Advocacy for Children with Special Health Care Needs
Originally broadcast July 28, 2000
Welcome to our webcast on Advocating For Your Child With Special Health Care Needs. This is another webcast in the series from the University of Illinois Chicago School of Public Health Center For The Advancement Of Distance Education project on Quality Community Managed Care for Children With Special Health Care needs.
I'm Faye Eldar and I'm your moderator today. I'm happy that you're with us and we have two of the shining stars of advocacy in the state of Illinois with us today to share their expertise. I'm really looking forward to this discussion and from learning from RoseAnn Slaght and Margaret Mathes. Rose lives in South Belloit in northern Illinois and I'm going to ask her to introduce herself. She's a parent of two young men with special health care needs. She has four children and Peg is a retired employee from our Title Five program in Illinois of the Division of Specialized Care for Children. I met her a long time ago and I've always looked up to her advocacy skills and dedication to families and I will let each one of our participants introduce themselves and tell us a little bit about their background and how they got involved with advocacy and maybe even how each of us have met. Peg, would you like to go first please?
A. Of course. Thank you so much, Faye. I'm a nurse and I have been a nurse for about 45 some years plus and I started my career in working with children. then I went on to have children and grandchildren and wound up my career in working with children for which I am very very grateful. I've been very fortunate. And I met Faye through mutual clients of a young woman who had a child who had very special needs. And this client lived in one of the housing projects in the city of Chicago with her parents, and she was extremely young, very fragile and very intimidated by the system, by her family and just by life itself. And the last time I talked with her, I was just amazed at what a growth had achieved in her happenstance. She's just, she's really just matured in so very many ways and she has done so much for this daughter of hers. She's come a very long way.
Q And Rose?
A. Hi, I'm delighted to be with you today. I'm the Mom of four children. Two of them have disabilities and two do not. My oldest son, Donnie, is 22 and Donnie is deaf-blind. He has seizure disorder and some very challenging cognitive issues. The next son that I have is 21 and Paul just graduated from high school. He is deaf and has developmental delays. Then I have two typically developing daughters who are just as challenging as my sons are. Currently, I work with a grant project in the state of Illinois that supports parents and professionals to get training and technical assistance and to do a better job for families of kids with disabilities. And I also work for the state of Wisconsin at the Center for Blind and Visual Impairments. And I work I work as a direct service provider with kids who are there for the school.
Q. Well thank you both very much. One of the first questions we'd like our participants to address is exactly what is advocacy and what does it mean to you? Peg?
A. Advocacy to me means to do the very very best you can and achieving whatever is the best for your child, particularly in this instance of working with children with special needs.There's a big difference between advocacy and being assertive and advocacy in being aggressive. There's a big difference in being angry about your situation and eventually learning to accept your situation and moving on.
Q. And Rose, can you tell us about what advocacy means to you as a parent?
A. Advocacy means to me speaking for those who can't. And I don't mean just physically can't. I mean those who are unable to understand a system or maybe are still struggling to keep all the pieces together. And I think we see that in a lot of families as they begin the journey to the acceptance of their child's disability and learning more about it. And those parents especially have a need for someone to help them with their advocacy skills so they learn how to to do the right thing.
Q. Well said, Rose. Very well said. And I think we find out when we become parents of children with special needs that this is a new job that we have to take on to become an advocate for our children and to encounter all kinds of concerns and agencies and organizations that we had never thought about before and we didn't know we'd have to do this. You know we're really focusing on advocacy as related to health care and for our audience, let me explain that when we say children with special health care needs, this term means children with all disabilities and all chronic illnesses. So it's very broad. It does not just mean children who might have a specific medical condition and I know that this is a new term and that is something else we have had to learn about the new language for dealing with the system and the jargon. Now Rose, can you tell us about some advocacy experience you had starting out related to the health care system for your sons?
A. In the beginning for my son who is a biological child, the health care system was just daunting. I was a teenage parent. I didn't know very much about anything, certainly not about insurance or medical cards or any of those concerns. Finding providers who were willing to talk to me was a challenge and it still is because a lot of providers don't understand deaf-blindness which is happens to be my son's disability. And so that was always a very hard thing to do and maintaining a good relationship with those providers who often move on or often will not continue with your child as they grow older. For my other son, Paul, it was just a very hard thing to get him a medical card, even though he was a foster child. It took a lot of visits to the public aid office and back and forth just to get him what he needed.
