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Healthcare Transition in the Era of Managed Care

October 25,2000

Hello and Welcome to our webcast from the Quality Community Managed Care project from the University of Illinois at Chicago School of Public Health. I'm Faye Eldar, your moderator. I'm the family coordinator at the Quality Community Managed Care project, and I'm happy to be with you today. We have another web cast in our ongoing series in the Kids And Managed Care web site. Our show today is about young adult transitions in health care. It is a very important topic and we have two experts to share their information with us today. One of them is Lou Terranova. He is Program Service Manager for the Division of Specialized Care for Children (DSCC)in northern Illinois and Rockford. That's an Illinois Title V Children With Special Health Care Needs agency and he comes to the DSCC with a background in health care administration. Our parent speaker today is Jane Gaulke. She is the parent of a young adult who has gone through transition, and she lives in MacHenry County in northern Illinois. I'd like to ask each one of you to introduce yourself and tell us a little bit about yourself and your background and transition experience. Lou, could you go first please?

A.Okay thank you, Faye. As you mentioned, I'm with the Children With Special Health Care Needs program for the state of Illinois here in the northern Illinois regional office. And one of our projects for this office was too look at transition issues for children with special health care needs as they go from pediatric center care to adult level care or as they age from age 18 to age 21, at which time at age 21, they are no longer eligible for the program here in Illinois. So we have been working on for over the past year close to two years now and identifying transition issues that families face and so we can assist them as we develop a plan to transition the child you know through adolescence to adult medical services. We've developed some informational material and it's a learning process. Not to say that we have the set answers or pat answers, but because it's unique to each family and each child and whatever resources are available in the family's home community.

Q.Well Lou, thank you very much for explaining about transition. We're going to be getting back to you in a few minutes to give us some more detail about this really important topic. Jane, could you please tell us a little bit about your family, where you live, and about the transition of your son. I believe he's 21 years old now is that right?

A. Yes he is, Faye. I'm a Mom of a disabled child and Tim was diagnosed when he was about four years old. He has a degenerative disease of the white matter of the brain, which is a genetic disability and I really don't have any definite solutions or what's going to happen to Tim in the future. Tim just turned 21 this year. He's been in school and then this year, this is the first year that he'll be out of school. And our transition went pretty well. But Tim is able to speak vocally and he is gives input into what he wants for his future and so it hasn't been that difficult. The difficult part is that I haven't found a lot of programs as of yet to get him outside of the home, because I want him to still have a social life. So that's one of the problems that concerns me right at the moment.

Q. And what has he been doing since he graduated?

A. Well fortunately, we've been pretty busy. We've had a pretty busy summer and he helps me out in the garden and I do have aids that come in. I have help from DORS Department of Human Resources. They provide me with a set amount of hours a week that I can hire people to come in and help me. They help me feed him and dress him and they keep him entertained and stimulated. We do reading with him and he just got an electric chair, so he's been busy practicing on that.

Q. Well that's wonderful. Thank you so much for sharing that with us. Now Lou, could you tell us about some of the special transition concerns that are related to health insurance for young adults who have special needs?

A. Depending on the child's needs you know and the type of insurance plan or coverage available through the plan, some concerns or some issues are requirements that how long can the child remain on the plan? For example, some insurance plans stipulate that the child has to be a student, a full-time student in order to be eligible for benefits past the age of 21 to be covered on the families plan. Some children with special health care needs are not able to continue you know with schooling. So that's one issue.

Another issue is what we call the transitioning from pediatric to adults level care and in some plans or some providers even where that occurs or when that occurs has been an issue. For example, when does the child stop seeing the pediatric specialist and now see an adult specialist? And is the adult specialist willing to take on the case? So those are some issues that families face in working with insurance plans.

Q. Okay now Jane, could you tell us first of all your experience? Was your son able to stay on your health insurance or not?

