THE WHITE HOUSE
Office of the Press Secretary
REMARKS BY THE PRESIDENT IN CONFERENCE CALL WITH CAREGIVERS ON LONG-TERM CARE AND THE HEALTH SECURITY ACT
The Oval Office
10:36 A.M. EST
THE PRESIDENT: I want to thank you all for joining me today and for setting aside some time so that we can speak together and that together we can speak to the country about the long-term care problems in America. As we just heard, we have people from California to New York on the line; people for whom long-term care is not just a health reform issue, but a real job.
One of the most important things that our health care plan is attempting to do is to make your job easier by creating a new home- and community-based long-term care program that gives people in need of assistance new choices, and gives more options for long-term care, doesn't automatically push people into nursing homes to get some public assistance, and encourages people who are trying to take care of their family members to do it by giving them some help to do it.
If this portion of the plan passes, for the first time we'll have a nationwide program that will give Americans, regardless of their income, some long-term care services tailored to their needs and provided in the place that they want to be most, in their own homes.
But the main purpose of this conversation today is not for me to talk, but to hear from you -- the people who are real experts -- to understand how the approach we're taking here in Washington will affect homes and communities like yours around the country. I think it's very important that people in the Congress and the decision-makers understand just how many Americans there are who are in the situation that you're in.
And so, let's start with Eve Lefkowitz in Langhorne, Pennsylvania. Eve is a visiting nurse who provides care for both her parents. Eve, why don't you talk to us a little bit about --
Q Good morning, Mr. President. The situation here is my mother is 70 years old and she was diagnosed with lung cancer seven years ago, at which time she did receive some surgery and was basically told that she was pretty much cancer-free. She was rediagnosed with cancer two years ago -- the same type of cancer.
At this point, she needs help with bathing, dressing, meal preparation; she's on continuous oxygen, and also she needs help with ambulation because she forgets about the oxygen tubing and gets wrapped up in it and trips on it.
My father is 71 years old. He is mentally ill with severe depression. He goes to an adult daycare program four hours a day, five days a week, and at this program he receives group and individual therapy. For him, simple tasks like getting out of bed, are very, very difficult.
In the last two years, my husband and I have seen my parents decline in health, and we saw that they were becoming isolated and their sense of self-worth was rapidly plummeting. My husband is self-employed. I work part-time for the Visiting Nurses Association of Greater Philadelphia as a visiting nurse, like you said. And we have two young children, ages 3 and 6. My parents basically needed to be with people who needed them, and we felt that we could benefit greatly from being around the children -- that they could benefit from being around the children and the children also would certainly benefit from having their grandparents be a part of their daily lives.
Recent periods of confusion and disorientation in my mother's life have forced us to hire a live-in care person, which is astronomical in cost. Also in addition to that, we have medical tests and doctors visits and medication that are just completing draining their modest savings, to the point where there just won't be enough money in a very short period of time for us to continue this type of care.
And that's pretty much what's going on here.
THE PRESIDENT: Thanks, Eve. Before I respond, let me say -- can all of you still hear me?
THE PRESIDENT: One of you has been talking to somebody else while Eve was talking. You may not be able to hear her talk, but we can hear you. So if you talk while someone else is talking, then we won't be able to hear the person who is talking. So please be careful about that.
Let me say, the situation that you have outlined is one that a lot of American families are struggling with. They want to keep their parents in the home. They want to keep them around the grandkids. But they have huge out-of-pocket costs. They know if the parents go to a nursing home, especially if they just spend their resources and go to a nursing home, they can get some help.
Now, under our plan, your parents would be able to stay in your home and get many of the services that they now have to pay for themselves, including adult day care, some help with home health services and medications. People have to make a contribution alright based on their ability to pay. So it's not free for everybody regardless of their income, but there would be a support program. In almost every case, this would be cheaper for the government that providing nursing home care. But it will give people who have certain health problems and disabilities much greater choices about how and where they get the care. And it would enable families like you, yours, that are really close-knit where you've tried to keep your family together to be able to do that and succeed.
So we are going to do our best to help you. And I must say, I really admire you for doing this.
Q Thank you.
THE PRESIDENT: Beth and James Crampton, are you all there from Omaha?
