Transition and Health Insurance: A National Perspective
Originally broadcast: October 24, 2001
Faye: Hello everyone. This is Faye Manaster Eldar from the University of Illinois at Chicago, School of Public Health, Center for the Advancement of Distance Education. I’m the Family Coordinator for the Quality Community Managed Care project, and I’m happy to be with you today. We’re bringing you another one of our webcasts in our continuing series on kids in managed care organizations, focusing on children’s special healthcare needs and managed care.
Today’s webcast is about the transition of young adults with special health care needs and health insurance. We're very pleased to have four national experts with us today: Tom Gloss, the Healthy and Ready to Work Project Coordinator from the Maternal and Child Health Bureau; Patti Hackett, Consultant with the Healthy and Ready to Work Project and parent of a young adult with special healthcare needs; Tracee Garner from Virginia who is a young adult consumer; and Jennifer Jones from Alaska, another young adult consumer. We're very pleased that all of you could be with us today. To get started on this discussion, we’re going to be asking Tracee and Jennifer to tell us about their experience from their perspective as the consumer’s point of view. The first question that I have for you Jennifer is, did you have health insurance while you were growing up, and how did you first become aware of health insurance as a child?
Jennifer: I did have health insurance growing up and probably a series of different health insurances. I think I became aware of it probably through lots of arguments at home and trying to figure out how that system works and, you know, from transition from one insurance provider to another, just kind of paying attention to my family and how all of that worked and knowing that most of those struggles with health insurance were due to money.
Faye: And could you tell us a little bit about your special needs and whether you were born with them or acquired them later in life?
Jennifer: Sure, I was diagnosed when I was about six with rheumatoid arthritis. I have some ongoing healthcare needs. And because I had the juvenile form, my healthcare needs were more significant when I was younger. The nature of J.R.A. is that it’s usually more significant as a child and as you age. Many folks age out of the disability; however, I did not. I switched over to the adult form. So as you can imagine with rheumatoid arthritis, it creates some ongoing issues, especially developmental, lots of surgery and ongoing medications and needs such as that.
Faye: It sounds like you’ve had insurance from your parents’ work. I’d like to know how did your family help you to learn about what is health insurance and how to deal with health insurance?
Jennifer: Sure. You know, really I think--I don’t know that I ever recall there actually being a real discussion where we sat down and they showed me how it worked. I think, you know, we did have conversations about it, and I think as I started getting older and realizing it was something that I was going to have to take care of, I started to ask some questions. You know, "How does this work?" and "These folks pay for things?" and just having my own natural questions about interest in transitioning, and knowing that this was going to be a lifelong issue for myself. And I know it was a concern for my family also, that having some ongoing needs and being able to have secure health insurance was going to be a critical issue.
Faye: I see. Now, Tracee, could you tell us a little bit about your experience? First of all, could you share with us what are your special needs, and then, did you have insurance when you were growing up and how did you become aware of health insurance?
Tracee: I have muscular dystrophy, spinal muscular atrophy. That disease kind of takes over the muscles and makes them weaker over time. I did have insurance. I was on my parent’s insurance when I was younger and when my needs weren’t too severe. At the age of 13, I did require scoliosis surgery where I had a Harrington rod placed in my back attached to the spine and that sort of thing. That was probably my first encounter with, "Well, gee, insurance will pay only so much and the rest, you know, it's on you." And that was kind of like a wake-up call as far as, "We don’t have any money to pay for this, it's really expensive, and we're going to have to cut back on some other things." So it kind of like leaked into the whole household situation when it came time to pull the money together for my surgery.
Faye: Tracee did your family like sit down with you one day and discuss this with you or did you overhear them? Or did your parents say they had to make all these phone calls, or how did that happen that you became aware of this?
Tracee: I mostly overheard things. It wasn’t something that they like came to me and said, "Oh, you know, we’re having"--I was 13 at the time so it wasn’t something that we really discussed. Plus my parents probably deemed that it's probably a culture thing, African-American. It was just my parents dealing with things just kind of on their own. There were some questions probably to teachers, like my social worker or something like that at my public school who gave advice and input, things like that, but it was more so of a thing that the adults kind of handled and the children just kind of went on their merry way.
Faye: How did you feel when you found out about this?
Tracee: Well, I mean, kind of like responsible basically, but at the same time like, well, you know, they never really had any kind of blame on me even though I felt a little bad about having that some of the money had to go to this. And the surgery was really painful, so why did I even have to have it anyway? So just about, I didn’t really have any bad feelings or any ill feelings, or any feelings that I wasn’t included or anything like that. I thought it was just something, "Oh, that's just the way they are and that is how they deal with this."