A. Yes he was. My husband works at the Community College and their insurance company provides for him as a dependent and he does not have to be in school full time. So we're very fortunate in that because I know a lot of insurance companies will not do that unless they are a student. So that has not been a problem. Some of the other problems we have faced is I was looking for special equipment for Timothy and my insurance company was giving me a hard time. They didn't feel that he needed some of this equipment until I received a call one day from my insurance advocate. And I didn't realize at the time that I even had one. But if you look in the front of your insurance book that tells you what your benefits are, she's a registered nurse and she's an advocate for me to work with my insurance company. And she read the letters from my doctors and decided that he qualified for this equipment. So she was a tremendous help. She took a lot of the pressure away, a lot of the paperwork. She took a lot of the hastle away and just it just relieved me so much because Timothy was getting pressure point sores when he was laying in bed. And so she arranged for a new mattress. It just was a great great relief to have her help me and I didn't even know she existed.

Q. And I'm sure that most people don't. You were really fortunate to find this kind of help. Could you tell us if the advocate is an employee of the insurance company or does that come from the place of work? How does that work?

A Well as far as I know, she works for she's hired, the insurance company hires a company that she works for, and they help, because the people in the office aren't really qualified to deal with some of these children that have you know great needs.

Q. Well that's great. Now in terms of switching from pediatric to adult doctors, has Timothy done that? Yes and his Timothy was associated with Shriners for 17 years. But when they turn 21, they're considered adults and so they don't accept them anymore. But Dr. Smith, who was Timothy's orthopedic doctor, gave me some names of other referrals of doctors and he also told me that if I had a question, I could still make come in and talk to him and have a consultation with him. So I felt that he just wasn't abandoning us, you know he was still willing to help us through if Timothy had any you know orthopedic problems. So that wasanother big relief because Shriners has been with us for so long. It's like a big safety net. Then when you go into this 21-year-old age, you start losing them. Now Tim's pediatrician is also a family doctor. So Dr. Rayez has been with us since Timothy's been born, since he's been 21. I mean he will continue to see Timothy until he retires I presume. And you know he's just he knows Tim and Tim's history, so it's you know it's I don't have any problems with him at all.

Q. Well I'm really glad that that has worked out for you and for your family, Jane. And just an aside to our listeners, we're talking about young adults continuing on parents insurance. Illinois is not a state where that is regulated by law. In some states, that is required by a state law that if a disabled dependent is on the parents' insurance for employment, they're required to continue them. But we don't have a law like that in Illinois and each state has different laws. Now Lou, can you tell us about your experience with young adults staying on the parents' insurance from the families that you've worked with from over the years at DSCC. Is that pretty common or are there often difficulties?

A. I wouldn't say that it is common. It can be done. But the key is that the family has to be aware of what their plan's provisions include and don't wait until the child is 18 or 21 and then try to find out. A lot of things with transition, it's never too early to start because these issues are going to come up. So it's not at all, it can be done. I think in Jane's case, I think that's great that they continued the coverage for her son.

But families, need to be aware and begin planning the process. Jane brought up a good point and most insurance plans will have an advocate or what they call a case manager. In some cases, that person is not identified until a certain of level of costs are reached or for certain diagnoses. But most plans will have a case manager available upon request by the family. So the family should contact this person within the insurance plan to begin that planning process you know for transition and to see what benefits are available when the child turns age 21 if there is the possibility of continuation of coverage for certain conditions or under what certain circumstances.

Q. And at what age do you think families should start looking into this? In the schools, the transition is planning is required starting at age 14. But what about health care transition?

A. I would say by about age 16. And the reason for that is because at about that age, the there are several reasons. The the pediatrician who's involved with the child's care may curtail or may begin the process for transitioning to an adult care provider. Depending on the child's condition, they may feel more appropriate to be seen by an adult provider rather than than a pediatrician. And that's the key component too is to to look at the child the young adult. But they need to become more involved with decision making, particularly self care issues, and so at about that age, 14 to 16 ,you would start as part of the transition plan to involve the child in some decision making, in self care activities, and then talk to the pediatrician about an appropriate time to begin that referral process to an adult care provider.

A. I think that's really good advice, Lou, and I know I did follow that with my daughter who's now 19 and I told her as she got older, she would be losing, the doctors that she goes to. At appointments I had her ask the doctors until what age can I continue to see you. And some of them said until age 18 and some of them said until age 21 and she said she didn't want to change all the doctors all at once.

Tell us something else about young adults with disabilities. If they get jobs, do they usually get health insurance and does that cover the medical care that they need?