Q Yes, we're here.
THE PRESIDENT: Beth is a 23-year-old recent college graduate who, along with her father, takes care of her mother. Why don't you talk a little about your situation?
Q Okay. Ten years ago when my mother was diagnosed with Alzheimer's disease, I had no idea what to expect. I was only 12 years old. As I grew up, my mother slowly slipped away. She gradually lost the ability to care for herself, became more and more confused. And today, she can only speak a few words at most.
It was a challenge to care for her at home, but my father decided early on that we would do that. Her own frustration toward her illness and a fiery temper made her behavior unpredictable and sometimes volatile. Early on we tried a day care center for her, but before a few weeks were up we had to remove her from that program because they were simply unable to handle her erratic behavior. Later we tried to hire someone to come in to the home, but her bizarre mood swings and actions made them frightened and they eventually were unable to handle it as well. And it became clear we were on our own.
So my father retired early from his job as a professor at Creighton University and took a part-time job there instead. And I gave up some of the carefree college lifestyle that my friends all took for granted. But, really, we have been lucky financially and emotionally. My tuition was paid as a benefit from his job, and we have had some help from a volunteer program here in Omaha. This program allowed us the luxury of having my dad attend my graduation last December. These are the kind of things that make the difference -- it's that support that matters most to us.
But most importantly, we're together. We shudder to imagine what would have happened or what this would have been like if either of us were alone. To us, in the big picture, one thing is clear -- my mother may have changed a lot in the last -- but her smile will still light up a room. And every night that we sit down to dinner as a family, we offer her community and security and a sense of belonging. In short, we offer her something no other care could give -- a home. So just having her here makes our sacrifices seem small. And I thank you for this opportunity.
THE PRESIDENT: Let me ask you something. You said your father was able to attend your graduation. Did someone come in and care for your mother during that time?
Q We did. The senior companion program here in Omaha has allowed us to have a volunteer who comes in and is familiar with my mother and can help care for her. So she made special plans and came in that morning so that he could come; otherwise there would have been no way he would have seen that graduation.
THE PRESIDENT: I really identify with this. I've had an uncle and an aunt with Alzheimer's and I've seen what it can do to a family. And I admire you so much for staying committed -- you and your father -- to taking care of your mother.
One of the things that I think is important to point out that you have just illustrated with the story that you had, particularly for families where maybe there's only one person who is caring for an Alzheimer's victim -- is that there needs to be some respite care for family care-givers, so people like you and your father can at least take a break and know that you can have a lot of confidence in people who are with your mother. And our plan would provide some help to do that, would make it possible for people who are carrying for family members with Alzheimer's to have people come in on a regular basis, like the person who came in for you, all across the country to provide respite care, so that you would never have to fear at least having some basic normalcy in your life that you were hurting your mother.
There are people, as you know, all across the country who are doing this now, and Alzheimer's is an issue we have to
confront head on in other ways. We also, in our health care plan, invest more than $20 billion more into preventing and combatting diseases that disable older Americans including Alzheimer's, along with breast cancer and heart disease.
So I hope that all these things will be helpful to you. And again I want to thank you for the example you've set. I really appreciate it.
Is Goldia Kendall there?
Q Yes, I'm here.
THE PRESIDENT: From Jonesboro?
THE PRESIDENT: My home state -- well, it's nice to hear your voice.
Q It's good to hear you, too.
THE PRESIDENT: Are you really 85 years old?
Q I'm 85, I'll soon be 86. My husband is 89.
THE PRESIDENT: And she's worked all her life as a cook and a nurse, and her husband is a retired factory worker and a carpenter. And he had a stroke a few years ago.
Why don't you tell us about your situation, Ms. Kendall?
Q Well, he had Alzheimer's and then he had a stroke. And he's bed-fast; he's been bed-fast for five and a half years. I've had him in a nursing home a few times just a few weeks at a time, but, Mr. President, the nursing home don't fit him. And anyway, I've got him home, and I take care of him.
I don't never go to bet until 11:00 p.m. at night. And I turn him the last time and as soon as I get ready to go to bed and I sleep about three or four hours; I get up and turn him and I take care of him again. And then I go back to bed. And anyway, I have to stay here 24 hours a day, seven days a week; you know how it is. And I don't have anyone to see after him while I -- I have to go get my groceries and pay bills and tend to things on the outside. But I have to leave him. Of course, he can't move. And then I have the rails up. But anyway, I don't like to leave him.