Faye: I’m just curious. When either of you were going to junior high or high school, I know similar to my daughter who’s had to take consumer ed. courses in high school, I wondered if they had specific courses on consumer education that you took. Did these courses tell you anything about health insurance that you can remember?
Tracee: There were no courses like that at least at my school and there's a lot more courses on financing and being independent. But those at that time in the ‘80s and early ‘90s, there weren’t any kind of preparatory courses for, gee, when you get out of high school, you know, what are you going to do, what you need to do, and what you need to look into. So there wasn’t any kind of preparation.
Faye: I see.
Tracee: That’s happening now more so than it was then just because of what has been happening—people aren’t prepared, credit card debt and all that.
Faye: I was not aware of this. Jennifer, do you recall any intention or mention of health insurance while you were going to high school or in any of the classes that you took?
Jennifer: No, no, not at all. I took the personal finance course in high school too, and I guess that was in the late ‘80s for me too, and for sure that was not even discussed. We were lucky to get into the basics. So, yeah, health insurance was not anything that was ever discussed.
Faye: So basically this was kind of a learning-by-doing thing, both for you and for your family.
Jennifer: Absolutely.
Faye: Now, Jennifer, do you currently have health insurance?
Jennifer: I do, I do.
Faye: And what kind of insurance do you have and how did you get it?
Jennifer: I have private health insurance through my employer, and I know this was a huge transition issue for me growing up. I knew from an early age that this was going to be something I had to have, so my whole life I was kind of looking forward and trying to figure out how was I going to find employment that had insurance attached to it. You know at this time in my life, I now work for the state of Alaska, and we even talked about that when I was growing up, "Oh, God, it would be great if you could get a state job," kind of the "coveted state job." And I know other people in our disability community here in state Alaskan government benefits are usually really supportive, so I’m really happy to have found a job here at the state that I am really happy with and provides the kind of support that I need.
Faye: And have you ever been involved in any of the government programs that help people with special needs?
Jennifer: I have not.
Faye: Have you ever had problems getting a job that provides insurance?
Jennifer: Yeah, I know for me early on when I first graduated from college, again, that was kind of the prime thing on my mind was I was eligible to continue to receive or be on my parent’s policy as long as I was in college, and then I could transition to COBRA. But of course they were pretty expensive, but it was worth paying for because it was better than not having any insurance at all. So I was on COBRA for a period of time and did manage to find a job that I wanted to do, but they really didn’t feel like they could afford health insurance for me. It a small organization and my options were to either stay on COBRA or the state of Alaska also offered insurance to people who have certain disabilities and have no other—who are working and have no other way to get insurance. I never did go that route, it didn’t really look like it was going to offer very much support, and it was very complicated to get on. That was not really—it wasn’t like Medicaid, it was something that was set up specifically through the state of Alaska. So I, for as long as I could, continued to pay my COBRA benefits, and there was just a period of time that I was able to stay on that. And thankfully right about the time that I was no longer going to be able to receive that, my employer did receive another policy, and I was able to transition to that policy at work.
Faye: Well, you’ve brought up some of the very serious national problems related to health insurance and people with special healthcare needs basically of all ages. I am very happy to hear that there is a special program in Alaska. I am aware that most states don’t have provisions for that at this time. Now I’d like to hear from Tracee. Do you have health insurance at this time and what kind of insurance is it?
Tracee: I have Medicaid and I am also on a DD Waiver, which is a Developmental Disability Waiver.
Faye: And what’s that, Tracee?
Tracee: That is to take care of some of those extra things that—it’s through Medicaid, and but this is personal care assistance, therapy, and stuff like that that Medicaid might not necessarily give but through this other kind of thing you can quality for that extra help.
Faye: Tracee, how did you learn about these government programs and options?
Tracee: Mostly through trial and error. I was on one program and another program actually, and I know that when I started, for one thing, before the DD Waiver when I started not being homebound they were like, "You, you know, you’re not supposed to be on this type of program because you don’t stay at home and you go out everyday, and so you might want to look into this other one." But at the same time there is no grace period or transition period, it’s just like, "Sorry you don’t fit this. We’ll take it now. But, here, here’s all the paperwork you need to do this other thing." And also the Center for Independent Living, it’s kind of like on speed dial on my phone, and they are a great resource contact (inaudible) and also friends. My peers and like, "Well, what are you on? What are you doing?" I keep telling about that and we kind of peer counsel each other.