Q. Well studies that we've looked into as part of this project show that a great percentage, in fact, some studies put it at 60 percent of people with disabilities between age 16 and 64 are either unemployed or under-employed. Those that do are able to secure work, their average wage is about 25 percent less than a non-impaired individual. And so already there is that discrepancy. Again, depending on the individual's abilities will greatly determine the type of job that they're able to secure, including you know previous work experience, educational preparation and their skill level

Another factor that impacts on employability are people with chronic illnesses may experience frequent periods of illness. As a result, you know having unexpected time off of work or school. So that also impacts them. For those that do are able to find employment just like I think with the rest of the work force, you know it depends on what insurance plans are available through the employer. And and I think any worker, including those with a disability that have frequent health care needs, need to look very carefully at the level of benefits that are available through the the employer's health insurance plan.

So you would say first they need to find out if the job offers insurance. Second, find out if the insurance covers the things that they need and third, find out how much the insurance costs.

Q. Okay and what happens if a young adult cannot stay on the parents' insurance plan and they also cannot get insurance from a job? What's available to help them?

A.Through some state and federal type of programs, each state has the formerly called the Public Aid or Medicaid program that would be available. Each state's program varies, however. There is also the SSI program that is federally funded. That may be a resource. In Illinois, there is also the Office of Rehabilitation Services or ORS whose purpose is to assist individuals both educationally, vocationally, as well as develop employment skills so they would provide services to assist in those endeavors as well. Again, each state may vary into the type of program that is available.

Another fairly new program or actually it's a law, is the Work Incentives Improvement Act in which previously if a person received Medicaid benefits and they were able to to get a job, then their benefits through Medicaid would be discontinued. Now, however, as a result of this new law that was passed in 1999, those types of barriers have been removed so that there isn't that penalty for a person with a disability if they were to secure a job that that would not mean now that they would automatically lose any Medicaid benefits.

Q. Is the program that you're referring to the Medicaid Buy-in program?

A. Yes.

Q. Okay well I know that that's new. We're all very excited about that because this is a new opportunity for adults with disabilities because a lot of people had to choose between working and having health care. So this is helping a lot of people and I believe Illinois is currently working on a plan. Has it started yet, Lou?

A. I don't believe it's in effect yet in this state

Q. And where would you refer people who wanted to find out more about it?

A. They could contact, in Illinois, the SSI coalition. Oh yes. And I can give you that number which is area code 312-223-9600 for more information about this plan in Illinois.

Q. Well that's going to all of our listeners when this can you can switch to the resource section of the webcast when you're done listening and you will have more information and a link to the website if the SSI coalition as well as other information about new laws and programs related to transition service for young adults with disabilities. And Jane, have you heard about some of these new initiatives and new programs?

A. I have heard of a a couple of them. I haven't had very much success in in finding placement for Tim in work. I had ORS come out and they didn't feel that he was qualified to be trained to go out and work in the work force by himself. So it's been kind of a dilemma. So I guess unless Tim and I would take the initiative and find some kind of work at home on the computer or something that I feel that we could do ourselves and maybe market ourselves, I don't really see a lot of chances out there for him to achieve employment. So it's kind of disheartening. I don't think MacHenry County has offered a lot.

Q. I know transition is very difficult and very complicated for everybody, for the family, for the young adult and for the service providers. I understand that you he use to be in the DSCC program and you had a case manager who helped you find out about things like SSI. Could you tell us a little bit about that please?

A. My case worker manager was Lisa. And she was very helpful. She made phone calls for me, she kept me up to date as to what was going on, she helped us get the lift for the van that Timothy needed. My husband and I pretty much taken care of Tim by ourselves with his disability for the last 17 18 years until I had a health problem and my husband had a health problem and we decided that we had to change and we had to go out and look for help. And Lisa was just marvelous. I can't say enough about this agency. They really did help us a lot. And she also you know sent me information and so we worked together quite closely until Tim turned 21. Because he turned 21 and became an adult, that service ended. But when before that, it was really nice. It was really nice that I could call her up and talk to her and she really knew how to handle things.

Q.Well that's great. Now Lou, can you tell us a little bit more about how the DSCC consultants work with families on transition?

