NPR News Investigation: Families Fight To Care For Disabled Kids At Home NPR INVESTIGATION: In states like Illinois, parents can provide at-home care for children with severe illnesses and Medicaid foots the bill. But the funding disappears the minute they turn 21, forcing families to make a painful choice: Find the money to pay for sometimes exorbitant health care costs or send their children to a nursing home.
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Families Fight To Care For Disabled Kids At Home

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Families Fight To Care For Disabled Kids At Home

Families Fight To Care For Disabled Kids At Home

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From NPR News, this is ALL THINGS CONSIDERED. I'm Melissa Block.


And I'm Robert Siegel.

There's been a quiet revolution in the way the elderly and young people with disabilities get long-term health care. That's the care we usually think people can get only in a nursing home. In fact, a new legal right has emerged to get that care in your own home. But there's often little logic to who gets care at home versus a nursing home. It can be determined by something as quirky as your birthday.

Joseph Shapiro of NPR's investigative unit has our report.

JOSEPH SHAPIRO: This story starts 29 years ago with an angry President Ronald Reagan.

President RONALD REAGAN: We just recently received word of a little girl who has spent most of her life in a hospital.

SHAPIRO: The little girl in the hospital was three-year-old Katie Beckett. Because of a brain infection she needed to be hooked to a ventilator at night to breathe. Her parents wanted her home. Her doctor said she'd be better off at home and it'd be cheaper, too - just one-sixth the cost.

But Medicaid, the state and federal health insurance program, would pay for the breathing machine only if the girl lived in that expensive hospital.

President REAGAN: Now, by what sense do we have a regulation in government that says we'll pay $6,000 a month to keep someone in a hospital that we believe would be better off at home?

SHAPIRO: President Reagan changed the Medicaid rules and Katie Beckett left that Iowa hospital and went home. The assumption was this was a kindness to the family of a child who wasn't expected to live for very long.

But technology improved. These disabled children did live longer and Medicaid's costs soared. In the three decades since, more than half a million children with severe medical conditions have been allowed to leave hospitals and get their care at home - children like Olivia Welter.

(Soundbite of a ventilator and suctioning)

SHAPIRO: Olivia Welter is 20 years old now. She's been severely disabled since birth. She breathes with the help of the portable ventilator on the back of her wheelchair. She can't speak. She can't move. Her eyes are wide open. She can't even close her eyelids.

(Soundbite of a ventilator and suctioning)

SHAPIRO: You've probably never seen a person hooked up to so many plastic tubes: there's the ventilator tube that keeps Olivia breathing; the feeding tube that's also the tube for her dozen or so medicines; the tubes to the vibrating vest that loosens the mucus in her lungs; another tube to help her cough; the tube that her nurses is using now to suction the mucus out of her mouth.

Helen Houchins is the day nurse.

Ms. HELEN HOUCHINS (Registered Nurse): This is intensive care, 24 hours a day.

SHAPIRO: Now, if you think of being hooked up to machines as something that keeps a dying person alive, that's not what's going on here. Olivia Welter is not dying. These tubes and machines keep her healthy, even though John Welter says that when his daughter was a little girl, doctors told him to be ready for her to die.

Mr. JOHN WELTER: Now that she is 20, she may live to be 50. In any previous generation, she would have passed away as a child, frankly. And so we're looking at a whole new frontier of care.

SHAPIRO: On that frontier, better medical technology has kept Olivia alive and healthy. But also the attentive, loving and constant care that she's received at home; from the nurses who work 16 hours a day and are doing some treatment for the girl every several minutes, and from her parents who take over for the other eight hours.

Ms. TAMARA WELTER: You do what you have to do for your child.

SHAPIRO: Tamara Welter says her daughter's good health and good nature make the family's sacrifice worthwhile.

Ms. WELTER: I've had doctors, a couple of doctors, who have questioned doing something for Olivia, kind of on the basis of: Is she worth it? I've looked them in the eye and said, don't you dare say that to me. Do you have children? What would you do for your child?

I think society can look at a person like Olivia and say: What can she contribute? But - I'm going to cry again.

SHAPIRO: Tamara says Olivia responds when her parents or nurses walk into a room, with a glance and flailing her arms. Her father says when no one else is in the house he and Olivia turn up the country music and play it loud.

Mr. WELTER: That's our guilty pleasure.

(Soundbite of laughter)

Mr. WELTER: And the more twangy the sound and the sillier the words, the more she loves it. And one day, we were listening to country music and some guy was leaving his girlfriend in his pick-up. And I repeated the lyric and said: Kiss my bumper goodbye, baby.

(Soundbite of laughter)

Mr. WELTER: And she just erupted in giggles. And she thought that was the funniest thing.