And it's getting to me, too. I'm getting down. The last two years, I can tell -- I have a heart valve leaking. I've been on medicine for two years now. But anyway, I need someone to stay with him while I go out, because when I go to the store I'm worried about him. I hurry back. And that's my problem, is needing someone a day or two week or something in the way of taking care of him while I get out and get some things done.
I've been listening to you talk, and I hear you say -- I heard you say that you all was working on that and going to put it through, this respite, you know, people needing someone to sit with their husband or loved ones while they're out.
THE PRESIDENT: Yes, what we want to do is to, basically, reward people like you who have the courage to do what you're doing. I mean, to take your husband out of a nursing home and start caring for him all by yourself at your age is an astonishing thing. And when I was governor of our state, I worked to try to give people more choices in long-term care. But with the way the federal programs work today, there is a limit on what you can do. So our
plan would give people like you a chance to get some help from nurses and other assistants who could give personal care to your husband in your home while you go out and run errands and get a little break from time to time. And, again, it would be helping you, but it's also less expensive for us than if your husband were in a nursing home.
Q Well, yes.
THE PRESIDENT: So, I sure admire you. I hope that I'm in half the shape that you are if I get to be 85. I really think it's very impressive that you're doing this, and it's a real tribute to your commitment to your husband. I appreciate you so much.
Q Well, I'm proud of you, too. He's helpless, completely. He has a feeding tube in his stomach; I have to take care of him. He has a motor to keep air in his mattress -- the doctor wanted him on an air mattress. And he's been taken care of real good. The nurse comes every week and the aide comes five days a week, and Doctor Owens watches over him very close. And they all are very pleased of me and my work -- the way I take care of him.
THE PRESIDENT: The hospital has good outpatient services there. I know about that and that's good.
THE PRESIDENT: Well, thank you very much, ma'am.
Q Well, it's good to talk to you.
THE PRESIDENT: Thank you.
Q Thank you. I voted for you.
THE PRESIDENT: Well, thank you, I appreciate it. (Laughter.)
Q I watched you on the television -- every program I can.
THE PRESIDENT: Thank you so much. It's nice to hear your voice and good luck to you.
Q May God bless you in your work.
THE PRESIDENT: Thank you.
Is Gene Hayes there, from Fresno?
Q Good morning, Mr. President.
Q Good morning, Gene. Gene is a victim of Parkinson's Disease, who's caring for his wife who suffered a heart attack. And I think you also are caring for your father.
Q That's right.
THE PRESIDENT: Why don't you tell us a little about that? How old is your father?
Q He's 93; he'll be 94 come May.
THE PRESIDENT: Well, tell us a little about your situation.
Wait a minute. Ms. Kendall -- hold on one moment. We hear somebody talking on the line here. Everybody, please be quiet.
Okay, Gene, go ahead.
No, we can hear you talking, Ms. Kendall. Be real quiet, so I can hear Mr. Hayes.
Q Oh I see, oh, thank you.
THE PRESIDENT: Bless you, that's all right. Go ahead, Gene.
Q On October 1, 1988, the wife had a stroke and it left her in a comatose state. Velora was in the hospital for 11 days and ever since that time when we've had her here at home.
I've heard different people there talking and we've got the same situation in a lot of areas here, but we've had to go on to kind of talk about long-term health care and things that we might need through the experience that I'll had here. We've had a lot of help through the community. I know they had a big dinner for us and all, and raised money for Lora. But, finally, it's run out after all these years.
But Lora, she has to have total care -- someone by her bed for 24 hours a day. She has a lot of phlegm in her throat and someone has to be there to take care of that situation, where she won't be choking. And we turn her every two to three hours. And she had one -- I have to bring this up -- she just had one bedsore and that was when we took her home from the hospital. Since that time, why, she hasn't had any type of bedsores at all and she's been in bed now for going on six years. Each day we get her up and set her in the chair for an hour and a half to two hours after her bath. But it seems like she's following a lot of sound now and everything, and I think she's actually getting better.
