NPR

Disabled Kids Living Isolated Lives In Institutions

Thousands of children with physical and mental disabilities live in institutions, isolated from their families and decades younger than other patients. The institutions are often better equipped to handle their medical needs, but can fall short when it comes to other aspects of the kids' lives.

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Transcript

NEAL CONAN, HOST:

This is TALK OF THE NATION. I'm Neal Conan in Washington. In 2008, 18-year-old Donald Bailey suffered a spinal injury that left most of his body paralyzed and confined him to a wheelchair. He lived at home for some time with his family, but he was moved to a nursing facility in 2010 to receive proper support and services, a 20-year-old isolated among patients, some of whom are half-a-century older.

Across the country, thousands of physically and mentally disabled children and young adults live in institutions. In some cases, that's the best of the bad choices. In too many cases, the institutions aren't equipped to suit their needs. So what happens? Are there alternatives? And what can be done to help more children get the care they need at home?

If this is your story, give us a call, 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION. Later in the program, former presidential speechwriters Paul Glastris and Peter Robinson on the art of the stump speech.

But first, NPR investigative correspondent Joseph Shapiro joins us here in Studio 3A. Nice as always to have you with us.

JOSEPH SHAPIRO, BYLINE: Thank you, Neal.

CONAN: And this is - how widespread is this problem?

SHAPIRO: With children it's a surprise, right, that people under the 21 in nursing homes. There are about 6,000 children under the age of 21 living in American nursing homes. So it's surprising, and actually the group after that, people who are 31 to 64, are actually the fastest-growing group in nursing homes now, and it's actually the same problem, why you have children in nursing homes and why you have those working-age adults, it's because when people have disabilities, there aren't a lot of alternatives for them to get the care they need to live at home.

Sometimes it's just something as simple as getting an aide to come in and get you out of bed.

CONAN: And some state agencies or Medicare or Medicaid sometimes will provide that service. Oftentimes they will not, so the only alternative is a nursing home.

SHAPIRO: Correct, and so this is generally Medicaid so that in-home aide, or maybe a nurse coming in, that can make the difference between whether a child lives at home or ends up being forced into a nursing home or a state institution. Without an aide, it's up to the family to do all those things we call the activities of daily living: the cleaning, the lifting, the dressing.

If a mother or father has to do that 24 hours a day, it's exhausting. I've - or it could be that the child grows up as a teenager and is simply too heavy for a mother to lift by herself. I met teens and young adults in nursing homes who were there only because the mother could no longer get them out of bed.

But you bring in an aide just several hours a day, and that parent can look after her other children, look after that disabled child, she can go off to work, pay taxes. A little bit of help can make a big difference.

CONAN: Well tell us, for example, you did a story about a patient by the name of Matthew Harp(ph).

SHAPIRO: Right, and we heard him before when you were promo-ing this. So Matthew Harp was a young man who - that was a case where his mother couldn't do the work, couldn't life him. At the time when he was 21, she thought she had no choice, and he ended up in a nursing home. He was in a geriatric nursing home. He was the only young person in this place. He hated it.

He got out - well at that time, Georgia didn't provide the kind of in-home care he needed to get out. His mother was on his own. But - you know, and you heard him say he just hated being in that nursing home. He just - he stopped his education. Just everything, his whole life stopped for him.

But then Georgia got some money under a new federal program called Money Follows the Person, that provides basically what it takes to get somebody out of a nursing home. So in Matthew's case, it got him out of the nursing home, it provided nine hours of aides a day to come into his mother's house and care for him.

It also provided some other things that they needed to make him be able to live at home. They paid to put a driveway in front of his house so that he could get into the van. Just simple things like that made all the difference and let him be independent.

CONAN: And all that sounds really expensive until you compare it to the cost of a nursing home.

SHAPIRO: That's exactly right.

CONAN: And there are all kinds of bureaucracies that can get people matched up, as well. You reported on one case where somebody was from Georgia. The only nearby facility was in Alabama. They wanted to move back to Georgia but then couldn't prove they were a resident of Georgia because they'd lived so long in Alabama.

