DEBORAH AMOS, host:
This is MORNING EDITION from NPR News. I'm Deborah Amos.
RENEE MONTAGNE, host:
And I'm Renee Montagne. Today in Your Health, we're concluding our five week tour through the universal health systems of Europe with a visit to Switzerland. We sent NPR's Julie Rovner there to take a look at the health care system and focus especially on how care is provided to people with disabilities. She's with us now.
Good morning, Julie.
JULIE ROVNER: Good morning, Renee.
MONTAGNE: Let's begin with the basics. How is the health system in Switzerland different from the one that we've got here in the U.S.?
ROVNER: Well, the fundamental difference, of course, is that everyone in Switzerland has health insurance. It's required by law. Now, it's mostly run through private insurance companies, unlike most of the rest of Europe where it's government-run, but it's still universal coverage.
MONTAGNE: And about the care that people are offered who have disabilities, I gather you were struck by how that works there.
ROVNER: Yes. The disability system is run by the Swiss government. It's 50 years old, and it's funded by a payroll tax. Now, here in the U.S. we also have something funded by a payroll tax called disability insurance. It's only for workers. It only provides cash benefits. The Swiss system's much more comprehensive and it covers the entire population.
MONTAGNE: And those were the main differences?
ROVNER: No. I really think the main difference is one of attitude. The Swiss disability system is really about making sure that everybody who needs care gets it. It's more cradle-to-grave, one-stop shopping. Here in the U.S., yes, there are services available, but families have to go out and hunt for them and often fight to get them.
MONTAGNE: You visited two families with disabled children - one family here in the United States, the other family in Switzerland. And if you will, take us along on those visits.
ROVNER: Well, the first family I met was Ellen Wallace and Nick Bates and their daughter, Tara. I went to see them at their cabin in Valais region in Switzerland in the Alps.
(Soundbite of bell ringing)
ROVNER: It's starting to rain, but even that doesn't detract from the pristine beauty of this place. Next door, the neighbor's cows are waiting to be milked, while off in the distance there are snowcapped mountains.
(Soundbite of laughter)
Ms. ELLEN WALLACE (Daughter has autism): Do you like the rain? Is that what's going on? They're great big splats, aren't they.
(Soundbite of grunting)
Ms. WALLACE: Tara doesn't talk at all, but she does communicate a bit with sounds. The sound she was just making there is a sound she makes when basically she's contented.
ROVNER: Tara is autistic. She has huge blue eyes and dark blond hair. She's 16 now.
Ms. WALLACE: (Unintelligible) give me a washcloth.
ROVNER: And as she's gotten bigger and, well, more adolescent, she's not always easy to manage.
Ms. WALLACE: Tara, come on. You need a towel. You leap out of the bath. You run away before anyone can dry you or put clothes on you.
Ms. WALLACE: If Ellen Wallace doesn't sound Swiss, that's because she's originally from Iowa. Husband Nick is from England. They settled in a little town near Lausanne in Switzerland, where he teaches high school and she runs a Web site.
Ellen soon gave birth to a healthy son, Liam, and then four years later to Tara. She says she knew by the time Tara was three months old something was wrong.
Ms. WALLACE: I had very clear memories of how lovely it was when you're breastfeeding a little baby and they are looking up at you. There's that eye contact that is so critical. And Tara at this point never looked me in the eye. It just didn't feel quite right.
ROVNER: When Tara was 3-and-a-half, she was officially diagnosed as autistic and qualified for Switzerland's federal disability insurance.
Ms. WALLACE: It covers the cost of her schooling, because she goes to a special education school. She's got a special giant tricycle that was made for her. And this gets surprisingly expensive. You know, she still wears Pampers.
ROVNER: Suddenly Tara appears at Ellen's side.
Ms. WALLACE: Whatcha got? Uh, uh, uh. Oh, Tara. Don't get into the garbage, please. Tara likes to chew on paper and cardboard is especially satisfying because it doesn't disintegrate.
ROVNER: Tara leaves a nearly perpetual mess, so it helps that the family also gets money for things like a cleaning lady or other household chores. Ellen says she particularly likes the way Swiss social workers trust the families they work with.
Ms. WALLACE. Their job appears to be to try and be helpful and to get you as much assistance as they possibly can. They're on your side.
