Struggling To Care For Disabled Adults At Home

Guests

Tamara Welter, mother of Olivia Welter
Joseph Shapiro, NPR investigative correspondent
Molly Hofmann, advanced practice nurse for the pediatric home ventilation program, Children's Hospital of Illinois

Olivia Welter has been severely disabled since birth. She's received round-the-clock intensive care at home. As of her 21st birthday, she was no longer eligible for state-provided coverage. Her parents now struggle to provide the care that has kept their daughter healthy all these years.

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NEAL CONAN, host:

This is TALK OF THE NATION. I'm Neal Conan, in Washington.

Olivia Welter was born with severe disabilities. She can't move or even blink her eyes. She relies on machines to breathe, eat and to take her medicine. She also needs round-the-clock nursing. Her parents do part of that. The state of Illinois pays for her care, but it's a program designed for children. Earlier this month, Olivia turned 21.

Olivia's mother, Tamara Welter, joins us now on the phone from their home in Lincoln, Illinois. And thanks very much for being with us today.

Ms. TAMARA WELTER: Thank you.

CONAN: And you're home with Olivia right now?

Ms. WELTER: Yes, sir.

CONAN: How she's doing?

Ms. WELTER: Well, she's having a good day today. We both got haircuts.

CONAN: Does she enjoy that?

Ms. WELTER: Yes, she does. So we got her hair cut and fixed and put a pretty new bow in it. So she's looking all lovely.

CONAN: About a week or so ago, Olivia turned 21. And I know when the law under which she's being - her care is being paid for provides for big changes when that happened.

Ms. WELTER: Yes. She's been on the Public Aid waiver program. And according to the way that program is set up, children is phased out at age 21, and then you're supposed to go to another state-funded program that does not provide nursing but provide personal assistance.

And we just know that that's not adequate for Olivia's care because she has great, many pieces of equipment and she needs round-the-clock care for suctioning and all of her respiratory treatment and everything and medication and just things that PAs would not be qualified really to administer to do for her.

CONAN: I know you've said - you were quoted in one of Joe's pieces, Joe Shapiro's pieces, as saying, it wouldn't be safe if aides took care of her instead of nurses.

Ms. WELTER: That's true. She has pulled her trach out. She's pulled her feeding button out on occasion. And you have to know what you're doing to be able to reinstall those safely and quickly to keep the level pads and know what you're doing because literally her life depends on her trach, so it would have to be replaced immediately.

CONAN: That's the breathing tube that goes into her neck and her trach -tracheotomy.

Ms. WELTER: Yes. And yes, and she's hooked up to a ventilator 24 hours a day, seven days a week.

CONAN: And as I understand it, she could have been in a hospital for much of the time. You've chosen to keep her at home, saving, I guess, the state a lot of money over the years.

Ms. WELTER: Yes. Yes, her facility of alternate placement would have to be a hospital similar to an ICU room where the nurses are competent and trained to handle people like Olivia with all of her specific respiratory needs and other needs.

CONAN: But as an adult she would only be provided for in a nursing home, again, may not have the kind of care that she needs. And as I understand it, the adult program would only pay you for home care as much as it would pay for a nursing home.

Ms. WELTER: Yes, that's correct. And now a nursing home would not be adequate because they obviously do not have the type of staffing needed to give her individual one-on-one care, 24/7, which is what she requires. So it would not at all be adequate.

She has a lot of coughing and needs a lot of suctioning. Sometimes you can hardly even get away from the suction machine long enough to empty the canister and get back to re-suction again because she's just coughing so much. And I consider it a life-endangering situation if she was not attended to properly.

CONAN: I know you filed suit against the state of Illinois. Until that suit is decided, they have elected to continue the 24-hour nursing care under the previous program. But...

Ms. WELTER: Yes.

CONAN: ...what are the implications if you lose the suit?

Ms. WELTER: I don't know, frankly. I mean, my husband, John, and son, Brian, of course, are actively involved in Olivia's care as well as I am, but it's beyond what we can handle, what we could handle. And, you know, you have to sleep at night. You have to still carry on with some other resemblance as normal activities. And it's just would be very difficult to do if we had to provide all of her care around the clock.