A. We try to work with the family in developing what vision do they have for their child when they turn or when they become an adult. And it is some difficult issues. For example, we we ask the family as uncomfortable as it is, where do you see your son or daughter when you're no longer available to help take care of them? Where is the child in terms of becoming independent to the extent possible for self care and to make decisions? Issues of guardianship in addition to the issue of securing medical care and payment for that medical care. We talked about the insurance issues and whether or not they can be continued on the plan. So we try to to approach and discuss those issues with the families. Again, there are no common solutions because it depends on on the family's resources, the needs of the child and the interests of the child as well. And so each plan, what we call a transition plan, will be unique to that particular child.

Q. And where do you and the members of your staff go to get your updates and training on transition issues?

A. Basically, we we've kind of learned as we've gone along and when you say where have we learned from, it's from the families themselves who have had to go through that. When we began this project, we were in contact with families who have become over-age for for our program and asked them what were your experiences? You know what work, what didn't? How do you see us helping families before their child turns age 21? That was very insightful. Again, I think the issue of transition while it's been around but it is fairly new in the sense that it hasn't really been addressed fully. And so it's still evolving. There are a number of projects throughout the country that are looking at transition issues. In particular, one is out in Washington state. So it's an evolving program or process I should say that really is a collaborative effort between families and agencies or programs such as DSCC.

Q. Well I know is complicated. I'm going through that with my daughter now who's 19 years old. I found out about resources from other parents but it's pretty difficult and I'm sure that Jane you would agree with that that transition is not easy compared to the other things you've had to do for your Timothy.

A. You know it is it has been very difficult. I think it just depends on the individual child and you know what their handicap is. I think that as a parent you have to be assertive. You have to know your doctors and I think you have to go in and question your doctors and make sure that you can work with this doctor and make sure that this doctor's going to be able to work with your child. I think that there's just it's a constant thing that's always changing. Nothing you know really stays the same all of the time. New problems arise. So I think if you take one step at a time and and go through the steps and talk to your friends and your neighbors and other people of parents with disabled children, it kind of takes a little bit of the burden off your shoulders and makes you see things a little bit clearly. So I think that that's what you have to do. You have to approach it from that kind of standpoint that maybe we'll learn something new today and that type of thing.

Q. Well I think that that's some really good advice. Now Lou mentioned guardianship. Can you explain to us a little bit more about what is guardianship and how do you find out about it and determine if you're it's necessary for your young adults?

A. Well in Illinois, legally when a person turns age 18, they're considered an adult and to that extent are able to make their own decisions. Now depending on the child's medical condition, that may or may not occur. But at some point, the the parents need to be able to determine at what point the child is able to assume responsibility for making decisions regarding their medical care. Again, the natural law assumes that at age 18, unless there are other circumstances, the family may have to go to court and secure a legal decision to continue to become the what's called a guardian or the the individual that can make decisions. Another issue is if the parents are not available through death for example, who then you know will be responsible for making these medical decisions on behalf of the child or I should say the young adult. So that's a very important issue that families need to address at some point for their child.

Q. And Jane, did you pursue guardianship for Timothy?

A. Yes I did when he was 18 and I did go to my lawyer and we went to court and I did it strictly not so much to have control of Timothy's funds or or anything like that. I did it because I was worried about him medically.If Timothy became desperately ill, I did not want the doctors to be able to tell me that this had to be done. I feel that I know Timothy the best in this world, not that I'm smarter than a doctor, but I felt that I wanted to be able to sit down and talk to that doctor and I wanted his suggestions and whether I took that suggestion or not I wanted that to be my right as Timothy's Mother and guardian.

Q. And what did you tell Timothy about the guardianship?

A. Well he went to court with us and we explained as we went along.W e talked to a lawyer and he even talked to a judge and it was okay with him. He knew that I wasn't trying to take charge of his life I mean he has his own opinion and we had even discussed him going into a home if that's what he thought he wanted like Miseriacordia. We thought that maybe he would like that socially, but you know as of this point, he has decided that you know he's just not interested in that. . But these are options that we talked to him about and feel that he has the right to know them and I don't suppose that we you know explained it all that technically. We put it in his own own terms so that he could understand everything that was being done because I I felt that he was this is his life. This is not my life.

