SW 644: ISSUES IN DEVELOPMENTAL DISABILITIES
FAMILY SUPPORT PROGRAM
Beverly Doherty, M.S.S.W.
Unit 1
(Slide 1) SW 644: Issues in Developmental Disabilities
(Slide 2) Two Family Stories
(Slide 3) Video
( Linda Brown) Well, we've lived in Wisconsin for a little over sixteen years. We're originally from the east coast, my husband and I. Let's see, there's Ben, my husband, is a rehab engineer. He has just recently started a new job. It is pretty exciting, but it is a lot of work. There's Adam, who is sixteen and is a junior at East high school and looking at all kinds of colleges and scholarships. Then there is Aaron, who was the only one of us who was born in Wisconsin, and he was born in the neonatal intensive care unit, and me.
(Linda Rowley) I get a lot of help caring for Mitch from my parents. They help take care of him so I can have a break now and then. But basically our family is right here. The two of us. He was born in a small hospital in southwest Wisconsin and they knew right away that he was going to need some special care. So, from the delivery room, the neonatal ambulance was called and they came come down and got him. He had his first surgery before he was 24 hours old. He had about eight hours of surgery to repair his spine, and then he has 18 more since then.
(Linda Brown) Well, Aaron, as I mentioned before, was born in the neonatal intensive care unit, 13 years ago, January 11th. At the time, he was three months premature and ended up being in the hospital for 3 months. But when we brought him home, we didn't know he had any special needs. So, we went along until he was about nine months of age, and then found out he had multiple needs. At that time, he did not have a tracheostomy tube and he did not have a gastrostomy tube for eating. We knew he had cerebral palsy, that was the first diagnosis. I didn't know what that meant. It kind of plummeted us, especially me, into a lot of despair and what did I do to cause this? What am I going to do as a parent? Because my other son was like a typical birth And I just didn't know what the future would bring. We did not have any resources, because every time I would get referred I would say, this is really getting hard and we have a lot of stress and a lot of bills. I wasn't working and people would say you make too much money. You're middle class. We struggled along like that for about 3 years, and during that time Aaron developed a lot of medical problems. (She says to Aaron, If I'm talking about you too personal, just yell, OK?)
At first he ended up having to have a gastrostomy tube for feeding because he wasn't eating very well and losing a lot of weight and he was 2 at that time. We were just desperate. We knew he had a lot of needs, but we didn't have the money, and no insurance to cover it, and so I went back to work. He got sick, so I had to quit the job after a month and a half.
(Linda Rowley) He spent a lot of time in a hospital. The first three years of his life were mostly in the hospital or just trying to stay healthy. He had a lot to make up for as far as development after he reached three. He didn't start talking until he was four and then all of a sudden, he took off. So he went from being pretty much non-verbal to being described as hyper-verbal.
(Mark) You like to talk much?
(Mitch) hm, hmm.
(Mark) Do you remember being in the hospital and all those surgeries, and talking with all those doctors?
(Mitch) no.
(Mark) That was a long time ago.
(Linda) What about last year when you were in the hospital. What happened when I went to Washington?
(Mitch) I broke my leg.
(Mark) How did that happen?
(Linda) A pathological fracture. So, you had to go the hospital, mommy flew home, I caught the first flight I could get. I got home just an hour before you were operated on, right?
(Mitch) Right.
(Linda) He was in a cast for over a month, and then the skin over the spine broke down from the cast, so he was in a prone position for about three months. We had him in a reclining chair and he was just great. He was very tolerant about the whole thing.