CONAN: I know there are other families in your situation. Are you in touch with them?

Ms. WELTER: We have not been in touch with very many of them. There are a couple of families in the Peoria areas and I have talked to - up with those mothers, but no, we had not really been in very close contact.

CONAN: Well, we wish you the best of luck. And could you wish Tamara - Olivia a happy birthday for us.

Ms. WELTER: I certainly will do that. Thank you.

CONAN: Tamara Welter joined us on the phone from the home she shares with her daughter and her son and her husband in Illinois. With us here in Studio 3A is Joseph Shapiro, NPR investigative correspondent. He's done a story from which we got the information on Tamara Welter and Olivia.

If this is your story, give us a call: 800-989-8255. Email us: talk@npr.org. We want to hear from those of you facing the similar situation.

And Joe Shapiro, in some senses, this is good news. I know that Olivia's parents were told when she was born that she would be dead by the time she was 10.

JOSEPH SHAPIRO: Right. And so the expectation was that we were providing a program to let these kids live at home because of this kindness, that they were going to die, that they would never live to be - to get to 21, we wouldn't have these problems. So now we have good technology. We have this great care that the Welters are provided, this constant, loving attentive care. She's talking about how she has to use a suction tube to get the mucus out of her daughter's mouth and throat.

And when I was there, there was a nurse. She was doing it every 15, 20 minutes. It's constant care. So the family has done it and the nurses do it. And as result, these people lived a long time.

CONAN: And so as the program is varying from state to state. But this-is the Illinois a typical case?

SHAPIRO: This is typical.

CONAN: And what happens when these suits are filed, do typically people lose?

SHAPIRO: Actually, now - in Illinois, sometimes they lose but more often recently they're winning, and it's because we've established civil rights law that says that people have a right to choose their care at home, and people are suing under the American's with Disabilities Act. In the case of the Welters, the Department of Justice actually joined in as a party they trust in a class action lawsuit that their part of.

CONAN: And how many people we're talking about?

SHAPIRO: In - well, there - since this waiver program started, there are more than half million children that have been on it. And in Illinois, Illinois says they have 600 children in this program. And every year, 20 - about 20 age out.

CONAN: Or graduate if you will.

SHAPIRO: Or graduate, yes.

CONAN: And this is how expensive?

SHAPIRO: Well, in Olivia's case, the nurses alone were running about $220,000 a year. As you mentioned before, now she has - Tamara, well they say they - look, they've saved a lot of money for the state because the alternative was for her to be in a hospital. The state acknowledges that it was much more expensive.

CONAN: And obviously, states, certainly Illinois, are facing a deep budget crisis.

SHAPIRO: In Illinois, the budget deficit is $15 billion. States are facing all-time record-high budget deficits. Medicaid is a big part of that. They're struggling. They're looking for ways to cut. They're required by their state laws to cut. And they're facing this situation where the technology is letting people live longer in this expensive care.

CONAN: And there is sort of an understanding. I think state officials understand that if the children, or the no longer children, are put in this situation, parents will take over their care and will do this at no cost to the state.

SHAPIRO: Right. And caregiving is something that the families do for free all over this country. And it's a cost to the family members when somebody goes to take care of someone, there was a study that estimated that we give up about $650,000 over a lifetime in the wages and salary benefits, wages, the 401k contributions, the Social Security money that we would get. So, a lot of the caregiving in this country is done for free.

CONAN: And is there no program in any state that covers these cases as these kids age out?

SHAPIRO: Some states have actually chosen to keep the same level of care as they age out.

CONAN: For example?

SHAPIRO: I believe Minnesota is one.

CONAN: And in Illinois, I believe the state waiver covers medically fragile and technology dependent individuals under 21 years of age...

SHAPIRO: Right.

CONAN: ...who meet the departments eligibility criteria, but the individuals would otherwise require a level of care provided by and be at risk of institutional care in a skilled nursing facility or hospital, the cost of which would be reimbursed under the state plan.