I think to be a home care-giver that we need the three ingredients I'd say would be love, hope and faith. And we just pray every day that this will be the day that she'll wake up. We do have a lot of care here that I heard some of the ladies say they didn't have, like we have the Central Valley Care-givers Resource Center, and they furnish respite care for us and they take care of times that we need to be away from home; help us with the financial part there.
THE PRESIDENT: Do you have out-of-pocket expenses for help that you have to pay?
Q Yes, I sure do. I have to have help around the clock, and there's 10 hours that we take care of her solely by ourself. But other than that, I have a day person and a night person and then I have a relief person that kind of helps.
THE PRESIDENT: And you have to pay for them out of your own pocket?
Q Yes, I do.
THE PRESIDENT: You don't have any health insurance that covers that?
Q No. When this happened, she was 61 and we didn't have no Medicare. We wasn't eligible for it -- we was too young. And insurance, I just dropped it six months before -- we had no insurance. So we kind of sifted right through the cracks at that point. And we've been having our retirement savings put up and we've been using that, but it's begun to kind of dwindle away. And we had to sell several things, like our motor home and things like that. But we just take it one day at a time and just trust this will be the day that she'll get better.
THE PRESIDENT: And you've got your father there with you, too, right?
Q Yes. Dad's 93 and he has heart problems. We have to give him medicine a couple times a day and we help him with his bath. I've got to help him with his bath, and at times we help him with his clothing. But Dad's a big help, too. He sits in his wheelchair and he watches her all the time. He never lets us forget when it's time for her medicine, or it's time to turn her. He's always there to say, hey it's a certain time. And I don't know what we would do without Dad, because he helps us, too. But the three of us just make out fine because we have a lot of help and it seems like things have been going real well.
THE PRESIDENT: Good for you.
Q I'm thinking about a little later on, it might come to mortgaging; but we're going to take that one day at a time.
THE PRESIDENT: I wish you would. I wish you'd come see us. Take care of yourself, sir. And thank you for your example.
Q Thank you.
THE PRESIDENT: Is Mary Hammer there from Blacksburg, Virginia?
Q Yes, Mr. President, this is Mary Hammer. And I guess my story's a little different from the rest of them. I'm an 80-year-old woman that has been in a head-on collision, so I'm an amputee as well, unable to walk. I've been in a wheelchair about 20 years and have made out just fine because I still have my hands and my arms and a wheelchair. And with my Social Security income I was able to make it. But a year ago, or less than a year ago, in October last year, I had a stroke on the right side -- or the left side. And I don't have use of my left hand now. And I'm amputated on the left side. So, I only have one hand to work with, and I've managed to get along that way.
But they put me in a nursing home after I had the stroke for about 6 months, and I was very unhappy there because my mind was okay and I could think of things I could do for myself if I had the chance to. So, when I got so discouraged over there, I got ahold of some aides to help me to get home and see if I could try to transfer by myself. And since I figured I could do it with a little help, I was able to tell them I wanted to get out of there. They didn't want to let me get out of the nursing home. But I decided, I put myself in and I'll get myself out.
So, I got my church folks to come and pick me up. And I gave the nursing home my notice I was leaving. Then I had to arrange for all this help at home. And this town of Blacksburg, Virginia, is where I live; and they are one of the best places in the world to live. This has been the greatest place for me because all the services they have provided through the agency on aging and the social services and all the care that the church folks have come and administered to me, I feel I am very, very blessed. The kind of assistance I still need is help with bathing and dressing. And I transfer pretty well. But I need meal preparation and doing the household tasks.
And it's been a blessing, I want to tell you, how much I thank you and the government of the United States for providing the help that I've been getting, including the nursing home; because I am on such a low income -- Social Security is only $288 -- so it is a real blessing that all these things have been done for me. And the government has provided so --
THE PRESIDENT: Thank you. You know, we wanted you to be on this call today because the local Department of Social Services where you live has done a good job in providing the kind of personal care and companion services that you have. And I appreciate you saying such good things about them.
Q They're wonderful.