Q. And what was most helpful to you in learning how to negotiate with them?
A. I think other parents were most helpful to me. They gave me tips and advice and sometimes it's not what you do when you're approaching the problem, but how you do it and how you talk to people And I think parents gave me the best advice as far as you know what questions to ask and when to be assertive and when to not be.
Q. How did you meet these parents, Rose?
A. Through like support groups, through opportunities such as going to conferences and workshops. I think that's where I met my best information givers.
Q. Well I certainly can agree with you as a parent. I always feel that I get my best information from other parents and also, of course, we've been fortunate you know to meet some professionals who are really knowledgeable and will share information. Peg, can you give us an example of working with the family on advocacy about a child's health care?
A. One of the biggest things that I advocate for with my families when I first become involved with them is to be sure to get a notebook, a large notebook with a pencil or a pen or whatever works for them and to write everything down. To include in that notebook a calendar, a large calendar, so that they can keep note on what they did on what date and their feelings as well, and to look back at this in a year's time and see what they've achieved. I understand how much Rose has gone through and I have not done it myself. It's it's the very beginning to find out what's wrong with your child absolutely. It takes often two people to hear what a physician is saying and to stop that physician and say you know I didn't understand what you said. Could you repeat it or I don't know what that word means. Could you help me? Particularly, in many cases when we need an interpreter available, it's it's tough to stop some of our professional people when they know the situation real well and they're rambling on very rapidly and you're sitting there and this is the first time you've heard some of these words and you have no idea what they mean or no idea what impact they'll have on your life and on your child's life. So those are a few of the things that I encourage families to do. To find someone that will go with them and to keep written records themselves and to also ask for reports as they go along.
Q. Well I think you've shared some really good pointers with us and also stressed some of the important issues of communication between families and medical providers and I'd like you to talk a little bit about how this is advocacy. A lot of people think that advocacy is something negative or they don't want to get involved in it or it has something to do with going to court, but really what you're explaining to us is advocacy is something basic about learning the ropes, being organized and keeping records and having a positive attitude trying to be on top of everything. Rose, could you tell us a little more about that and about why some people think advocacy is negative, but it's really a routine you have to build into your daily life?
A. Well I think just like you said. People get the idea that advocacy is a negative thing because usually when they meet someone who is acting as an advocate for someone else, it's in the situation like a school setting where it becomes the advocate is standing with the parent to do the right thing to follow the law and etc and maybe other people haven't seen it that way. The advocate often says things and does things with the parent that the parent may not be that comfortable in saying or doing themselves. And so people maybe take that as a threat when when in fact they shouldn't. Advocacy is is like I said before is speaking for those who can't. But advocacy is just doing the right thing and I don't know why that would be so scary for people.
Q. And what kinds of skills do you think parents need to develop in order to be good advocates?
A. Well I think parents need training and I think they need some guidance because it's very easy to become aggressive instead of assertive and I think that we need to teach people the difference and how to do things in a more positive kind of way where everybody wins. And usually when when advocacy hasn't worked, well it's because someone interprets it differently and they might get a little aggressive or they might get a little out of line, but a true advocate is somebody that knows how to be assertive and when to be assertive and I think that if we train parents and help them along on their road, because like you said earlier, it's a it's a learning process. You don't have all these skills when you first start out. Quite often you didn't anticipate having a child with disabilities so you certainly didn't take those classes in high school or college. So it's just part of the learning process and advocacy is a good thing; it's not a negative thing.
Q. Well thanks Rose and Peg, could you tell us about a specific example when you worked with a family about advocacy related to their health insurance for the child.
A. I had to explain what words meant like appeal and processing through an insurance person at work, explaining to the parents that it was necessary for them to go to their insurance person and then from that insurance person to go to the next person in line. The way of going up the steps of the ladder which is what we do with everything we do. To keep on working at it, it takes a lot of persistence. And it's not very easy for many of our families because many of the families that I was involved with had a specific job to do. Perhaps they were working in a factory or in a food staff area where they were very very busy and if they had ten minutes, they really didn't want to spend that ten minutes in trying to get to the insurance person at the place of employment. So they'd have to take off time from work. It was very very difficult for them and there were times when it was necessary for me to contact the insurance person and to work with them and eventually sort out the pieces. Sometimes it meant that it it took a visit to go to the place of employment. And again, when they find a professional or a mentor to help them with this type of thing because the language is very different in insurance work.