SHAPIRO: Right, well that's - actually that's the sort of sad outcome of one of the families that I followed around in Georgia. At the time when her son was young, there were no nursing homes in Georgia that would take him. The closest one that had a pediatric nursing home was in Alabama. She drives 200 miles - it's one way - 400 miles every other weekend just to see her son.

She wants to bring him home to Georgia. Georgia Medicaid says well, he's over 21 now, he's a resident of Alabama, we can't take him.

CONAN: And these sorts of conundra, there are very aspects of - well, as you say there's this program where the money follows the patient. Is that being applied, or is that getting lots of people out of these situations?

SHAPIRO: Money Follows the Person, it's a new program that started in the Bush administration. It was something that was really started by people with disabilities who wanted more options to get out of nursing homes. And most states now have money from that program.

Florida recently turned down $38 million that would have provided that program, that Money Follows the Person Medicaid funding. And Florida's the state that's been in the news most recently because the Department of Justice just last month issued a findings letter that said that parents in Florida often have no choice but to put a child in a nursing home and that that's a violation of the Americans With Disabilities Act and a provision that people have to be served in the least segregated way possible.

And the Department of Justice sent investigators to six large nursing homes that take a lot of children in Florida and found over 200 children living in those nursing homes and found - and the parents of those children said I want my kid at home, but I don't have the choice. I can't get them home.

CONAN: And you said Florida turned down $38 million. It would have required Florida to match some portion of this.

SHAPIRO: No, but it wasn't a match. I think the feeling of - as the Republican administration and lawmakers in Florida, I think (unintelligible), I think they were challenging the health reform, the Obamacare health reform, and I think they felt because this Money Follows the Person Act was expanded in that health reform act, I think they felt that it would look hypocritical if they were taking money from a program that they were challenging in court.

And also it's the way they want to do things. They're trying to depend less on Medicaid money. So they're taking a different approach to how they want to do these programs. Now the state of Florida would say oh, we've got our own programs to get people out of nursing homes. The Justice Department's saying no, that's not working, that's not true. Look, we found 200 children in nursing homes, their parents want them home, and Florida's not providing it.

CONAN: Joe Shapiro is with us. We're talking about children and young adults in nursing homes as the result of disabilities, 800-989-8255 if this is your story. Email us, talk@npr.org. And we'll start with Deborah(ph), Deborah with us on the line from Redlands, California.

DEBORAH: Hello.

CONAN: Hi.

DEBORAH: Thanks for taking my call. I just wanted to give a ray of hope in this story. My husband and I have a son who's in his 30s now who has cerebral palsy. He uses a wheelchair, and he's blind. And when he was 23, because of his circumstances, he went into a group home. It wasn't called a nursing home, but it was a converted nursing home building.

He was 23. The other people who were in that home, of which they were about 50 people, were all in their 50s and 60s. He was miserable, we were miserable. It was a very hard time. Now in California because the regional centers here and a program called Supported Living, he lives in his own apartment with an able-bodied roommate and people who come in and help him get dressed and go to the store and do all the things that he needs to do to live as normal a life as he possibly can. And it's the difference between darkness and light for us and for him.

CONAN: And it must give you - it must have been an enormous relief when you think about the future.

DEBORAH: Oh, oh yes. I mean, I can't tell you how many times we left him, and this other place, which was 60 miles from our home, in tears, you know, and he was in tears. And now when we go to see him, it's just a joyful, wonderful thing. He has his own life and his own friends, and it's just a complete difference.

But at the time that he was in that nursing home, life was very, very bleak for him and for all of us.

CONAN: Deborah, I'm glad this thing worked out, appreciate the phone call.

DEBORAH: OK. I would just encourage people to really go to bat and advocate for their kids because those kids will grow up, and you want them to have a good life. OK, thank you for taking my call.

CONAN: Thank you very much for calling. And Joe, are there more and more alternatives like that?