Faye: Well, that’s very important to know. With some of the research about children’s health programs we find that families get the most information from family and friends, and it’s good to know that in the adult world that there is also places you could go to. You were saying between the Center for Independent Living and your peers, that’s really how you learned about the Medicaid laws, advocacy skills in dealing with Medicaid.
Tracee: That’s right, that’s it.
Faye: And are you able to see the medical specialists, like doctors and therapists and equipment providers that you feel are most appropriate for your needs?
Tracee: Not necessarily. Through Medicaid you can’t really see a specialist or someone who kind of focuses on maybe neuromuscular diseases, which is what I have. They give you a list of the people around you. They give you a list of actually everybody in Virginia or wherever you live, but you go to the people that are around you. And they know, like, Family Medicine or persons who are like women doctors and things like that or OB/GYN and that kind of thing, but someone who's knowledgeable in your specific—such as muscular dystrophy or what have you—that that is in the larger hospitals, which are usually for my area in D.C., in the big, special medical facilities. So you kind of take the almost second-class of the people available. Its places like MDA, Muscular Dystrophy Association, that allow you to go to their special clinics where they see only people with your type of disability. But not all disabilities have an association like that that will pay for clinic visits. And, honestly, there is only like 50 peds. foundations. There might be an arthritis foundation or something like that, but a lot of disabilities don’t have that. And that was also where I went, Children’s Hospital, when I was younger, Children’s Hospital and the M.D.A. clinic for a specialist.
Faye: So when you need to see a specialist now, what do you do?
Tracee: MDA still does pay for some visits. You have to have a referral from your primary physician.
Faye: So it sounds like you really know how to work the system to find solutions that will work for you.
Tracee: You have to. That's the only way you’re going to get your treatment and the stuff that you need, the medications, is in talking to other people. That is the only way you are going to get where you need to be.
Faye: Well, I think both of you really are dealing with a lot of challenges that are part of our health care system nationally, but you have really good consumer skills in finding appropriate care in order to get your needs met.
Now I’d like Tom to tell us a little bit about exactly what is Healthy and Ready to Work and why is health insurance a major issue for those with special healthcare needs?
Tom: Thank you, Faye. And it's really been interesting listening to Jennifer and Tracee talk about their personal experiences, and what they’re telling us is not unique. We've been hearing this from young adults and youths with special healthcare needs and disabilities for many years and have been trying to work at this issue to help make it easier for young people to transition into all phases of adulthood. And one of the major concerns we have is that transition needs to happen from a pediatric healthcare setting to an adult healthcare setting and that usually includes some change in the insurance status. As you know, young people don’t stay under their parents’ insurance forever. There is a time when they age out of the parents’ coverage, and so those choices usually are as Tracee and Jennifer talked about: Medicaid, if the person qualifies based on their disability, or through the Supplemental Security Income Program in connection to Medicaid, or insurance through an employer, or the COBRA opportunity of paying the premium and continuing coverage through the parents’ plan or some variation of those things. And we recognize that health insurance is the way to pay for healthcare. And if the person has grown up with a disability or a special healthcare condition, they usually need more healthcare than the typical person in the population. So having health insurance is the vital way to stay healthy, and we know that you need to be healthy if you're going to be successful in your education or in employment. So these are some issues that have surfaced that we’ve been aware of at the federal government level and that the Maternal and Child Health Bureau took into consideration when it started an initiative called, "Healthy and Ready to Work." This initiative started in about 1995. And the Maternal and Child Health Bureau, an agency under the U.S. Department of Health and Human Services, Health Resources and Services Administration, the Maternal and Child Health Bureau started this initiative with the intent of being—what needed to be done to help improve transition for young people from a health aspect. And we awarded eight grant projects across the country to look at this issue. Those projects, which were in Oregon, California, Minnesota, Iowa, Louisiana, Ohio, Massachusetts, and Maine, they did a lot of work in different areas looking at system change. What needed to be changed with what was happening in the areas of transition? How could you bring healthcare professionals into the transition planning that happens through the school? How could you educate different professionals about transition issues, and bring them on the table to focus on the needs of that young person and including the young person and the young person’s family in the decision-making. So these were things that were started in the mid-‘90s and work has gone on and since then we've included some additional grant projects. One, two years ago in the state of Kentucky for the Kentucky Title V Maternal and Child Health Bureau Program for Children with Special Healthcare Needs, and now five new ones this year in Maine, and Iowa, in Wisconsin, Arizona, and Mississippi. And these more recent projects will focus specifically on state Title V Maternal and Child Health Programs for Children with Special Healthcare Needs, and how they can include transition as a concept throughout their progress of working with clients. Does that give you some basic information, Faye?