(Linda Brown) At the end of a period of time of about nine months where he was rushed to the hospital about nine times, they said at the hospital that he needed a tracheotomy tube and I didn't know what that meant. But I said if that was what he needed to live, then that was what we would do. I was trying to figure out what I was going to do, and what our family was going to do in the hospital, when the person that was then the director of the Family Support program in DaneCounty called me and said, you need family support. I respected her a great deal. And I said, oh no, we make too much money. She said, no your life is not normal. And I said, no its not, but I am really tired of people turning me down. They keep telling me that it is because it is somehow my fault or my problem. But she insisted that we get on family support, and I am really glad she did. I am glad I listened. The first thing we did was find somebody to help take care of Aaron and as a family it was what we needed the most, to kind of step back and regroup and figure out how we were going to stay together and support each other and for each of us to have needs met without being totally engulfed in disability and special needs and health problems. So I realized what a great relief it was to finally get help after feeling so proud that I couldn't ask for it. The Family Support program was the program that came along and was there saying this is a tough job and acknowledged that and families know what they need and whatever it takes, that is what the program is going to do.
(Linda Rowley) When Mitch was just a baby, Family Support started. That was about ten years ago, this is the tenth anniversary, so about a year before Mitch was born. The D.D. coordinator in Lafayette county where we lived was going to apply for the grant and she called together a group of parents to help write the grant with her. So that is how I first found out about it. When she described what the program was to be, it was amazing to me that the service system was going to give us money to spend how we needed it. That was just incredible to me. I couldn't even imagine it, because I was used to dealing with programs that were set up in a way that may or may not work for my family and for our situation. And usually they didn't work very well. We had to change and accommodate ourselves to the service system. This was a program that was going to accommodate itself to us and to our needs.
(Linda Brown) By the time I was done describing my day I was tired. And I was living it every day. What kinds of things would make your life easier? I guess so many people had said no, you make too much money or no, you don't need this, even though you kind of feel like you do, that it was very difficult for me at first to say, what my needs were. I really had a tough time with that. I guess it is that work ethic thing. You are not supposed to be needy, you're supposed to be self sufficient, you're supposed to do it yourself. And I think I am a self sufficient, go-getter kind of person. But, you know, this is a program that, no matter how much of a go-getter and how self sufficient, it is a big job. There are a lot of aspects that you just don't have any idea. I didn't know what speech therapy meant, occupational therapy, I had never heard of it. My husband had, but see, it is one thing to hear your husband talking about it and it is another thing to say, this is what your child needs. So then you have to learn about it. So when you start saying, he needs this and this and this, almost any family I know, no matter how wealthy you are, would have a very hard time being able to afford that. So it is a matter of when there is a child who has that many needs or multiple needs, and they're very significant, I think no family is really in the position to say, I can do this hands down. I guess maybe an exception might be if you have a law suit. You still have to know what the services are that you need for your child too.
(Linda Rowley) One of the big things I can remember that I was excited about was that they helped me pay for diapers. That was just a really important thing. The first thing we actually got when the Family Support grant finally came through was a computer for Mitch. That was still when he was non-verbal. So we got a computer and some software that he started using. Then when I went back to school, back to college, some of the things that helped us out during that period were... well one thing they paid for was a pager so that if the school had problems, if he had problems during the day, they could reach me anywhere on campus because it is almost impossible to track someone down.
(Linda Brown) I think the first thing that we got that I can remember was nursing care. The person who was the Family Support coordinator knew a person she played softball with who was a nurse and she had her come in and meet Aaron. She knew that once she came and met Aaron that she wouldn't mind taking care of him. When you say a child had a trach, you say, wait, I don't want to be involved, its an airway. But she came, and we started getting breaks and taking Adam. I think that was a critical thing, I don't even know what Adam did for those two years from Aaron's early on until he was about three, I don't remember. I am sure Adam must have felt what in the world is going on in our family. Aaron was sick all the time and Adam would ask questions like, is he going to die? I didn't know if he was or not. So that kind of stress was incredible on our family and on Aaron. It was really hard on his physical being and his well-being. So we had a nurse.