THE PRESIDENT: Because what we're trying to do is to make sure all the people in the country, especially elderly people or people with children with disabilities, have access to that kind of help. We don't propose to create a whole new program or a whole new system but to build on the good things that are out there -- the adult day care services, the senior center program, the home health services, the personal care services -- all these things that are working out there in the country. What we're going to try to do is to make sure that each person who needs the help can have whichever of these services they need and that they know they will be able to get the help if they need it. And you're an example of how someone can live independently, even with some significant difficulties, if that kind of help is there. And I think the kind of thing you've described ought to be available to every American citizen.
Q I sure do agree with that. I've been listening to all these calls, and I'm telling you, I agree with what they're trying to do. And I just pray that this funding will keep on coming so we can keep getting this kind of help.
THE PRESIDENT: Thank you. Well, we're going to do our best, and thanks for talking to us today. You really made a great statement and we appreciate you.
Q It's been a real pleasure. I feel honored for you to call me.
THE PRESIDENT: Thank you. Well, the honor was ours today. Thanks.
Is Donna Lyttle there?
Q Yes, I'm here.
THE PRESIDENT: From South Ozone Park, New York?
Q? Yes, that's correct.
THE PRESIDENT: Thank you -- bye, Mary.
Donna, tell us a little about your situation. I think you care for your mother, who has Alzheimer's, and you work at Harlem Hospital. Is that right?
Q That's correct, Mr. President. My mother was diagnosed about seven, eight years ago with Alzheimer's. At the time she lived with my dad at home and I had my own apartment. As the disease began to progress, my father found it more difficult to handle her because of the behavioral problems that he was encountering; so I decided to move back home about four years ago and give my father some assistance.
During that whole time, he had cancer of the colon. Back in May, my dad had a brain tumor removed and was doing very well; and, unexpectedly, in October, he passed from cancer. So I now have the sole responsibility of taking care of my mother.
While I'm at work, I have a lady that comes in during the day to take care of my mother until I come home. Two days out of
the week, she goes to the Parker Jewish Geriatric Center -- which is an Alzheimer's respite center -- for about six hours, because that's all I can afford. And then when I come in, she's totally my responsibility in the evenings and on weekends. She's totally dependent. She can feed herself, but she needs help with everything; you kind of have to guide her along. She doesn't recognize me sometimes and she has no idea who my dad was when I show her pictures of him. It's pretty tough, and I don't see any light at the end of the tunnel because all of the expenses are coming out of pocket for her.
THE PRESIDENT: So you have a lot of personal expenses that you just have to pay for to keep her there?
Q Yes, because the transportation back and forth to the center is a cab service that I pay for for her to go twice a week. And you have to pay for her to be taken and to be picked up.
THE PRESIDENT: Anything else?
Q Well, all of the -- I'm paying for the home attendants to come in to take care of my mother and any other expenses that she needs are definitely coming out of pocket. Her medical expenses are definitely coming out of pocket also. But it's only through the Alzheimer's Association that I found out about the respite center. They've really been a godsend for me.
THE PRESIDENT: And how much do they come in and help you? Because, otherwise, you just put your life on hold, I guess.
Q Yes, well, my life is completely on hold. The Alzheimer's Association has been a resource for me in terms of finding channels that I can find need for assistance. It was through them that I found the lady that takes care of my mother during the day and about the daycare center for her. But they are --
THE PRESIDENT: But you're paying for that.
Q Yes, I'm paying for all of it.
THE PRESIDENT: Well, under our program, you'd have access to this kind of respite care and you'd have a chance to at least have more of a life while keeping your mother; and the government would provide some help based on your income. I just think that we have so many people -- you've heard these other people's stories -- we have so many people out here in this country who are doing their best to take care of their family members with Alzheimer's. And I think it's -- clearly, with the fastest growing group of Americans being people over 80, the number of problems that elderly people have is just going to explode in this country. And we, I don't think, can afford to have everybody institutionalized; and when people want to support their families and keep them together, I think we ought to be providing some help for it.
Q Yes, I agree. It's also pretty frightening for me because I have two additional family members that have Alzheimer's. My mother's sister was diagnosed in Barbados with Alzheimer's, but she has been placed in a nursing home. And my mother's uncle just passed in March after being home for, I believe, it's been about 15 years with his wife taking care of him and paying out-of-pocket expenses for all of his care.