SHAPIRO: Right. And then the catch-22 for the Welters is that when she turns 21, they say, now you're part of this other program and we don't use as a measure - we don't use a hospital care anymore. We use a less expensive nursing home care.

So for your daughter to be at home, it has to cost less or the same as it would be in the nursing home. Before she was 21, it would be less or the same of the cost of the hospital. The nursing home is a lot less so we offer you a lot less money or we'll put her in a nursing home.

CONAN: When we come back from a short break, we want to hear from callers, people whose story this is. 800-989-8255. E-mail us, talk@npr.org. But Joe, I have to ask you, what kind of reaction are you getting since this story ran last week?

SHAPIRO: Well, we have had quite a spirited debate on our website. People wrote in and a lot of people were supportive, but we had a lot of people who said, this is a lot of money. As a taxpayer, I don't think we should be paying for this. And actually, some of it was, I thought, was pretty rude. They said that...

CONAN: Callous.

SHAPIRO: Callous. They said that - why is she living? Well, she's living because this is a young woman who was - her parents have kept healthy. This is not a woman who is dying. You know, we think often of somebody who is hooked up to a lot of machines, ventilators and things like that as someone who's dying.

CONAN: Who's being kept alive.

SHAPIRO: Being kept alive. She is healthy. We do not, you know, we pay for these things. We dont say to somebody who needs a heart bypass operation for $60,000, you know, you would die without it, you don't get it because it's too expensive. This is not a person who's at the end of life.

CONAN: It's not a society that leaves ill children out on the hillside.

SHAPIRO: Correct.

CONAN: We're talking with NPR's Joseph Shapiro about the challenges faced by many families with severely disabled adult children. Many programs that cover health costs are not nearly as generous for those over 21. If this is your story, 800-989-8255 is our phone number. You can also reach us by e-mail, talk@npr.org. You can also join the conversation on our website. Go to npr.org, click on Talk Of The Nation.

Stay with us. I'm Neal Conan. 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 in Washington.

We're talking about families who care for severely disabled children. Many can't breathe on their own or eat. They require round the clock care in many cases. A number of state programs help pay for that care at home, but as we've heard, when those children turn 21, they're considered adults, no longer eligible in most states for the same coverage.

If this is your story, give us a call, 800-989-8255 is our phone number. The email address is talk@npr.org. You can also join the conversation at our website, thats at npr.org, click on TALK OF THE NATION. We're talking with NPR's Joseph Shapiro who reported this story last week on ALL THINGS CONSIDERED. You can find that story online also at npr.org.

And let me see if we can get a caller in. This is Ron, Ron with us from Watersmeet(ph) in Michigan.

RON (Caller): Watersmeet, Michigan. How are you doing today?

CONAN: Very well, thanks.

RON: Why I was calling, my stepdaughter Amanda, she's actually now 26. They said she would never live past - they didn't expect her to live past her teens. My wife, Francis, has been a devoted mother. She has - pretty much her entire life has been devoted to the care of Mandy. She could never seek higher education. It's a 24-hour job. The issues, like, with her because she does receive money for taking care of her daughter.

But she makes like $100 too much to get, like, Medicaid. So the home health care union that she is in, the benefits that they offer, basically, are just a joke. It's almost not even worth the money. And medical care and costs have been made so economically prohibitive for families that do actually want to do and take care of their children without state assistance, but without it, there's just no way. Her diapers alone would break us financially.

My comment is, is what are they doing to address the needs for, like, some of the parents that actually - they can't get out or have the opportunity for full-time care? Now, Amanda, like I said, cerebral palsy, mental retardation. She's at the level of a one-year-old. And she's already 26 and, God willing, she'll live another 26 years more. But for helping the actual caregivers themselves, they don't seem to be made conducive for them to do what's right for their family.

And I guess that's the only comment I've got, just from an outside observer. And I'll take any comments off the air.

CONAN: All right, Ron. Thanks very much. And we wish you the best of luck.

RON: Thank you.

CONAN: Joe, any...