ROVNER: But as Tara neared 16, Ellen got anxious. She wondered what would happen to her after she and Nick died. So she went to see her social worker.
Ms. WALLACE: She said basically you don't ever have to worry. Every person who is a Swiss citizen has the right to be able to live decently. For me that was just such a huge wave of relief. To have somebody tell you, you don't ever have to worry about how your child is going to be cared for.
MONTAGNE: That would be, Julie, a nice feeling. Although I gather the Swiss are having some trouble financing these very generous benefits.
ROVNER: That's true. The Swiss spend about $40,000 a year for every person who gets disability insurance. That's actually not a whole lot, considering all the benefits they provide. There are some states here in the U.S. that spend more than that on services for the disabled even without the medical and educational services that are part of the Swiss system.
But still, the Swiss disability system's been running a deficit, but there's no indication that people like Tara, who really need benefits, are going to lose them.
MONTAGNE: To get a feel for the differences in the two countries, Ellen introduced you to a friend of hers here in the U.S. in a similar situation with her children.
ROVNER: Yes. They met on the Internet through a chat group for parents of autistic children. Nancy Legendre, her husband and their two autistic daughters live in Gloucester, Massachusetts.
MONTAGNE: Which, Julie, presumably offers some services.
ROVNER: Oh, yes, of course. The U.S. does offer services, just they're not as generous and they're nowhere near as easy to access. And when the children become adults, there's really almost nothing that's guaranteed. So this family's trying something that's really out of the box. They bought an old convent that they hope to convert into a group home for their daughters and maybe some other disabled adults.
MONTAGNE: A convent?
ROVNER: That's right. It still needs a lot of work, but Nancy gave me a tour.
(Soundbite of footsteps)
Ms. NANCY LEGENDRE: This is one of the bathrooms that the nuns had renovated. They were nun-gray...
(Soundbite of laughter)
Ms. LEGENDRE: ...no mirrors.
ROVNER: For now, Nancy, her husband, Walter Herlihy, and their girls, 17-year-old Lily and 19-year-old Julia, live here by themselves.
(Soundbite of daughters)
Ms. LEGENDRE: It's hot and humid, so it's a relief for the girls to be able to splash in the family's backyard pool under the watchful eye of two college student aides. Julia and Lily can't be left alone at all. They can't dress themselves, go to the bathroom alone, or even climb stairs without help. That makes them eligible for programs the state of Massachusetts offers to all disabled children, even those in relatively wealthy families like this one.
Right now, aides come for several hours each day, but Nancy says even getting that wasn't easy.
Ms. LEGENDRE: So even knowing we were eligible, we then had to wait over two years to get that level of service. It was lots and lots and lots of tears.
ROVNER: And Massachusetts programs are fairly generous - according to advocates for the disabled, in the top half nationwide. What really gives Nancy chills, though, is what will happen when her girls reach adulthood. After age 22 the state doesn't guarantee any services at all. And Nancy still recoils at the idea of putting the girls in an institution or even a group home. So they're using their own financial resources to try to design the girls' future.
Ms. LEGENDRE: So the first thought we had was we would build our own group home, but the difference would be we'd have the staffing that would eventually live onsite to oversee the program. But we would like to live there too. I mean that would be the ideal.
ROVNER: For now, Nancy is busy renovating the convent and talking with state officials about actually turning it into a group home. And yes, she's envying her friend Ellen back in Switzerland.
Ms. WALLACE: This is a girl who's just had three croissants and some juice in the car.
ROVNER: It's Monday morning in Switzerland and Ellen is dropping Tara off at school. Tara lives here during the week.
Ms. WALLACE: Usually when I drop Tara off on Monday mornings, I have the right - this is kind of Tara who dictates these rules - I have the right to take her up, drop her off, give her a hug and a kiss and say goodbye, I love you. And then she turns me around and she pushes me towards the door.
ROVNER: It's easy to see why Tara likes it here. The grounds are lovely, the classrooms bright and airy. In the center of the campus are dormitories. Ellen says this is where Tara will live when she and Nick are gone.
Do you consider yourself overall lucky to be here?
Ms. WALLACE: No, I'd have to say I consider myself extremely lucky. It's way past lucky.
ROVNER: Julie Rovner, NPR News.
MONTAGNE: Europe spends far less on health care than the United States while managing to cover nearly everyone. You can listen to our stories from five European countries at npr.org.