Q. Well it sounds like you did an excellent job and you've also brought him up to be a self advocate which is an important transition skill

A. I think that it is. I think that I think that children sometimes are intimidated by adults and I noticed even when the gentleman was there working with him in his new electric chair, Timothy was putting his input in.

Q. Wonderful. Now Lou, could you share with us some experiences you and your staff members have had in talking with families and their children about self advocacy and self determination?

A. It is apparent that at some point you have to give up some control as your child matures. And for children with special health care needs, because their needs are more so, sometimes that transitioning or giving up may be difficult. We try to encourage the family to work on independence which would include for example, involving the child in decision making. And as Jane had noted, her son was able to give input you know when they were making modifications to the wheelchair. So make sure that the child has an understanding of their their condition and how it impacts on them. You know as the child matures, they're going to have a different understanding level of just how it impacts that condition and how it impacts on their life. To also to encourage the child to to be more involved in self care you know whether that be self catherization or levels of hygiene. Those types of things again dependent upon the child's ability. So that's how you can start.

Another way is to when when you go to the doctor's office, a lot of times the physician will talk directly to the parent, even though they have this young person young adult in the room with them. But rather direct the provider to ask questions directly to the young adult and elicit their responses and establish eye to eye contact with the child rather than with the with the parent. Those are some things that we try to we mention to families and try to work with them to encourage independence for medical transitioning

And I think that applies to all areas of life. I always say we have to teach our children to be self advocates from an early age, and it starts when they're really little, giving them a choice of whether they want to drink apple juice or orange juice or whether they want to wear denim or corderoy overalls and then it moves on. As you know, my daughter is deaf-blind and she has cerebral palsy and I have been teaching her to be a self advocate, to ask her own questions in the doctor appointments. Now I have her sit down at her braille writer and write the questions. Then we bring them to the doctor's office and I arrange for her to have an interpreter so if she wants to ask questions when I'm not there, she can have privacy and I've let her know that as you get older, you get to have privacy and have your own life. But it's not easy. And I do agree with you that many doctors just expect only to talk to the parents and it never occurs to them to talk to the child who is the patient and you know particularly for my daughter and other people who don't speak, it's easy to be looked over.

A. agree with Lou. I find that a lot that people will come up and talk to me and an ask a question that really should be directed to Timothy. And I'm like well you have to ask him. And they always seem to speak louder too. I don't know why they do that, but his pediatrician does now ask Tim. He doesn't ask me the questions. He asks him.

Q. I will say I don't think that doctors get specific training in this area and it's something that they also learn on the job from their patients and the patient's families.

A. You know that's probably very true. How many kids do they have to deal with that has you know that would have Timothy's problems. So I guess we have to give them credit, but it is it is interesting to see how people direct questions to me instead of Timothy and I just turn it over to him.

Q. Lou, could you tell us a little bit about the DSCC consultant's role in like getting involved sometimes with doctor visits or in training for doctors and working with young adults with specialY needs?

A. Yes we provide care coordination for families. We do make ourselves available if at the family's discretion if they want us to accompany them to an office visit or if they've left the doctor's office and they still have questions. We will either advocate for the family or at the request of the family meet with physicians to to discuss transition or any other medical questions that the family may have about the child's condition. As far as actual education of the provider it's basically one on one. You know what are the needs of the child and what are the concerns of the family and how can we facilitate that communication between the family and the provider?

Q. I see and has it ever happened that a consultant got a call from a family after a medical visit when they had been to see one of the pediatric specialists and they just said to them your child is too old and they can't come back here anymore. What would happen in a case like that?

A. Well if they had me, we would look for a more timely type of transition you know process. We found it both ways in that parents aren't the only ones sometimes who are reluctant to to give up taking care of the child, especially if a pediatrician has had a life-long involvement you know with with the child. They have concerns about continuity of care and they may find it difficult to find an appropriate time to transition to an adult care provider, as well at some point physicians. For example, it's been our experience that some physician specialties will only treat children up to a certain age be that age 14 or age 16, and then expect an adult neurologist or cardiologist to begin you know taking over the care. If we know who those providers are, we will warn the families or begin working with the families.

Q. So then there's not a hard and fast rule about whether young adults with disabilities should stay with a pediatric provider or at a certain age should change. You're saying that this is a more individual decision that it is really part of a process. Is that right?