SHAPIRO: Well, what we're doing are these programs, these programs that people like Mandy and Olivia Welter depend upon and that their families depend upon. And these are the programs that states now, with these record budget deficits, are looking for ways to cut or they're not in a mood to expand them. So these families depend on these programs and there's more pressure on these programs -there are some things, by the way, in the new health overhaul bill that would encourage states to do more to provide home-based care.

CONAN: There's also a question that Ron implied, but didn't ask. If his stepdaughter lives another 26 years, her parents may not be around to provide that care.

SHAPIRO: That's right. And that's one of the biggest worries of parents of severely disabled or disabled children. Who's going to look after my child after I go? And we have waiting lists. So we have programs that provide community-based care where you can get aides and other people to come in and provide that care.

The demand for those programs has just grown in the last 10 years. The waiting lists have doubled from 200,000 to - around the country, 400,000 are waiting to get into home-based care.

CONAN: Joining us now is Molly Hofmann, an advanced practice nurse for the pediatric home ventilation program at Children's Hospital of Illinois. She works as part of the team that cares for Olivia Welter. We talked about her earlier in the program. And she joins us from the hospital in Peoria. Thanks very much for being with us today.

Ms. MOLLY HOFMANN (Advance practice nurse for Children's Hospital of Illinois): You're welcome. Thank you for inviting me.

CONAN: And I wanted to talk about medical care, but I also wanted to talk, just for a moment, about Olivia. You know her. What is she like?

Ms. HOFMANN: Well, Olivia is a beautiful little 20 - I say little, but she's not little anymore. Olivia is a beautiful 21-year-old girl. She is wheelchair-bound and she is trached and on the ventilator, but she does interact by ways of moving her arms around and blinking her eyes when she gets excited. And she has wonderful parents that take very, very good care of her in the home setting.

CONAN: We've had more than a few callers and, I think, more than a few emailers and I think Joe mentioned, contributors on our website as well, who say add up the cost of this and it's hard to justify it. Can anybody who knows these children or these adults, as they are now, make that kind of remark, do you think?

Ms. HOFMANN: No. But, of course, there's the conversation of how much does it cost to take care of these kids. And I did actually, before calling in, look at the some of the numbers of the cost and I heard Joe mention earlier, you know, the 220,000 a year cost that Olivia has being in the home. But to put a comparison to that, if Olivia were to be in the hospital in the intensive care unit, which is where she would have to stay if she was hospitalized, her cost would be over $600,000 a year. So you can see the kind of money that her family is saving.

And there's also, you know, the great ethical question that goes along with that, in the sense of, is this necessary cost? And I hear that and have seen that in some of the comments just on the story that was posted on Olivia initially. And, you know, there is no right or wrong answer for these parents that they are faced with the decision to trach their child, have them placed on the ventilator. And, you know, I don't have a comment on justification of the cost because there was not a right or wrong decision for her parents to make in determining this.

CONAN: I know that in other cases you've testified on behalf of families that had been fighting for continued funding. Have you or will you testify for Olivia?

Ms. HOFMANN: If asked, certainly.

CONAN: And what would you say?

Ms. HOFMANN: I would tell them about how well Olivia has done in the home. She has not been hospitalized for several years and it's a direct reflection of how well she is taken care of in the home setting. Her parents to an excellent job making sure that she's suctioned and that she has airway clearance and mucus clearance taken care of, that she's kept free from infection, that her sites are kept clean. And her nurses are just as astute.

And, you know, we could not say that that would happen if she was here in the hospital. There's all kinds of bugs floating around in hospitals and, you know, who knows what kind of infection she could have gotten during the time that she's here and the same goes if she was placed in a nursing home.

CONAN: There is also the option, the state might say, of aides as opposed to 24-hour around-the-clock nursing attention. Are aides a realistic option or is Tamara Welter and her husband, are they being alarmist to say the aides could not handle the situation?

Ms. HOFMANN: No, they're not being alarmist by any stretch of the imagination. So being a patient of our program and any similar home-ventilation program that manages kids with trachs and ventilator needs, you would find similar requests in the fact that the child is not to be left in attendance of somebody who is not an RN or an LPN that has undergone training in airway management.