SHAPIRO: Yes, often parents are creative and come up with ideas. Deborah mentioned that her son's living with someone who doesn't have a disability, who's a roommate, and sometimes parents find situations where they can bring in a roommate and maybe offer reduced rent if the person takes some role in looking after a person with a disability. There are lots of creative ways to do this.

And what's interesting in Deborah's story is that her son ends up in a living situation that would be typical of other young, single men in their early 30s.

CONAN: Yet 6,000 children in nursing homes, still, and all of these young working-age adults.

SHAPIRO: Right, and 14 percent of people in nursing homes are between the age of 31 and 64.

CONAN: So is there going to be a systemic approach that's going to be able to find some solution that would cover - well, in some cases I have to say a nursing home is the best solution - but to get those out who want to get out?

SHAPIRO: By the way, probably anything that can be done in a nursing home we can do in a house with a lot of support. I mean, it can be expensive, but I met - I did a story - you had Olivia Walters'(ph) family on. Olivia Walters is a young woman who's about 23 now, is a very - about as disabled as someone can be, and she's living at home with nursing care that she gets from Illinois.

She gets about 16 hours of nursing home care a day. Her parents do stay up, take turns staying up overnight and doing the rest. She's on a ventilator. She gets her food through a feeding tube and her medicines. The family set up a little - basically a little intensive care ward in that house. And she gets her care at home, and she's lived - she's not had the infections and the bedsores and problems that are very typical of people who live in institutional care.

So it can be expensive, but you can provide better care for people in their own homes. The - by the way states have a - there's a requirement, this is called the institutional bias. So state - a federal law requires states to provide nursing home care for people who are eligible. But they - states are not required to provide this home- and community-based care, even though this is what is preferred by people with disabilities and their families. So that's the structural reform that people are proposing, make that the required care.

CONAN: We're talking about children and young adults with disabilities who live in nursing homes. In a moment, we'll talk with one advocate who's working to bring many of them back home. If this is your story, give us a call, 800-989-8255. Send us an email, talk@npr.org. It's the TALK OF THE NATION from NPR News.

(SOUNDBITE OF MUSIC)

CONAN: This is TALK OF THE NATION from NPR News; I'm Neal Conan. We're talking about the 6,000-or-so children and thousands of young adults who live full-time in nursing homes. Most have physical or cognitive disabilities and need medical care beyond what they were able to receive at home. But as we've heard, many institutions aren't equipped to meet their needs.

So what happens, and what are the alternatives? More about that in a moment. If this is your story, give us a call, 800-989-8255. Email us, talk@npr.org. You can also join the conversation on our website. That's at npr.org. Click on TALK OF THE NATION.

Our guest, Joe Shapiro, NPR investigative correspondent. He reported a series on these issues in 2010. You can find those at our website and listen to them. Again, that's npr.org. And joining us now from a studio in Atlanta is Katie Chandler, licensed clinical social worker with the Georgia Advocacy Office, a disability legal group, and it's good of you to be with us today.

KATIE CHANDLER: Thank you for having me.

CONAN: And I know you recently worked with a young woman with cerebral palsy who was relatively independent but needed some help with daily tasks. And you helped her get out of a nursing home. What worked?

CHANDLER: Well, when I first met this young lady, she moved into the nursing facility after finishing high school. And she wanted to move out of her parents' house. And they weren't aware of options available, what else could be provided for her in the community to maintain relationships and have all the things that most young people have once they finish high school.

So she found a nursing facility. When I first met her, the very first day, she said: I made a bad choice. I feel like I'm living in a box. And so one of the advocates at the Georgia Advocacy Office worked with her over the course of a year and a half to apply for programs, Medicaid programs, that would instead allow for her supports and services to be provided in a home- and community-based setting versus the nursing facility.

So she was able to move out after a year and a half of paperwork and assessments and evaluations and choosing a home- and community-based services provider who would help her live in a home and live with a roommate and have staff support. But she did move out recently.

CONAN: And we'll find out how she's doing in just a moment, but that list of forms to fill out, all of those agencies to navigate, that's formidable.