A.Yes. It's dependent upon the child's needs, the comfort level of the family and as well as there are some adult providers who even though this is a 19 or 21 year old individual, that they're still uncomfortable only because of of their experience hasn't been with a person with that particular condition. It depends on a number of factors; the child's level of impairment and needs, the providers, both the pediatric and the adult care provider and their level of experience and comfort level in dealing with that type of condition. It is important, however, when an individual goes to an adult care provider not to cut out completely the pediatrician or the pediatric specialist because they can be a valuable resource to the adult provider. And so there may be like an ongoing consult between the pediatric provider and the adult care provider.

Q. Jane, has your family been involved in any relationships with that like that with a pediatric specialist and an adult specialist for Timothy?

A. No I can't t say that I really have had to switch my doctors. Timothy's dentist is has been with him since he's been three. His neurologist has been with him since he's been four. Dr. Rayez has been with him, his pediatric and family doctor has been with him since he's been born. So the only one that I had to switch was with Dr. Smith down at Shriners. He was an orthopedic specialist. So I really haven't had to deal with that many other doctors than the ones that I've been very familiar with. The only thing that I can say is that I know what I would do with Dr. Smith. I would go and I would get a recommendation for another doctor and I would make an appointment to go down and see this doctor before you know anything was even wrong and I would bring Timothy and see how he would interact with Timothy and with myself and if he was willing to answer questions and see how we all got along. I think that that's a key to great health care is being able to work with your doctor and I would like him to be able to take some of my input and I would like to hear his input and I would like us to be able to agree on you know what we think is best for Timothy.I think you have to sit down and do your homework and then I think that you know you have to go out and search.

Q. Well that's really good advice. I think we all need to remember that. A question for you, if you would go with Timothy to meet a new doctor and see if they might be suitable, is that something that would be covered by your insurance or would you have to pay for that out of pocket?

A. I don't believe a consultation would be covered, so that would have to come out of my pocket. But that to me would be something that would be very worthwhile because I think what I would do is introduce Timothy to the doctor and then I would see how they interact. And Timothy's a very good judge of character. He knows who he's comfortable with and he knows who he can talk to and if it was somebody that was very abrupt or somebody that he couldn't even understand, it would be difficult for him. So as long as this doctor is for Timothy, I would think and Timothy's going to be in his care, that he has to be comfortable with it. So I guess even if I did have to pay for it, it's something that I would be willing to do.

Q. It would be a good investment?.

A. Oh yes.

Q. We just have a few moments left so Lou, are there any other important things about health care transitions that you'd like to share with us?

A. Well I think if we were to summarize the discussion, I think a couple of guidelines and that would be it's never too early to begin the transition process. If you think about the future for your child, particularly the level of medical care the child requires. I think another point you know we've identified is that the best advocate for the child will be the parents because of their knowledge of the child and, of course, they have that vested interest. There are other like their case manager through DSCC or through the insurance plan to get the ball rolling, you know it's the parent that has to initiate it.

And then too to just base all decisions on on the needs of the child you know first and foremost as you look at the different types of insurance plans and what they will cover or different types of state plans or programs that are available to assist the family and helping either fund or access health care services.

Well I want to thank both of you for your time and your very helpful contributions with a lot of important transition information. I know that this will be really useful to lots of families and lots of providers all over the country and thank you for sharing your expertise with us. I'm grateful for your help and we're now concluding our webcast in the KMCO series on managed care and children with special health care needs. Thank you for logging on to our webcast production. We're very interested in your comments and questions regarding the webcast and we invite you to contact us. our e-mail address is kmco@uic.edu. Our telephone number is area code (312) 996-2233 and our fax number is (312) 413-0367. We hope that you've enjoyed this broadcast and that you will also join us for our upcoming broadcasts. They're scheduled for the fourth Wednesday of each month at 1:30 p.m. central time. Please take note that once we have aired webcasts for the first time, they are then archived on the same website and you can access them at any time. Our internet address is www.uic.edu\sph\cade\qcmc2 and it features our archived webcasts. There are extensive lists of resources related to children and youth with special health care needs and managed care, links to opportunities for on-line training and courses, information on our project staff and activities, the featured website of the month and much more. Thank you very much for joining us.

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