Mom Re-Enlists To Get Treatment For Disabled Son

Emily Spahr and her baby Owynn.  Owynn suffers developmental delays. i i

hide captionEmily Spahr's son, Owynn, was born with a brain injury that caused developmental delays. Because of state budget cutbacks, Owynn is not getting the early-intervention treatment he needs. So Spahr is re-enlisting in the Army.

Joseph Shapiro/NPR
Emily Spahr and her baby Owynn.  Owynn suffers developmental delays.

Emily Spahr's son, Owynn, was born with a brain injury that caused developmental delays. Because of state budget cutbacks, Owynn is not getting the early-intervention treatment he needs. So Spahr is re-enlisting in the Army.

Joseph Shapiro/NPR
Owynn gets two physical therapy sessions a week with physical therapist Edwin Suarez. i i

hide captionOwynn is getting two physical therapy sessions a week, paid for by Medicaid. His parents say that's not enough. Physical therapist Edwin Suarez says the more therapy Owynn gets, the less likely he is to have disabilities later on.

Joseph Shapiro/NPR
Owynn gets two physical therapy sessions a week with physical therapist Edwin Suarez.

Owynn is getting two physical therapy sessions a week, paid for by Medicaid. His parents say that's not enough. Physical therapist Edwin Suarez says the more therapy Owynn gets, the less likely he is to have disabilities later on.

Joseph Shapiro/NPR
Owynn and his father Will Spahr. i i

hide captionOwynn and his father, Will Spahr. Owynn is 4 months old, but developmentally, he's at the level of a 2-month-old.

Joseph Shapiro/NPR
Owynn and his father Will Spahr.

Owynn and his father, Will Spahr. Owynn is 4 months old, but developmentally, he's at the level of a 2-month-old.

Joseph Shapiro/NPR

In states hard-hit by economic recession, families with young disabled children are among the first to feel the effects. State budget cuts are taking away promised therapy for those children, even though getting it can make a difference in their ability to learn for the rest of their lives.

In Nevada, the budget crisis is so bad that it has created long waiting lists for children who need early intervention. That's forcing one family to make a pretty dramatic choice.

Owynn's Story

When Emily Spahr was pregnant, she became infected with cytomegalovirus, a common virus that is harmless to most people but can be dangerous for pregnant women.

"We were told when he was born that he might not survive," Spahr says. "The doctor looked at us and said, 'Your baby's very sick.' And we're like, 'Well, when can we take him home?' And they said, 'We don't know right now. He might never come home.' Which was pretty intense for all of us."

Owynn did survive, but with a brain injury. He's 4 months old now, but he looks more like a newborn, with protruding ears and crinkled eyes. He can't do things that should come easily — like raise his head and keep it up, or keep his balance. He's going to need a lot of therapy.

Re-Enlisting For Health Care

As Nevada residents, Spahr and her husband, Will, face long waits to get the state-funded, early-intervention therapy that's so critical for children like Owynn. So to make sure her son gets the care he needs, Emily Spahr is re-enlisting in the Army.

"This is the hardest decision I've ever — that I and we have ever had to make," Spahr says.

As she explains, her 2-year-old daughter, Devon, cries, "Don't go, Mom."

It's not a sure thing that the Army will even give Owynn all the care his mother thinks he needs. But Spahr says the military does better than the state at providing care to disabled children.

Spahr was based in Germany a couple years ago. The decision to re-enlist was something she thought about for a long time, and although she knows there's a chance she will get sent to Iraq or Afghanistan, it's a chance she's willing to take.

"It's worth it. I just didn't want to do it when the children were so young," she says.

Will Spahr agrees: "If we don't do this, [Owynn] won't be able to lead the quality of life that he should."

Early Intervention

Because Nevada takes federal funding for early intervention services, it is required to provide free therapy to kids with developmental disabilities up to age 3. But, as a fast-growing state, it has had to keep up with more and more children needing the therapy, while, since 2004, the amount of money Washington contributes to the program has stayed flat. Nevada's contribution has more than doubled. Still, last year, because of statewide budget shortages, the Nevada Early Intervention Services program stopped providing therapy for new patients.

At the end of December, Owynn was one of 566 children in Nevada on the waiting list.

While Emily goes through the process of re-enlisting, the Spahrs started some physical therapy for Owynn through the state Medicaid program, the health insurance program for the poor and uninsured. But it's only a small part of the therapy he needs, and it may not last for long.

Physical therapist Edwin Suarez is seeing Owynn twice a week. Suarez is trying to help Owynn do things that would be simple for most 4-month-olds, like keep his head lifted or move it to keep his balance. Suarez says the brain infection Owynn had at birth has resulted in severe developmental delays.

Owynn is likely to grow up with cognitive disabilities, he may need a wheelchair to get around, and he's at risk of seizures. So getting therapy like this — getting it early and getting enough of it — could determine how well Owynn walks, talks and learns for the rest of his life. "With infants and children, the sooner we intervene, the less likelihood they'll have disabilities later on in their life," Suarez says.

But last fall, Nevada's Medicaid program made deep cuts in what it paid private therapists who care for children. And that's forced some therapists to shut down their clinics or turn away families.

Suarez says he has kept his business going, but with difficulty, by taking more adult patients and turning away more kids.

Nevada Budget Crisis

After one of Owynn's therapy sessions, Emily and Will Spahr go back to their apartment. It's cramped and narrow. Family photos are taped to the wall.

Will puts the baby in his lap. He lets Owynn grab onto his thumbs. Then Will softly stretches the baby's fingers. It's something he and Emily learned in physical therapy to help Owynn get movement in his fingers.

Then they turn on the small TV. In his State of the State address, Nevada Gov. Jim Gibbons is announcing budget cuts amounting to more than $2 billion over two years. Cuts are coming from education, health care and social services.

But then, to the Spahrs' surprise, instead of cutting the early-intervention program that would help Owynn, Gibbons says he wants to add more money.

"We have hundreds of children waiting to receive needed services. So I have included in my budget an additional $9 million, over the biennium, to absorb this waiting list," Gibbons said.

It gives Emily a moment to reconsider her decision to re-enlist in the Army.

But she says that even if the state Legislature goes along, the money wouldn't show up until late summer at the earliest.

It helps that a public interest legal group, the Nevada Disability Advocacy and Law Center, has filed a legal action that charges the state with illegally denying services to kids like Owynn. And that the economic stimulus plan, from Congress and the White House, proposes more federal money for the program.

Still, Spahr says she can't be sure when, or even if, her son will get what he needs from the state.

"There are so many kids already on that waiting list," Spahr says, "that God only knows if it's going to take two years for Owynn to get what he needs. We're on the waiting list, but we're on the bottom, the very bottom."

So Spahr will go ahead with her plans to rejoin the Army. She knows she may be sent overseas, away from her family and Owynn.

"Owynn needs it. He might not even remember me, for all I know, when I get back, if I go anywhere. I know that every military family has to make that choice, but no parent should have to do it, just to keep their children, pretty much, alive," Spahr says.

The last time Spahr was in the Army, she was an air-conditioning mechanic. This time, she's asked to get trained as a nurse. She was inspired by the nurses on the intensive care unit who were so kind to Owynn. And she wants training so, no matter what, she can give Owynn the care he needs.

Produced by Jane Greenhalgh

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