Spotsylvania parents get lost in Medicaid maze until an ‘angel’ saves them

Aug. 28--As the medical bills for their daughter mounted, Andrew Smith and Kim Ragaini-Smith wondered how they could pay their mortgage and still make sure she got the proper care.

Her needs were so acute, they thought there must be some government program that could help her.

There was, but no one ever mentioned it to the Smiths. And it's not as if the Spotsylvania County couple hadn't asked.

They regularly dealt with social workers, doctors and hospital staff as their daughter, Adelynn, now 8, faced open-heart surgeries and pneumonia from congenital heart defects.

"There really isn't anybody out there to help you," the mother said. "There's no one to tell you how to figure it out."

As their financial condition worsened, the Smiths consulted a lawyer and debt counselor. They also applied for Medicaid, twice, but were denied because they made too much money.

All the while, they dealt with uncertainties about their daughter's future. The Smiths were halfway through the pregnancy when Adelynn's problems appeared, and one doctor advised them to terminate.

Another said she might live for two weeks.

"We've really kept her in a bubble her whole life, just trying to keep her alive," her mother said.

But like their daughter, who has trouble catching her breath, the Smiths were drowning in debt. They were over their head in bills as they tried to make sense of the complex world of Medicaid applications.

Their friend, Paula Joseph, is a school librarian who likes to do research. She tried to help with paperwork and hit the same brick walls.

"Nobody has any answers, and nobody is able to navigate the system," Joseph said. "I don't know how anybody gets through it. The whole thing makes me crazy."

NOT AN UNUSUAL CASE

Medicaid is funded by federal and state governments and typically provides health care for the poor. It also offers waivers that provide the same health coverage for people of all ages with qualifying disabilities.

During the first six years of Adelynn's life, it was never mentioned that the Smiths should apply for a specific waiver.

Approval for waivers is based on a person's disability while general Medicaid is based on income.

The Smiths got so behind on bills, because of the co-pays, prescriptions and therapies Adelynn needed, that they lost their home and ruined their credit.

"We're fairly smart, educated people, but we had no idea" there were Medicaid waivers, said the mother, a first-grade teacher in Spotsylvania County. "I can't imagine how many people out there don't know about it."

Plenty, according to the Endependence Center, a private nonprofit organization based in Norfolk.

The nonprofit trains mentors on ways to help people like the Smiths get the care and financial help they need. Agencies such as the disAbility Resource Center of Fredericksburg have Medicaid mentors.

Still, information about the waivers isn't passed along, either by social workers or hospital discharge staff who should be the first point of contact.

"The very people who are responsible for giving people an entree into the program are often the people who know the least about it or don't have the time to do the screening," said Maureen Hollowell, director of advocacy and services at the Norfolk center. "They're overwhelmed, and they're overworked."

Hospitals and social-service departments contacted by The Free Lance-Star couldn't speak to the specific issue of why families, like the Smiths, weren't told about their options as soon as their children were born with long-term disabilities. Instead, they spoke to their processes, which include having advocates on staff who help all uninsured patients or those who may be eligible for Medicaid.

What the Smiths experienced isn't unusual at all, Hollowell said.

"It happens all the time."

'OUR ANGEL'

Life changed for the Smiths when they were looking for someone to stay with Adelynn after school.

A rising third-grader at Courthouse Road Elementary School, Adelynn goes to class only half a day because of her health.

She was born with four different heart defects that limit the blood flow between her heart and lungs.

Adelynn gets short of breath when she's just sitting still, playing Minecraft. Walking across the room can make her lips turn blue because there's not enough oxygen in her blood.

As the Smiths searched for an aide, Joseph happened to mention Adelynn's case to her friend, a home health-care nurse. That's Mary Lou Nissim-Sabat, and her first question was: "Why is she not on Medicaid?"

Nissim-Sabat asked to meet the Smiths. She listened to the struggles they faced, how they lost their townhouse in Orange County and lived in various rentals in Spotsylvania.

She heard about the paperwork that almost overwhelmed the family as they applied for Medicaid or simply tried to get back the money due them from various supplemental insurance policies the Smiths have. Andrew Smith often had to make "18 million phone calls," his wife said, to insist that doctors' offices and hospitals put the correct code on procedures so his family could get benefits.

"What a massive mess our health-care system has become," the nurse said.

She got on the Smiths' case and helped them apply for the Elderly or Disabled with Consumer Direction waiver. It's primarily designed to keep older people at home, with health-care aides, because that's cheaper than putting them in facilities.

But it's also for people of all ages who need long-term care, especially help with basic functions such as bathing and eating.

Adelynn has had a feeding tube since she was 4, and she gets liquid nutrition through it while she sleeps. Her parents also use a syringe to give her medicine through the tube.

Within three months of applying for the waiver, Adelynn was approved. All her doctor visits, hospitalizations and medicines--she takes about 10 daily--are covered by Medicaid. It also pays for 42 hours a week of "personal care attendants," usually college-age students who help Adelynn with her homework or play Calico Critters with her. They're figurines of cats and kangaroos, koalas and pandas that Adelynn moves through her dollhouse.

"Mary Lou has been our angel," Kim Ragaini-Smith said. "Medicaid has changed our lives immensely, and I never would have known about this without her."

SHE'S 'JUST A JOY'

The Smiths still live paycheck to paycheck, the father said, but their credit has improved enough for them to buy a house. This summer, with financial help from relatives, they moved into a two-story home in Lee's Hill.

They would have liked a ranch-style house so Adelynn wouldn't have to climb steps. But they couldn't find any available outside of communities for age 55 and over.

The Smiths would like to get a stair lift for Adelynn to ride up to her bedroom, painted in her favorite color of Beverly lilac. But once more, they're facing an obstacle with Medicaid.

It covers equipment for only those who are intellectually or developmentally disabled. Adelynn is neither. But any kind of physical exertion is so hard on her, one night recently she turned gray as she tried to go up the steps.

"She looked like death," her mother said.

So, even though Adelynn weighs 72 pounds, her mother carries her upstairs, piggyback style. Her father totes her on his hip, but he's already having back problems from carrying her.

The Smiths, along with Nissim-Sabat, are searching for ways to get Medicaid to pay for the lift. Joseph has offered to start a Go Fund Me account, and a local businessman says he'll give them the equipment at his cost.

Meanwhile, the Smiths try to keep life as normal as possible for their "sassy" third-grader who is smart and funny and "just a joy," said family friend Joseph.

"We're just working on keeping her alive as long as we possibly can," her mother said. "We didn't think she'd see [age] 8, and we're thankful she did."

Cathy Dyson: 540/374-5425

[email protected]

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