CHANDLER: It is. It's very difficult for people who are living in nursing facilities to know where to access, how to even get started, how to begin the process of how they could get out of the nursing facility. And a lot of the times, the people who are paid to support them in the facility may not have the most up-to-date information or know what's possible in the community because they work in the facility setting.

And so that's where our advocacy agency comes in with providing some supports around what could be possible and navigating some of those systems.

CONAN: And your patient, your friend, I suppose, how's she doing?

CHANDLER: She's doing well. She's doing well. She's living in a house with a roommate and has support staff and is getting along well, glad to be out of the facility.

CONAN: And again the expense to the state, is it less or more than what it was when she was in the nursing home?

CHANDLER: Well specifically for her - it's usually less. All around, it is usually less for people to have supports in home- and community-based settings versus facilities. Institutions and nursing facilities are, most of the time, the most expensive, lease effective level of care, especially when you're talking about children and young adults who need the same thing that any child needs: a home, family, friends, love, opportunities to learn and grow, recreation, education, social opportunities. And those are the things you don't get in a nursing facility and that, you know, I can't really attribute a cost to.

CONAN: And Joe Shapiro, let me turn back to you. If that's the case, and I don't think anybody is seriously disputing that, why does that logic not inform efforts to change all this?

SHAPIRO: Well partly because, as Katie said, it is less expensive in the long run, and there's also - we used an AARP study that showed that for every one person or child or adult who's served in a nursing home, you can provide home- and community-based support for three people. So it generally is cheaper, but it can be costly to set it up. And so now we're talking about a time when states are - have deep budget deficits. Medicaid's often a big problem, (unintelligible) of that, so states don't want to do the initial setup.

Also this institutional bias that I mentioned that states are required to provide nursing home care for eligible people, they're not required by federal law to provide the rest.

CONAN: And I wanted to get to you on that point, Katie Chandler. Is that something your group is trying to change?

CHANDLER: Yes, we have a group in Georgia called the Children's Freedom Initiative that's made up of the Federal Developmental Disability Network Partners, in addition to some children's advocacy agencies, which has a goal of envisioning a Georgia in which no child lives in an institution.

We firmly believe that all children with disabilities can be served in a community setting, and so we're working on individual advocacy basis and systemic basis and legislative and litigation to try and to create this state where kids don't live in nursing facilities.

CONAN: And it's important to recognize that - some people might say, well, what about those parents, they're just letting their kids down. Sometimes, Joe Shapiro, parents don't have a choice.

SHAPIRO: Sometimes they don't have a choice, or they're not aware of other choices, but you're right, often they don't have a choice, or they made these decisions a long time ago when there were no choices. But it's hard to figure out what to do, and it's important to have an advocate.

You know, I joined Katie a couple years ago when she did something very interesting in Georgia, and she took parents on something she called the study tour. And I should have - you should ask Katie to talk about that.

CONAN: The study tour? Go ahead, Katie.

CHANDLER: Yes, it was an event we pulled together to show young people living in nursing facilities and parents who had their loved ones, their children, living in nursing facilities, what would be possible in the community, what could be possible. And so we arranged visits to three different people - three homes where people live.

Two people had lived in an institution previously and had been out for many years. We visited them. We visited a home where a woman provides support services to two young ladies who experienced disabilities, and they live together as a family and go out and about in the community and do everything that typical families do.

And we also visited a young man who lives with his parents and had never been institutionalized but had nursing support services throughout the day and into the evening at his home so that parents could really see different options of what's available, what we could provide, you know, even though it takes a long time.

And that's some of the struggle in the advocacy is, you know, presenting people who are living in nursing facilities and family members with what's possible and then navigating the system and pushing the system and breaking barriers to get access to the services. You know, there's sometimes a disconnect there. It takes longer than anyone who's languishing in a nursing facility would want it to take.

CONAN: Let's see if we can get another caller in. This is Amy(ph), and Amy's on the line with us from Milton, Wisconsin.