SHAPIRO: Those moments have become fewer in recent years, as Olivia's seizures get worse. Still, every day, Olivia's parents tie her hair in a colorful bow -like the blue and orange one today that matches her clothes. They take her to church and to restaurants. Until last year, her nurses took her to school, although there was no way to tell what she was learning.

Olivia Welter is about as disabled as anyone you'll ever meet. Yet she's been hospitalized just twice in the last seven years. She's had just one bedsore her entire life and that was a dozen years ago.

Mr. WELTER: This is a letter sent to Olivia Welter from the Illinois Department of Health Care and Family Services.

SHAPIRO: Now the state wants to cut way back on Olivia's care.

Mr. WELTER: Reasons: On November 8th, 2010 will be the last day of eligibility as Olivia turns 21 years of age, pursuant to 89 Illinois Administrative Code 120.530G.

SHAPIRO: Tonight, Olivia Welter turns 21 and at the stroke of midnight, by the state's rules, she will no longer be eligible for that program for disabled children that's kept her healthy and alive.

Ms. WELTER: There's not going to be any magic transformation between November 8 and November 9. She will be the same Olivia, with the same challenges and the same care needs.

SHAPIRO: Instead, the state has offered to pay for her to move into a nursing home, so the Welters are suing Illinois. And they've got some support from the U.S. Department of Justice. It told Illinois that it's in violation of the Federal Americans With Disabilities Act, when it cuts off children like Olivia Welter.

The Welters worried that tonight, Olivia's nurses would be forced to walk out the door. But just over a week ago, the state of Illinois agreed to keep paying for Olivia's care, at least for a little while longer. It might be a few months or several months, while a judge considers the lawsuit.

NPR asked to speak to an official from the Illinois Department of Healthcare and Family Services. The agency declined, saying no one could comment because of the Welters' pending lawsuit.

States like Illinois are caught between wanting to do more but not having the money.

Alan Weil runs the National Academy for State Health Policy, a Washington-based think tank.

Mr. ALAN WEIL (Executive Director, National Academy for State Health Policy): By the blessings of the advances of medical technology, we keep people alive who would have died in the past. That technology is very expensive, and someone has to pay for it.

SHAPIRO: Illinois faces a $15 billion deficit.

Mr. WEIL: States are in the worst fiscal situation ever.

SHAPIRO: In Illinois, about 600 children with severe disabilities get care through the program that supports Olivia Welter. Every year, about 20 of them age out. Some go to nursing homes; other families struggle to keep their children at home but often get overwhelmed by the care.

Last year, a quadriplegic man in Peoria died at home just a few months after he turned 21, with bedsores so severe that his flesh was open down to the bone.

It's expensive to care for Olivia at home. Those nurses cost about $220,000 a year. The Welters are immensely grateful. But they figure they've saved the state millions of dollars by keeping Olivia out of the hospital.

Now that Olivia is 21, the state will pay half the money Olivia got before. It's enough to pay for personal care aides, not the nurses anymore. But there's catch: By Illinois law, aides can't give Olivia her medicines or replace her breathing tube if, in an emergency, it pops out.

The state will pay the full cost of a nursing home. But John Welter doubts his daughter would get the close attention in one she needs to stay alive.

Mr. WELTER: Because we would be afraid that in any 10 minutes, her life could be put in danger. Or less - in any three minutes. It would be agonizing, day to day to day.

SHAPIRO: So if Olivia loses her funding, the Welters say they'll become her round-the-clock caregivers. Tamara will quit her part-time job as a cashier at the Cracker Barrel. She took it to pay for her son's college. John might need to quit teaching history at the nearby college, but that job gives the family health insurance that pays for other parts of Olivia's care that the state doesn't pick up.

Now, maybe you're wondering what happened to that little girl on the ventilator in Iowa who started all this when Ronald Reagan helped her move home.

(Soundbite of song, "Happy Birthday")

SHAPIRO: In March, Katie Beckett turned 32. She got serenaded and a standing ovation at a convention of child health workers.

(Soundbite of applause)

SHAPIRO: She's famous to these children's advocates. But Katie says she feels most comfortable when she's anonymous, like when she's by herself reading in the bookstore.

Ms. KATIE BECKETT (Child Care Advocate): In Cedar Rapids it's quite different. You know, I'm the girl that they see drinking a latte in Barnes and Noble, and not the girl from the newspaper or from the television station.

SHAPIRO: Katie still relies upon nurses who, for an hour every night, give her treatments. She still needs the ventilator to breathe, up to 15 hours a day. And she travels the country with her mother Julie(ph) to continue the work they started in 1981, to win laws and programs to help people with disabilities, young and old, get the care they need to live at home.

Joseph Shapiro, NPR News.

SIEGEL: At our website, you can find a searchable database of nearly 16,000 nursing homes from across the country, and it shows the independence level of the residents. That's an indication of their potential for home-based care. We also have an interactive timeline and more, all at

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