And the other thing that I remember, because he fussed a lot, I was so tired after getting up 2 to 3 times a night to get a pan of water, I was afraid I would forget whether I had left the pan of water on or if it would boil over and cause a fire, so I asked for a microwave. And I asked for a cordless phone. And those were three things that I remember were important. I remember that the Family Support coordinator said, I think that we can get community options to cover that. And the woman said, I don't think that sounds necessary, so I said, just take this scenario and I described how it was when Aaron was not breathing and I was trying to get him breathing in the morning and I was trying to call 9-1-1. At that time you didn't. You just called the emergency room or the long number, not just 9-1-1. And so I am with my child and trying to get him to breathe that you have a phone cord wrapping all around the equipment. I think once she heard the description of what it was like, then the cordless phone... The other thing that family support coordinator did advocate by saying, don't give this family any grief. I know they need a cordless phone. So that was real important; having someone in the system who believed you, who didn't think you're a taker, who didn't think you are making this up. You don't make stuff like this up, and I think that was saying yes, this is my life. I think we all had a chance to really look at our life and see that it is complicated. We wanted to be as normal as possible, and we wanted to be a part of the community.
I think that was the beginning of saying we can be a part of the community and we can have Aaron and everyone else together. I had no desire to put him in an institution, and at times I did early on when we didn't have nay support, I really considered it. But I just couldn't do it. I kept thinking why is this OK? It doesn't seem OK. So, family support came along at a time when I think a lot of families were saying, we don't want to put our kids in an institution. We just want some help. If you can put a child over here and get all the help you need, over there, then why can't you just a little help over here with us, and we can do a better job because we know him and we don't want to do this other thing. So I think that is what the family support program came along and did. And it was very different because it didn't have requirements saying we are actively seeking out of home placement. It just said, here you are, you're a family, you have a child with extreme special needs, now, what could make your life easier? And there were no judgements. And you held each person as an individual, respected and not compared to the person over here. I think its changed in that regard in some areas. I think because of lack of funding for the family support program now, the competition for funding, is that counties sometimes will say well that little boy over there or that little girl over there needs more than that family over here. I think that is an element of the program I am sad to see being jeopardized. I think that it is important not to compare families. You can't. Every family is an individual. Every child and person within that family is an individual. And I think that is where the family support program started and I hope we always can hold on to that ideal.
(Linda Rowley) I think the thing that is really great about the Family Support program is that it really, when it is done right, respects us as individuals and where we come from and what our needs are. It supports us in a way that we design we need, so whatever our needs are, it is really variable. Whatever it is, whether it is recreational equipment or paying for certain services, like a car or a pager, or an air conditioner for a child that may have problems cooling themselves down, paying for doctor's bills that aren't covered, or even paying for phone calls to call the doctor. I guess I have heard different professional talk about parents who go through what they call the screening process. If a parent is really angry at a professional, they'll go well, they're in the second stage of grieving. That is just to be expected. I guess I really don't buy into that. I don't think that is really an accurate representation of why a parent is angry. A lot of the anger comes from living in a society that doesn't welcome people who have disabilities, doesn't welcome children who have disabilities. There is a service system that is not set up to deal with our needs. We have to conform to what it says, and often, for us, it doesn't make sense. Many of the programs end up costing more money. We often know a better way to do things, but no one ever listens to parents. At least until the family support program came along. To me, that is one of the greatest things about it. It's there for you. As your child grows, and as you and your family grow and change, and as your needs change, the program can change. So that if you write a service program in January for what you need and something happens, its not written in stone. You can go back and change it.
(Mark McManus) What dreams or hopes have been able to realize because of the family support program?
(Linda Brown) Probably just about everything. I don't think I would have ever thought about the involvement I have in the community and the legislative process, about understanding that you can make a difference. Advocating for other families to try to get enough money for the program so that we don't have to be fighting families against families to get it.
(Mark) Your mom said you are in second grade?
(Mitch) Yes, that's right
(Mark) What is second grade like?
(Mitch) Hmm, like....
(Mark) What kinds of things do you do at school?
(Mitch) Well, that's a toughy one...
(Linda) Well, talk about your day. Do you got for recess?
(Mitch) Yes.
(Linda) Recess is fun?
(Mitch) Right.
(Linda) What about art and music and gym? Can you talk about those classes?
(Mitch) Well, in music we just sing, in art class we do art things and in computers we just type stuff. And in gym this year we are playing basketball.
(Linda Rowley) But I have also been able to get things for Mitch, the assistive technology that I wouldn't be able to get on my own. I would have a real hard time.