THE PRESIDENT: And you're a nurse at Harlem hospital?
Q No, I'm executive assistant.
THE PRESIDENT: Is that where you work there?
Q Yes, I work at Harlem hospital.
THE PRESIDENT: I've been there.
Q Oh, yes, I've seen the picture.
THE PRESIDENT: I enjoyed my trip there.
Q Oh, I hope you come back.
THE PRESIDENT: If we pass this health care plan, we're also going to make your life simpler there -- less paperwork, more care.
Q That's great.
THE PRESIDENT: Thank you, very much.
Q You're quite welcome.
THE PRESIDENT: Vera Teske, from Wheaton, Kansas, are you there?
Q Yes, I'm here, Mr. President.
THE PRESIDENT: And you care for your husband, and I think he has Alzheimer's also.
Q That's right.
THE PRESIDENT: And you live on your family farm?
Q Yes, we do.
THE PRESIDENT: Tell us a little about your situation.
Q I'm 65 years old and my husband, Melvin, is 69. And he was diagnosed with Alzheimer's in 1986 at the age of 61. He requires 24-hour-a-day attention for the last 5 years. And if I had not been able to stay home with him, he would have had to be in a care home during that time. Melvin can do nothing for himself without supervision. He will eat anything and everything, so I must watch him carefully to see what he puts in his mouth. His sleeping habits are erratic, and he sometimes wanders the house at night. He is incontinent, although medication helps.
It is becoming very difficult to take him anywhere with me, so when I need to go somewhere someone needs to stay with him. It must be a family member because we feel that we cannot ask our friends to take the risk of violence that is always present. He went through a stage where he was fairly content, but now is becoming more difficult. His medication is at the highest possible dosage in order to prevent him from being violent. The doctors warned us that we can't increase it anymore and still keep him at home.
What is needed here is help available who would be skilled caring for those who are incapable of caring for themselves and who have an illness that causes them to be violent. This help would have to realize the liability they are taking, be skilled in handling a potentially dangerous situation, and be able to come to the home as this agitates the patient less. It would have to be affordable.
With any long-term illness, the expenses are so high that the care-giver feels she cannot afford to pay someone to stay with the patient. So, consequently, she never gets out of the house. I cannot emphasize enough how serious and detrimental this is to the care-giver. Too often, the care-giver becomes a patient herself
because she has had too big a burden with no relief. The long-term health care in your health care plan must help with this kind of need with people living longer, and Alzheimer's and related illnesses becoming more prevalent, there will be more and more people with similar needs and these needs must be addressed.
THE PRESIDENT: I appreciate your statement. I don't think I can add much to it except to point out that it's an even bigger issue for people like you -- a farm family in a rural area. We have really worked hard in designing this approach to make sure we're taking care of providing care in rural areas as well as more urban ones. Because you've made a statement about why we needed it as eloquently as anyone could.
I think -- I'd just like to emphasize one more time --at time in America when we're so worried about our young people and we say we've got to rebuild the American family and strengthen the American family, you've got all these dedicated family members who are out there who could have walked away from their family members and didn't. And it seems to me that given the fact that we're going to have more of these kind of problems as we all live longer, that we ought to be out here supporting family members and helping them to succeed and have a life, not have to give up their whole life, while they take care of the folks that they love. I really respect what you've done and we're going to do our best to provide some help in this health care plan.
Q I appreciate my family members. They help a lot.
THE PRESIDENT: Yes, I know you've got kids and grandkids, and that must help some. But it's still -- if you're out on the farm, you need somebody to come in and give you some consistent help, too.
And you made a great statement. I wish you'd been giving it to a congressional committee. It was terrific. Send us a copy of it, will you? We took a copy of it -- I'm going to send it up to the Hill. It's great.
Q Thank you.
THE PRESIDENT: Is Marge Garrison there from Houston?
Q I'm here, Mr. President.
THE PRESIDENT: You and your husband, I think, are caring for your daughter. Is that right?
Q Yes, we are.
THE PRESIDENT: Why don't you tell us a little about that.