Q. I think you've touched on a number of important points and it can be really complicated. It can take a lot of time. You need to make a lot of phone calls and we know that lots of people in their work place cannot make or receive phone calls unless it's an emergency and it makes it even more complicated
A. Correct. I find that when you have a child that has special needs particularly, you have to make more phone calls than the norm. But irregardless, however many children you have, I think that you have to just be very persistent. You have to remain constant. You have to understand that you have expectations of these people whoever they are and and perhaps your expectations are not going to be met. But if you keep at it, eventually it will happen. It takes a while. I remember working with one particular person in a hospital setting and it was an insurance person and I explained to them that they had never given this family some of the information that they should have had about other services such as Social Security or Division of Specialized Care for Children. Eventually they did drop the charges for the child, but it took a year. And once both the people in the insurance office understood what was going on and the parents understood what was going on, the bills were resolved. But it did take a long time.
Q Well again from your vast experience, you've pointed out some really important things and I think all of us have had these experiences except we're not prepared for them.
A. Correct.
Q. When it happens to us and may not know what to do or where to go. Now Rose, could you tell us about some resources that exist that help families with advocacy and how people can find out about resources.
A. Well every state has the parent training and information centers which receive federal funding. In our state, I believe we have six of them and they're scattered around. There's one in Chicago and then there's a state-wide family ties group and they're accessible by 800 numbers. Most school districts also have that information about family support type of entities that are out there willing to help families. Also just in your own community. I mean finding a parent who's willing to listen to you and go to the PTA or PTO to conference with you when you do need to ask questions. I also encourage families if if you're not sure about things in schools, start attending school board meetings. I mean it really begins locally. You have local resources in your community and that's where you need to start. Because often, state-wide groups are wonderful but they concentrate on a very large area and maybe not specific to your needs and your area. Right now, we're having some issues with transportation for my son who's just transitioning out of high school and it's taking a lot of local people to help me put it together.
Q. Now Rose, I understand that you met with the mayor of your town last week. Could you tell us a little bit more about that?
A. Well this was part of the transportation issue and instead of the people that are suppose to provide the service weren't exactly seeing what I needed from them. So instead of having a problem with them, I decided well the the best way to handle the situation is to get involve those people that make the financial decisions about the transportation.
Q. Well thank you for sharing with that with us. I think it's important for us to know and get examples of ways people have been successful with advocacy and also to keep in mind that we need to start at the bottom not at the top to try to resolve things on the local level before going up the chain of appeal to higher and higher levels. Now I'd like to talk a little bit about any government programs that may help families with advocacy and the the names of the programs. We will have all this information posted on the resource section of our website for the reference of everyone who's listening to the webcast so you'll be able to find what is available in your state by going to our resource section, but I'm thinking about programs like protection of advocacy, centers for independent living, client assistance programs. What are these programs and who do they help? Peg?
A. I would suggest a social worker and whatever hospital they are receiving their services at, and ask what's available locally. And then start with the 1-800 numbers and figuring out what would be the best for them. But to take their time, not to hurry because sometimes we have parents that have ten agencies working with them and it gets very confusing. They don't quite know which which road to take. So my suggestion is always to to hear about all of this but to step back and look at what would be the best for you. And to do that again with one person that will help guide them on this on this very adventurous road.
Q And Rose, would you like to comment on this also?
A. I would say that every community has a service coordination entity and I think that a a very helpful place for families to start too. I know that I've used my service coordination agency a lot and I hadn't used them for quite a wile when my kids were in school because we had different issues, but now with transitioning into adult services, I've kind of been using them again. So find out who your service coordination agency in your area is. Also United Cerebral Palsy, The ARC. Alll those kind of supportive family and professional agencies have have different things going on in the community. Quite often, they'll sponsor parents to go get more training or make make it possible for them to attend a state-wide conference which is a really good thing for parents to do.
A. Very well said, Rose. And again to go back to something that you had said originally, you learn so much from other families. And to learn how to communicate, to allow people into your home which is a very private home but to let them know what you got to work with and then to go onward from there. It has to be done through general communication in this way and in workshops and in seminars. Many physicians do not know a lot of the services that are available. Parents have to learn to educate them and let them know what's going on so that they can in turn pass it on to the next set of parents.
Q. I hear the motive of what you are both saying is ask questions, be assertive, look around, have dreams, find out who can help you and I want to focus now on families who are just starting out who will need advocacy assistance. We will also have on our resource section a link to all of the Title Five programs in every state for children with special health care needs and they also have toll-free numbers in every state, a place where families can call up families. They really don't know where to go to get information and do not get from a doctor to start with their local public library, to call or ask the librarian are there any resources in the community for children with special needs and I always tell people when you call up someplace and they say they can't help you, ask if they can refer you to somebody else. I'd like both of you now to think about just when you're just starting out. How do you find out about things and how do you get linked up? I know it can get really complicated and I know Peg mentioned about the notebook. We all need to have those because we fill them up very fast.