AMY: Hi there, good afternoon.

CONAN: Good afternoon.

AMY: I'm calling today because I have a son who actually will be 10 years old tomorrow. And we were placed, or actually he was placed, in a state institution here in Wisconsin. He was there for only 56 days, and in that setting, he was the youngest child. He was actually the only child in that setting. The other peers, residents, in that setting were into their very late teens, mostly into their 20s. Many of the residents also were in their 50s.

At that time, we had him put in that placement because of his overgrowth syndrome and his developmental delays. He is so large that when he does have behavioral challenges, he was just too large for me to handle at home, and I am a single parent with another child.

And after 56 days, we chose to bring him home, due mainly to the fact of the mixed ages and the care that he was receiving while he was there. We didn't feel that it was appropriate for a pediatric situation, and I think at the time the folks there at that institution really felt the same way, that we just kind of came to an amicable agreement that maybe it was better for him just to be at home for that time and for us to finish, quote-unquote, rehabilitating him at home. And that was in the middle of June, and we are still currently in a period of rehabilitation with my son. But he's doing better.

It has taken a lot of resources, and we have an excellent caseworker through our county who has really done some fantastic work, our home school district, who has helped tremendously. But my fear is that as my son ages, and as I age, as well, what will become of us at that point? And that's even as we get into our, you know, into our late teens and 20s. I'm currently almost in my mid-30s.

And my son, he has an overgrowth syndrome. He's very large for his age. And I know that he will - if he's already physically overpowering for me at this point, and I'm 32, I can imagine in 10 years when I'm 42 or in 20 years when I'm 52 and handling him on my own. And there's a great concern there.

CONAN: I can understand. What's your son's name, Amy?

AMY: It's Connor(ph).

CONAN: Can you - can we say happy birthday, Connor?

AMY: Certainly. You may. We're very excited. This is a huge milestone for us to be 10 years old and to be in school every day and to be at home. And so far, so good.

CONAN: So far, so good. I understand your concerns. Joe Shapiro, I know that this is a concern that many parents in this situation - their children's cases vary, but this is what they worry about.

SHAPIRO: These parents are heroic. They do so much to take care of their kids. They can't do it alone, though. They need support.

CONAN: Amy, thanks very much, and we wish you the best of luck.

AMY: Thank you very much. Have a wonderful afternoon.

CONAN: And I wanted to ask you, Katie Chandler. As you look at the alternatives that parents are trying to find for their children - obviously, every case varies, but the fundamental issue is see if you can get them at home. And I assume in addition to the systemic solutions you're looking for, you go case-by-case.

CHANDLER: That's exactly right, individual advocacy. And sometimes a lot of the work we do is in the crisis mode with preventing a child from going into a facility, a nursing facility or an institution, which is, you know, immediate action needed.

And that involves, you know, calling people in leadership positions with the Department of Behavioral Health and Developmental Disabilities and with Medicaid to try and get services started in the home family support immediately to keep the child out of an institution.

Or there's the more longer-term individual advocacy, where a person is already living in a facility, and we work through all those paperwork and all the steps that are taken to get someone out of a facility.

CONAN: And Medicaid is one of the principal services programs you go through. But there can be problems. What if a child doesn't qualify for Medicaid?

CHANDLER: There can be problems. But for the majority of children living in nursing facilities or who have significant impact under disability, they will qualify for Medicaid. Even if families make more than the poverty level for Medicaid for the family, a child can get Medicaid through the deeming waiver or Katie Beckett.

CONAN: I see. So there are waivers of that sort, Joe?

SHAPIRO: Right. There are waivers, because it's not fair to expect a middle-class family to bankrupt themselves taking care of a child who's disabled, especially when the - like someone like Amy who - you've heard her say that she's got other - I think - did she say she has...

CONAN: Another kid, yeah.

SHAPIRO: Another kid, right. So Medicaid does provide for middle-class families to be able to get these programs.