The PAs that the state is now telling the family that they are responsible for hiring have no medical degree, have undergone no education, not even a class. They have no licensing that theyre required to get. You know, so to put Olivia's care in their hands with no background knowledge is not realistic. In addition to that, a lot of her care entails giving her different medications that she needs and the PAs cannot do that. They are not licensed to give any medications.

CONAN: We had this email from Ken in Beaverton, Oregon, and I wondered if you could respond to it. We are using medical technology to, quote/unquote, "save children" who will only face a life of pain and suffering and keeping old people alive beyond their time and, in many cases, their wishes. We have to face the fact this is not a life-affirming process, but a cruel one. Do you think this is cruel in Olivia's case?

Ms. HOFMANN: No. Olivia's not in pain. You know, this isn't anything that's being done to prolong her life. You know, I don't really know what to say in response to people's remarks such as that because, like I said, it comes right back down to - when you're faced with a decision as to if you do this intervention, put a trach in your child and have them on the ventilator, then, yes, they will live.

And in Olivia's case, it was unknown as to what caused her neuro-muscular disorder. So I'm sure back 20 years ago when her parents were faced with this, it was not - it was completely unknown to them as to whether or not she would be more functional than what she was at that time and if she would thrive more than what she already had. And I just don't think that they made a conscious decision to do anything to their daughter that would inflict more pain or suffering on her, nor does she show any signs of being in pain or suffering.

CONAN: Well, thank you very much. We know you're busy. We'll let you get back to work.

Ms. HOFMANN: Thank you.

CONAN: Molly Hoffmann, an advanced practice nurse for the pediatric home ventilation program at Children's Hospital of Illinois, joined us on the phone from the hospital in Peoria.

And Joe, we are getting a - I think as story on the Web did as well, we're getting a lot of responses of people saying, how can we justify? Why do you think there's so much distance on this?

SHAPIRO: I think partly because we have this image that somebody who's on a lot of machines to live that they are in pain, that they are suffering, that we're prolonging life.

But as Molly Hofmann said, Olivia is not in pain. And her parents have done this amazing job. I think any - like Molly said, any condition would just -it's amazing that somebody who's that disabled has gone seven years and only been hospitalized twice, only one bedsore her entire life. That's an amazing record of caregiving that her parents have done. And theyve kept her free of pain. They kept her from suffering.

Well, I think we have this image that someone who's technology dependent is that way. And by the way, there are a lot of people who are on ventilators, who - not as disabled as Olivia, they go to college, they - actually, a friend of mine, Paul Longmore, was professor at San Francisco State University, just died. He used a respirator at night. Ed Roberts, who was the head of the World Institute on Disability. There are a lot of people who depend on respirators during the day, at night, and lead what we would consider normal lives.

CONAN: Yeah. My friend Habern(ph) wrote novels and short stories and...

SHAPIRO: Yup. Right. Yeah.

CONAN: ...while on a ventilator. Let's get - excuse me Susan on the line, Susan calling us form Buffalo, New York.

SUSAN (Caller): Yes. I work in the developmental disability field. And Joe, Ive been talking to my colleagues about your story last week - and this follow-up today.

What's really bothersome to me is that the whole issue of quality of life as it relates to individuals who are on a ventilator. They tend to have quality. I advocate for near 200 individuals, and one of which who is on a ventilator. He goes to school. He's 20 years old, goes to school. He actually can swim. He goes into a swimming pool. He goes out into the community with his parents. And I think there really is a misconception when people hear ventilator, you know, that people - that it's an end-of-life type of situation.

I'm really troubled also, you know, it's a slippery slope when you start determining who's going to live or who should live. I mean, one of the - some of the first people that Hitler sent to the gas chambers were the developmentally disabled. And I would hope that we live in a civilized society, where, you know, people are not choosing who's going to live and die. And the fact that people feel that their tax dollars, you know, shouldn't be spent to care for these folks, it could have been your child.