A. Well I think in Illinois we've tried to set up a system that catches kids in early intervention years and early childhood and that's through our Child and Family Connections. Starnet is also a resource for families and professionals of children with disabilities, birth through eight. And we're a grant funded by the state board of education. We have an 800 number and we've done things like try to reach out to parents in different ways. We put together a parent resource listing of every family who wanted to be included in the state.
Q. And Peg, what advice do you have for the families who are just starting out and need to get the very basic information about advocacy?
A. I'm involved with a young couple right now who have just started beginning to understand that their child is autistic. They're slowly going through the acceptance phase. I have given them three phone numbers and I keep in contact with the three people whose phone numbers I've given them and they have not yet reached out and that's okay. I see this woman on a weekly basis and I'm very encouraging to her. She is still going through the diagnosis phase and I'm letting her walk the steps herself, but I'm there if she needs to if she needs information. I'm her information source. People are not going to just rush into something unless they're being pushed and sometimes that's just not the best way.
A. I would also add to that Faye that I think there's five things that that parents can do right away and the first thing is to have a positive attitude, cause I think a bad attitude is the worst disability that anyone can have. Very well said. So you have to have a positive attitude. You have to give yourself processing time and quite often you know we want people to rush. Just like Peg said, we want people to rush through things or speed it up a little, come on. But we have to give people processing time and parents have to give themselves time to process all this information. The third thing would be have a team mentality. You're a team player. You might be the captain of the team if you're the parent, but you're still one person on your team. The fourth thing would be creative thinking. Think outside the box. I mean sometimes things the easiest answer is just the most the least complicated. So be a creative thinker. And number five would be a problem solver because quite often we see a problem as that's the end when, in fact, it's just a temporary challenge. So you know look to solve problems, not to create more.
Q. Rose, this is wonderful advice. We are going to put this up on our resource section for Rose Slat's guidelines for Advocacy. This is really important and that sort of leads us into the next question that I have for you. Often when we think, advocacy people think oh you have to get a lawyer. Are lawyers needed? How do you know when they are needed and how do you go about dealing with this?
A. Lawyers are needed sometimes with due process and trying to get your child into an educational setting. . There are certainly particular people that are geared towards this and that are trained towards this. And there are people who will help the parent assess this this legal access and it's not a frightening happening, although many parents as soon as they hear lawyer, they do get frightened. But it's really not a frightening aspect. Some of the folks that I worked with needed a lawyer because of legal access to medical systems because of citizenship difficulties. And that also was done really very easily once they accepted the fact that it was okay to have a lawyer talk with them.
A. I would say litigation always kind of frightens me too as Peg had just said and I would only use litigation if all other means fail. And I would first go to mediation. But I think if you can't get anywhere through mediation, then sometimes you are forced to litigation. But I certainly as a parent never never ever wanted to go that route just for the plain and simple fact that it's very expensive and very stressful on a family who is already totally under stress if they're to that point.
Q. Correct.
A. And I can think back on some times when I have talked with families who said you know I want to get a lawyer to help me advocate for this service for my child and in talking to them I said have you talked to the teacher or have you talked directly to the doctor who made the decision and I was surprised to find out that in many cases they had never talked to the people who were involved in the direct daily care of the child or in you know in the the child's medical care that they saw in the office. They never told them that they were not happy with the decision for the treatment plan.
A. So it goes back to what Rose said with her five points of action. Have a positive action positive attitude. don't immediately negate what someone said and say oh I'm going to get a lawyer involved in this and give it some processing time and and think of it as a team you know think of again like I said have a few people listen to what's being said. Don't sometimes because we're perhaps a little bit nervous or a little bit naive or a little bit frightened, for whatever reason, we don't hear all the words that are being said. And problem solving can start at the bottom not at the top. Go at it slowly.
Q. Well thank you. This is something really important for all of us to remember every day and to reinforce. Another thing I want to ask about is types of advocacy assistance that have income eligibility requirements and how to work with that.
In my area we have a group of lawyers, Prairie State Legal, and they're suppose to help people with lower incomes you know advocate for their children legally. They are lawyers and there are a couple other entities in the state that receive money to help people with lower income levels with legal things.