Faye: Oh, yes. That’s really good information, and to let all of our listeners know in the Resource section connected to this webcast, we will have a link to the Healthy Ready to Work Project web site and all of their publications and resources and additional links, so you can all get more information.
Patti, I'd like you to tell us a little bit about some of the Healthy and Ready to Work activities and products that are specifically about healthcare and insurance, about how were they developed and how they're being used.
Patti: I, too, enjoyed Tracee and Jennifer’s comments, because it always brings it back to reality. What happens that we've done such a great job of providing care for our kids, who then get to grow up to become adults, did we do a good enough job to think about supporting them for later? In the eight projects that have been funded as Tom mentioned in the first initiative, each project chose to do different things, some were community-based, some were state based, some were based in a family consumer organization that hired a nurse to go into public schools if that was needed. So basically they all looked at three things: One, informed decision makers, what do they do to provide more information to families and young adults, so they can make better decisions with information that was coming up towards them. The second one was how could they interact with healthcare providers? Many times we know there are health providers who aren’t prepared for this new generation of survivors. We want to make sure that the survivors have the opportunity to thrive in adulthood. And the third one was higher expectations. And I think that’s a general comment on society. What can we do to take a look at people who happen to have a disability, and what support can they have? When we take a look at Healthy and Ready to Work, we want to make sure there's enough support provided so kids who grow up and become adults live the life they want. The different materials that are available from the projects are videotapes, some are training curriculum guides, some are small fact sheets, and others like the Healthy and Ready to Work policy papers that Tom had mentioned earlier, one basically really discusses insurance. It gives you a thumbnail sketch of the different laws and things to think about.
Faye: Now, Tom, I know you had mentioned the Title V Children with Special Healthcare Needs program. Is there an adult counterpart to that program?
Tom: No, Faye, there really isn’t. There’s no one place in the federal government "bureaucracy," if you will, that is charged with responsibility to coordinate care and facilitate services to adult with disabilities. And we recognize that that’s a shortcoming, and it is something that's been discussed and is currently being discussed at the federal level.
Faye: Now so, for example, if a young adult who has special healthcare needs, they've been in the Title V program while they were growing up, finds out that they can no longer be on their parents’ insurance, but they've not been able to find other insurance, what are they advised to do?
Patti: Here’s a couple of things, Faye, and again, we're hoping that this kind of information will make people preplan versus them getting to the stop intersection and then wonder what they do. Let’s talk a little bit about why somebody might lose their coverage under the parents’ plan. In 44 states, we recognize there are state statutes that allow adult children who happen to have special healthcare needs to continue on healthcare coverage for families. The second part is--now this is if they have continuing disabling conditions, and they're not earning an income, the second eligibility status is if you are a full-time student, and that usually then will go between the ages of 19 and 22. Some plans such as Georgetown University, you can go all the way up to age 30. So it’s really wise for families to take a look at what is covered in their plan. And the third is if the person, young person, has decided perhaps college wasn’t going to be in their future, and they were trying to do the first or second-time job, they've lost their student status and they've lost their dependent status and now they're without insurance. At this point, depending upon their income, they could apply for Medicaid, and as we know Medicaid differs in each state and the income eligibility also differs. That’s why it’s really important for families who have kids at an early age that have long-term issues, chronic illnesses or acute issues that could be life threatening, to think ahead what might happen. Now if we have a youth who does not have insurance anymore and is industrious, they could become an entrepreneur and start their own business. And in many counties through the chamber of commerce, they have insurance consortiums in which you can buy into a larger group and hopefully get a small premium. You can continue with your parents’ insurance under COBRA, though we know many times COBRA is very expensive. If that’s the only option you have, COBRA can even be extended further than the normal amount if the person meets SSI criteria. And again, since this gets a little bit technical, I would direct you to our Healthy and Ready to Work policy paper on insurance.
Faye: And people will be able to access that?
Patti: Right.
Faye: Through our web site.
Now in each of the Healthy and Ready to Work projects, all of them are involved with a component related to health insurance and education about health insurance? Is that correct?
Patti: To our knowledge that many of these programs recognized that people just didn’t have a clear sense of what insurance was. They had their card, they understood the coverage, and many times they were more familiar with what they paid for out-of-pocket than verses what was covered.