CONAN: We're talking about the children and young adults who live in nursing homes and alternatives. Our guest, you just heard Joe Shapiro, NPR investigative correspondent. And also with us, Katie Chandler, licensed clinical social worker with the Georgia Advocacy Office and helped start the Children's Freedom Initiative there. You're listening to TALK OF THE NATION, from NPR News.

And Jenny's on the line with us from Farmington, Michigan.

JENNY: Hi.

CONAN: Hi, Jenny.

JENNY: How are you?

CONAN: I'm well. Thank you.

JENNY: Good. I just wanted to give a brief comment on the other side, the perspective. I have a brother who has cerebral palsy, and has had it all of his life. And when he graduated from high school maybe 20-some years ago, he started living in a private support group home, and has moved a couple of times just because my parents have moved around and wanted to keep him close by.

So he's also been in a more senior-based, state-supported apartment complex, I'd say. And then now he's back into a group home with other men and women, similar ages, and the experience has been very positive. They've always had activities, kept him busy. He's able to work, and they take him to work currently.

So, overall, I think the positive - the experience for us has been very positive and also a little bit liberating for my parents. And I may be saying that selfishly, but, you know, as they get older, that's a tough thing for them, and to have to care for that 24/7. I think having that group home situation, as long as it was a positive experience, was good for them.

CONAN: Joe?

SHAPIRO: So a small group home like that, that counts as community-based living, and that's something that the states don't provide enough of. It's - when it's - you know, Deborah, who called first from California, talked about a place where there was 50-some people. You know, that's a converted nursing home. That's really - you can't call that...

CONAN: A group home.

SHAPIRO: ...a group home. They call it a group home, but that's still like being in a nursing home. So Jenny's brother's in a - in community-based living, in a small group home, and that also works. And when Katie Chandler took this group on the study tour a couple of years ago, she showed people small group homes. She showed them adult foster care. She showed families that were - had managed to get aides to keep a child at home.

And it was really interesting to see some of these parents there who had no idea that these options were out there, to see that they can work, and then suddenly imagine that I can bring my kid out of a nursing home and there are these options like that small group home that Jenny's brother is in, adult foster care. There are other options that can work.

CONAN: And, Katie Chandler, it's great to hear about Jenny's brother. But I wonder, aren't there sometimes long waiting lists to get involved in - to get placed in some of these facilities?

CHANDLER: Yes. The homes and the community, yes. There are very long waiting lists in many states. I think Georgia currently has over 6,000 people with intellectual and developmental disabilities waiting on these home and community services either to have help provided in their home, their family home, in an apartment or in a small group home like Jenny's brother currently has access to.

And the thing that I'd like to point out with - when someone lives in the community in a home, in a family home, they have access to real relationships, which all of us need. And they have - they experience with their neighbors and their community members and their family and their friends and perhaps, you know, from place of worship that they go and places that they are out and about in the communities. When you're in a nursing facility, the majority of the time, your only relationships are with people who are paid to be there to support you, unless you have someone coming to visit you every now and then.

CONAN: Jenny, thanks very much for the call, and we wish your brother continued good luck.

JENNY: Thank you.

CONAN: And, Joe Shapiro, thanks as always for your time today.

SHAPIRO: Thank you. You're welcome, Neal.

CONAN: Joseph Shapiro, NPR investigative correspondent, with us here in Studio 3A. Katie Chandler joined us from a studio in Atlanta, Georgia, where she's a clinical social worker with the Georgia Advocacy Office and among those who started the Children's Freedom Initiative. Thank you very much for your time today.

CHANDLER: Thank you, Neal.

CONAN: Next week, a not-unrelated topic: We'll talk about the millions of children and young adults who serve as primary caregivers for a parent, sibling or other family member and the challenges posed by that situation. Join us for that conversation next Tuesday in this hour.

Coming up, we reunite our panel of presidential speechwriters. Paul Glastris and Peter Robinson join us on the art of the stump speech. Stay with us. I'm Neal Conan. It's the TALK OF THE NATION, from NPR News. Transcript provided by NPR, Copyright NPR.

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