CONAN: And who among us...

SUSAN: It could have been your child.

CONAN: And who among us would decide, beyond that panel, who decided which got the funding and which didn't?

SUSAN: Exactly. Exactly. I just find it very troubling. And I'm so glad that you're airing a story such as this.

CONAN: Susan, thanks very much for the call. Appreciate it.

SUSAN: Thank you.

SHAPIRO: You know, Susan's call reminded me - I mentioned my - Paul Longmore, who recently died, was a professor in California. He had polio and walked, he was sort of hunched over and he used a ventilator at night. People used to - he talked about people would come up to him and say, boy, if I were as disabled as you, I would kill myself. And, you know, he felt that was so absurd because here he led this very full life.

And - but I think some of the debate that we saw to my stories sort of shows what disabled people have told me for a long time. That they have - that they know, that they feel that a lot of people can't imagine living the way they do and they're afraid of them. They fear that disability, and they translate into something like - that somehow they shouldn't be living.

CONAN: NPR's Joe Shapiro. We're talking about health care for adult disabled. You're listening to TALK OF THE NATION, from NPR News.

And let's get Emily on the line, Emily with us from St. Louis.

EMILY (Caller): Hello. How are you?

CONAN: I'm well, thank you.

EMILY: I just wanted to let you know, my brother, when he was 23, he's 26 now, he had actually became disabled, like, right after that 21-year-old, you know, time period. And he went from one day being a walking, you know, typical young man to not being able to talk, walk or speak due to a brain hemorrhage from brain cancer that we didn't know about.

And they, you know, the lady that just called that was talking about quality of life. You know, my mom takes care of him now. And as he gets older, more of his programs are getting cut. And, you know, he smiles, he tries to talk. I heard his voice yesterday for the first time in almost, you know, four years. And, you know, I don't think anybody knows what it's like to be in that situation until you're there and then afterwards, for, you know, not getting as much help as you need.

And you're, you know, you're working your tail off to try to help him, and slowly, things just keep getting taken away from you. His therapies are getting taken away, so he has to be on Medicaid now. And, you know, it gets very frustrating, you know, helping her - with her and helping him with - as a caregiver.

You know, as these people get older, you know, it was choice. Yes, we chose to try to help him through this. And, you know, it's - after a while, you just get tired, you know, of people, you know, kind of commenting on you, oh, you should have just let him go or, you know. So it's just one of my comments.

CONAN: Do you get that a lot, Emily?

EMILY: Yeah. Some people. Some people, yeah, they don't - I don't think they understand - no, we couldn't do it. Well, you know, you're not - you don't know what you're going to do or what choices you're going to make until you are in that situation. And I don't think anybody should be able to have the right to judge what you do or how you do (unintelligible) and hopefully no one ever is put in that situation. But if you are, you know, you need to be able to make that choice about how you're going to take care of your loved ones.

CONAN: Emily, thanks very much. And we wish your family and your brother the best.

EMILY: Thank you.

CONAN: All right. Here's an email, this from a listener who asked to remain anonymous. This is my story, or should I say my son's story. Ohio does not have an age-out. My son is 22 years old and still receives nursing care provided by the waiver program. It allows me to work 40 hours per week. Without that, I don't know what I would do. All of his other care is, as you said, provided free by me. But let me say that caring for him has been the most rewarding time of my life. I don't know what I would do without him in my life.

And I think the Welters have said similar things to you, Joe.

SHAPIRO: Right. We've - we see a lot of love, of this family's gift to their children, this caregiving. Tamara Welter said, what, you know, what would you do for your child? But not everyone can do this 24-hour care giving. As Molly Hofmann had - from the clinic where Olivia goes, said some - you know, not everyone can do it. Some parents do end up choosing a nursing home or another place for their child.

CONAN: Joe Shapiro, investigative correspondent for NPR. His story on this issue ran last week on ALL THINGS CONSIDERED. You can find a link to it at npr.org. He joined us in Studio 3A. Joe, as always, thanks very much.

SHAPIRO: Thank you, Neal.

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