Faye: Tom, I've been hearing lots of people talk about "Healthy People 2010," and I know we discussed that yesterday. Could you tell us what’s "Healthy People 2010," and what does that have to do with young adults with special health care needs and insurance?
Tom: Sure, Faye. Well, there’s a national initiative called "Healthy People 2010" that comes from the Surgeon General of the United States. And it's is a very large document that really contains health goals for the entire country for the next ten years, and this has been done for the decade before the current one. And as part of that, our Maternal and Child Health Bureau’s Division of Services for Children with Special Health Care Needs got permission to write a companion document to the Surgeon General’s "Healthy People 2010" plan. So we’ve created a 10-year action plan for children with special health care needs, and really to chart the course of what will happen, what the policies will be, and what the nation’s focus will be for the next ten years. And this covers children of all ages who have special health care needs. And there are six distinct areas that include: First of all, all children with special healthcare needs would receive coordinated, ongoing comprehensive care within a medical home. And that’s not a place, that’s the concept of care that’s set in a community, and that’s easy for a family to access and that is comprehensive coverage. Second, all families of children with special health care needs will have adequate private and/or public insurance to pay for the services that they need. So we recognize that without insurance you can't get good services. Third, all children will be screened early and continuously for special health care needs. Again, we recognize that these issues can come up at any point in a child’s life, and that the screening should take place as early as possible in an ongoing way as Tracee mentioned, sometimes your health needs change during the course of growing up. Next, families with children with special health care needs will partner in decision-making at all levels and will be satisfied with the services they receive. And then community-based service systems will be organized so families can use them easily. And then the sixth goal under the "Healthy People 2010" plan is that all youths with special health care needs will receive the services necessary to make transition to all aspects of adult life including adult healthcare, work and independence. So kind of the capstone, we recognize that no matter what the health community has done to help keep a young person alive and functioning, if that outcome is not a transition to an inclusive life, a full life in the society as much as that young person chooses and is able to accomplish then, you know, what’s the point? So we really feel we need to make changes in our society that coordinates with the healthcare community, with the education community, the vocational rehabilitation community, and all those components that go into this mix that help a person with a special health care need or a disability to make it in today’s world. And this ten-year plan sets specific goals and is not just a plan for our federal bureau, but it's a plan for the whole nation. So we're drawing in consumers and families and foundations and private organizations and the health community and educators and others. We're drawing everyone into this, and we are going to have a national kick-off meeting this December actually in Washington, D.C. to formally announce this and to get the interest of America and to get--join these forces to make this a reality by the year 2010.
Faye: Wow, well, that’s very impressive. These are all really much needed things, and again let our listeners know we will have a link to "Healthy People 2010" on our resource list, so you can get more information. Maybe now you can tell me about some of the future directions of your Healthy and Ready to Work Project about specifically around the young adult transition and health insurance like, where are people going to be able to go to get concrete help? Where are people who are in various positions helping families going to get the information and training they need to bring this out to consumers?
Tom: Well, thanks, Faye. Actually, we have the project running in six states. The new ones that were just awarded as I said, in Arizona, Wisconsin, Iowa, Mississippi, and Maine and then a project running in Kentucky. And in those states, they are charged with developing a model that the state Title V Maternal and Child Health, Children with Special Healthcare Needs program will run that will include transition services. So in those states there will be active testing or demonstrating of ideas over the next four years. And the abstract for or the descriptions of each of these projects is on our Healthy and Ready to Work web site: www.mchbhrtw.org, and we will continue to post updates and findings and materials to that web site from the project. And what we hope is that through the work that’s done in these six states, besides the one in Kentucky, that other states will take an interest and see that there are ideas here that they can adopt and use in their own states, and that eventually we will be able to spread this concept of Healthy and Ready to Work to all of the states in the country. We did have a lot of interest. We’ve had approximately 20 states apply for funding this year for this Healthy and Ready to Work initiative. Unfortunately, the money we had available, we could only fund five, but so there is a lot of interest out there. So if you're in a state that is not currently working or receiving funding for a Healthy and Ready to Work Project, it doesn’t mean your state can’t be doing things that can help young people in transition. And I would encourage people to talk to their Title V Children with Special Healthcare Needs program, get involved with organizations such as Family Voices and others who represent youth and families with special healthcare needs, and talk to the people in charge and express what services you need. And if there are problems getting those services, make sure that people in leadership and authority positions know about that, so they can help change their program system to get people the services they need.
