loves music and having books read to her, but sometimes has difficulties if her routine is broken.

“She wants to do the typical things children do, but she just can’t,” Johnson said. “When she’s older, she may be able to speak one to five words, we just don’t know yet.”

A few miles away, the Dole family in Belfast is going through a similar situation.

Andrea Dole is a caregiver for her 7-year-old son James, who has microcephaly and cerebral palsy. She does receive some home health assistance, but not enough to cover the hours of care that James needs. And because there are often gaps in coverage when nurses leave – they’ve had 17 nurses in the past five years – maintaining a job other than caregiving for James is impossible, she said.

“I don’t want to be paid to be James’ mom,” Dole said. “I want to be paid for the skilled nursing tasks that are required for him to live a dignified life.”

States set up their own rules and standards for Medicaid – which is called MaineCare in this state – so it’s difficult to know how many states pay parents to be at-home caregivers for special needs kids, said Alice Burns, associate director of the Kaiser Family Foundation’s program on Medicaid and the uninsured. But it’s clear that a growing number of states are doing so, she said.

“There is a well-documented shortage of health care workers, and so if there aren’t enough workers, (paying parents to be caregivers) is a strategy more states are using to fill that void,” Burns said. “If you don’t have a worker to care for your (special needs) child, you can’t work. It’s just not possible.”

James, 7, practices standing with assistance from his mother, Andrea Dole. Sofia Aldinio/ Staff Photographer

Burns said the problem is that Medicaid – a federal program administered by the states and funded with a blend of federal and state dollars – gives states leeway to design their own programs for paying parents and other family members to be caregivers. Some states have done extremely well at making the program accessible – Colorado is often cited as an example. Other states do not allow it, or make the programs difficult to access because of hard-to-navigate bureaucracy or qualifying criteria that are difficult to meet.

“Everybody agrees that the current system can be extremely difficult for some parents to access,” Burns said. “Everybody recognizes this and yet there is not currently a concrete proposal people can rally around.”

Burns said part of the problem is that Medicaid may be reluctant to create a standardized program that is less generous than what some states are already doing.

Nevertheless, the Biden administration is encouraging states to allow parents to be paid as caregivers.

Daniel Tsai, deputy administrator at the Centers for Medicare and Medicaid Services, spoke with parents from Maine and across the country last month in a virtual meeting that was open to the media. During the pandemic, he said, the federal government made it easier for state-run Medicaid programs to pay parents to be caregivers for their special needs children, and some states took advantage of the eased rules. The expansion of services was so successful, Tsai said, that CMS is “committed” to making sure states can continue making the benefit available, even after the COVID-19 public health emergency ended on May 11.

“We are encouraging states to do this, and we are doing everything possible to make sure there are no federal barriers,” Tsai said.

Andrea Dole, 42, transfers her son James, 7, who has microcephaly and cerebral palsy into her car with the assistance of Kathy Anderson, the aide at James’ school, and Richard O’Brien, James’ nurse. Sofia Aldinio/Staff Photographer

Jackie Farwell, spokeswoman for the Maine Department of Health and Human Services, said the agency is neutral on Fay’s bill, which passed unanimously out of the Health and Human Services Committee. While not officially endorsing or opposing it, DHHS is offering technical support to make sure the bill, should it pass, meshes with the MaineCare program.

“The department recognizes the challenges that parents of medically fragile young children face in securing care that meets their complex needs,” Farwell said in a statement. Farwell did not explain why the administration doesn’t support the bill.

Dole said one of the reasons she was able to hire caregivers to help the family is because she previously worked as a social worker and in behavioral health case management, and knows more than most how to interact with MaineCare programs.

But Dole said allowing parents to be paid only solves one part of the problem. It can help keep families afloat financially, but the direct care workforce shortage still needs to be addressed so families who need home health nurses can find them and get breaks from caregiving, Dole said. Even though the Mills administration has improved reimbursement rates to increase pay for direct care workers, inflation and the overall workforce shortage has still resulted in an ever-shrinking workforce, leaders of nonprofit agencies have said.

Dole said James’ needs are extremely complex – with microcephaly his brain does not develop normally – and he is non-verbal and has difficulty learning. After years of therapy, he can now walk a few steps with assistance and may one day be able to feed himself. He enjoys music and playing on swings with his 5-year-old brother, Rafe.

James learns, but at a much slower pace than children without disabilities. Still, he has made tremendous progress, in large part because the family has had some skilled help in addition to caring and attentive parents, Dole said.

“If I were working full-time, there is no way I could be juggling all of this,” Dole said. She said despite living “very frugally,” they have not been able to save for retirement. Her husband, Patrick Dole, works as a boat builder and a Maine guide.

“If we could be paid for this skilled care we are providing James, it would give us better financial security,” Dole said.

For Heather Johnson, being paid for her labor and getting outside help in the home would bring some level of normalcy into their household – allowing them to go out to a restaurant, replace an aging car, save for retirement, go on vacations.

“I just want to be able to live like a normal person sometimes,” Johnson said. “I want to be able to dream about our future, but all of my time is spent being Adaline’s caregiver.”