Q This is exciting to do this, Mr. President. And I think our situation is a little different from the other people who have spoken this morning. Jennie is 21 years old, and she has mental retardation severe. She has autism, which further complicates the situation. And Jennie is nonverbal. It was suggested many years ago when Jennie was about three years old that she be placed in a state institution. And this was not a reality for us at all. We agreed that this would not happen. So we have kept Jennie at home all these years. And the struggles have been many. It's been very difficult to raise two other children and to take care of Jennie's needs at the same time. We've had a lot of financial difficulties. We've had a lot of emotional, physical only recently. I've had some problems with my back, which has made it very difficult to take care of Jennie, because with her functioning level, she needs a lot of help just with daily living skills -- with bathing, shampooing, getting
dressed and those kinds of things. And it takes a lot of support from our entire family.
Our other two children have now finished school and they're on their own. So they're not here to help us. And it's just my husband and I. We're both in our 50s, Mr. President, and both have had a lot of health concerns recently. So it starts to be scary when you know that you have a child who is dependent, as Jennie is. I here other people have said that they can't leave the house. We almost literally cannot leave the room and leave Jennie alone. She demands constant care, which makes it very difficult for my husband and I both. We have been able to hold things together. I think God has given us a lot of blessings. The divorce rate amongst parents of children with disabilities is very high. And we've been able to work together to be able to keep Jennie at home. But we would like to have some support to be able to do that. If we could have some caretakers come in and help with Jennie or some kind of respite, it would help us greatly.
We had recently applied for a home and community-based service program. It was probably a couple of years ago. And I have found recently that Jennie is still quite far down on this list, Mr. President. So you can see that there is a great need for families of children with disabilities to have some kind of help. We would like to see something besides the all-or-nothing program where you either place your child in a state institution or you keep them at home and you have the complete care yourself. So we have been hoping to see that part of your plan put into practice and families be able to get some help. It's pretty frustrating when you look at the waiting list and see that it is so long.
We've had to do on one income. I am a teacher and love to teach, and I've tried it a couple times since Jennie was born. But it's very stressful. The last time I had to give up my teaching position because I could not find a caretaker to take care of my child after school.
The care also is very expensive. So we have had numerous -- I won't itemize all of those -- but we've had a lot of financial expenses with Jennie. So that has made things more difficult, too.
My husband and I both have worked very hard; and someone there at the White House said, Ms. Garrison, I can hear you apologizing that you need help. And I guess with my east Texas upbringing, I tend to do that. But we do need some help, Mr. President. It's very difficult. My husband has had a heart attack. I have back problems and have extremely high blood pressure. Like I say, Jennie is not only mentally retarded, but the autism makes life much more complex, too.
THE PRESIDENT: Well, I appreciate your just sharing your circumstances with us. And I appreciate the fact you've kept your child. And what you've done, I know it's been an enormous burden. You shouldn't feel bad about saying you need help. And we shouldn't have an all-or-nothing situation. I mean, it seems to me that the people this country ought to be rewarding are people that are willing to take this level of responsibility -- willing to pay something according to their ability to pay, but just shouldn't be asked to bankrupt themselves on the one hand, or on the other hand just give up their entire lives. I really, really appreciate what you said. And more importantly, I appreciate what you've done.
Q It may be difficult for you -- you need to come spend a couple days in our home, Mr. President, and you can really see what it's like living in the house with the type disabilities that our child has.
THE PRESIDENT: I wish I could.
Q I wish you could, too. Thanks for having us today.
THE PRESIDENT: Thank you. I want to thank all of you -- Eve and Beth and James and Goldia and Gene and Mary Hammer and Donna Lyttle and Vera Teske, and you, Marge. I thank you all. In a lot of ways you're truly heroic people because you've lived by your values of hard work and commitment to your families. And I hope that your stories as they go out across the country will help us to pass a health care reform bill that will build on a lot of the good services you talked about today, those of you who have them; but make sure there aren't the waiting lists that Marge talked about; and make sure that we can actually give some help to people who are trying to help themselves and their loved ones.
We can begin to do this. It will take some time to get it exactly right in America, but we've got to begin now. And that's what our plan does. And you have inspired me to keep fighting for it. I'll guarantee you, this has been a wonderful day. I thank you very much. I wish you well. And we're all in your debt.
Thank you, and goodbye.
Q Thank you.
END11:19 A.M. EST