Q. And while we're talking about income assistance, another thing that I remind people that there are the legal services agencies across the country to help low income people. There are other types of legal clinics sometimes at law schools. Sometimes when you explain the situation to an attorney, you will be able to get a discount or a payment schedule. I always advise people to apply and fill out the application for programs that have income eligibility. Even if they don't think they'll be eligible, they need to find out and sometimes if you're denied from one program, a social worker or social service agency may be available for to refer you to other charitable funds that could help you and nobody will take word of mouth anymore. Well I just can't afford to pay for it. They want you to apply and to see what exactly the financial situation is and advocacy organizations and parent organizations can share information about more and more resources. It's sort of like a chain I guess.
A. And you do that by going to the very first place that somebody tells you to go to or to call them. As you said in the very beginning Faye, who who can you refer me to? If you cannot help me, who can you refer me to? And if Northwestern has a full load, they may refer you to us Kent School of Law. They may refer you to Loyola. All three of those law schools I know have have assistance. But you may have to fill out a few forms. And it may take a little time
Q. Now one more part of advocacy that we haven't talked about yet is self-advocacy and about parents teaching their children self-advocacy skills and I like to say this starts when our children are really little and we let them choose whether they want to drink apple juice or orange juice. I'd like to get your thoughts on self-advocacy.
I had a wonderful parent who now lives in Texas and every once in a while that young man still will call me. When he was in grammar school, his father started letting him take charge of when his appointments would be, what was going on in school that day and what would be a good day for the appointment. And he would ask him this when it came time to make the medical appointment for his next visit. And that boy eventually learned how to order his supplies, needed monthly supplies. He eventually learned how to order his own transportation and they had a very long talk about guardianship and about what type of education he should pursue after high school and he was like you said, apple and orange juice, this young man was involved with his care on a day by day learning process. This young man now works for a government resource in Texas and he lives on his own and he's probably about 26 years old and doing well. He has a wonderful life
A. Oh that's wonderful. The family recognized his need and started really early.
A. Yes. And the simple things were built on them.
A.Yes. And I would agree with Peg that it's all about choices, and you too Faye, I mean we have to start out with the simple choices giving people a say in their life and their future and then recognizing that communication and respecting it. And it's hard, especially when we know that children make mistakes and children don't always choose the correct choice but I think that that respecting those choices and giving choices is key to helping somebody become their own best advocate as they grow older. A lot of family groups are now including young adults in decision-making and I think we need to encourage family groups to let more young people with disabilities have a say in how their organization is run.
Q. Well it's almost time for us to finish the webcast. Now do you either of you have some closing comments and thoughts about the advocacy topic for families who have children with special health care needs? I know you both have so much knowledge and we could probably talk for three hours about all of your experiences.
A. And I would say that families advocacy is a good thing. Families need the support. The support doesn't change. Especially as your kids grow older you think things get easier and they don't. You're always proving that your kids have a disability. that's to insurance, to Social Security, to any service provider out there and that doesn't change. You're always justifying needed services and it's not that we're asking for extra dessert. And I think a lot of people think you know because you have a child with a disability, you want something extra. Look we just want what you have automatically.
Q. Well said Rose
A And we're always looking for funding for needed personnel and trying to find time to train people. So this is why families need advocacy. Because a lot of other families whose kids are typically developing don't have those same issues. And they're not out seeking funding or finding trained personnel and justifying their need for services so this is why we need advocacy.
A. Absolutely and also letting parents know that there are funds available. It's not easy to access. But much of it is attainable by parents like yourself who are willing to go to Springfield to go to the representatives that will help us attain more funding for the needs.Those are the realities and so we need to keep on helping people go forth go for that last dollar.
Well I think you have both done an excellent job of summarizing our advocacy topic and pointed out the progress that has been made in the past 25 30 50 years through advocacy efforts of concerned families and concerned professionals and community members working together in all areas of life for people with disabilities and special needs; creating services where none existed before and looking to the future for unmet needs. Advocacy is part of our lives. We need to know we are not alone. There are many people out there willing to be our partners and we need to move ahead and again I want to thank very much our advocacy experts Rose Slaght and Peg Mathes for sharing their expertise and wisdom with us today
This concludes our webcast in the ongoing KMCO series on managed care and children with special health care needs. Thank you for logging on to our webcast. We're really interested in your comments and questions regarding the webcast and we invite you to contact us. Please look at the screen for our contact information or call us at area code 312-996-2233. We hope you've enjoyed this broadcast and you'll join us for our upcoming webcast broadcast. The first shows come up the fourth Wednesday of each month at 1:30 p.m. central time and then each of the shows are archived so you can listen to them at your convenience.
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