Faye: Well, thank you, Tom. Now I’d like to ask Tracee and Jennifer, I know that you are both very strong advocates and you’re both very involved, and I understand that you do a lot of national speaking engagements about the transition issue. But specifically I would like to ask each one of you what advice do you have for other young adults with special needs about health insurance and transition, Jennifer?
Jennifer: Well, I guess that the best advice I can give is to get involved as early as possible and to make sure to always educate yourself not just about whatever your health insurance options are, but like Tracee was saying earlier, I think it's also--I agree with her completely about having peers that you can talk to, and finding out what other things in the community there are to help support you in figuring out and troubleshooting when things come up. That is what has made the difference for me is when I ran into these periods of time where it was looking like I was going to be uninsured or just making sure there was people to talk to and work out the problems with. Often the different options aren’t well advertised, so I think it really puts a lot of responsibility on yourself as an individual to get out there and find out as much as you can.
Faye: What are some good ways to meet peers and other contact people in the community?
Jennifer: Oh, gosh, well, obviously, it’s helpful for—I know as I was growing up just to keep in touch with people who I knew also had disability issues and to be able to communicate with them openly about, "Hey, what are you doing, and what works for you?" So it’s just being close to peers and finding out about things like independent living centers and is there one in your area, I think that is really one of the best places to go for some peer support.
Faye: Tracee, what's your advice for other young adults who are dealing with health insurance in transition?
Tracee: My advice is that as soon as you define a kind of purpose for your real life, not even healthcare wise, but just where you're going in direction, then you really start to care more about (inaudible). I mean, so many times, like doctors tell parents and then kids do overhear what doctors say that, "Your child has a severe disability, they might not be here that much longer," and that automatically thinks, "Well, gee, I am not going to be around, why should I even care about the future if I'm not going to be here?" And we really need to get rid of that type of mentality. As soon as I found out or as soon as I started to realize that, "Gee, I’m accountable, and I am going to be here awhile," then people take more responsibility for the way they want to handle their life, and then they are more inclined to find out things. So know that you’re here for the long-term, don’t automatically assume that what the doctor says is what goes. So many times they diagnose things and like 18 months or something like that or till the age of 30, and you're here till like you're 50, 60. So when you know that you’re more inclined to research and find your own information and also the peer thing.
Patti: Sorry, Tracee. Hey, this is Patti. And I guess I'd like to make a suggestion that if we start at a very early age understanding healthcare costs money, then it’ll become a natural transition. I would suggest that every child has their own insurance card. Many times, insurance companies only issue two cards in a family plan. And in case of an emergency it puts the child vulnerable, because if they don’t have the card with them, they may not be able to get access to services faster. Having their own card, I think they should be able to go to clinics and present this card to show that they have insurance, and this is what to do when you have insurance. As they age up into teenagehood, depending upon ability level, I would suggest having a joint checking account and then those co-pays that the child then would write the check. Something happens when a person becomes a consumer, a payer of services, the treatments different, the awareness is different, and for many children when they recognize that things cost money, everything else has a different meaning. And then when they get older they understand that, yes, they have a card, yes, they have money. You have to pay out-of-pocket this time, and then what kind of plan will work best with your budget.
Faye: Now since you brought up the insurance card, I’ll have to share with you a funny story about my daughter. My daughter just turned 20, and she’s deaf blind, and she’s a Braille reader, and I had done just what Patti said when she had insurance. She had a card and it was a "little piece of plastic like a credit card", and I told her it had her name on it in printed letters. And she knew when she went to the doctor’s office that she would walk up to the desk and that she would put it in the hand of the secretary, and she would sign for them, "My name is Maya Eldar, and I’m here to see the doctor." Well, when she turned 18, I put her on Medicaid, that was basically because she had lost employment-based insurance, but that’s another story for another time. And in our state, when you get Medicaid, you get a 3 X 9 slip of paper every month with your name typed on it. So I gave that to her and I said, "This is your new insurance card." And she was feeling it all over and she signed, "Where’s the insurance card?" So that didn’t make an impression on her, and I said, "Well, you know, you have different insurance now, it’s called Medicaid, it’s just got a piece of paper." But that is something that I taught her to do.
It’s complicated but as we can see from our speakers there are solutions. There are ways to manage. There are ways to deal with the current healthcare system. And I’d like—next question to ask all of you, what advice do you have for a family of young adults who have special healthcare needs about the insurance transition and the advice to give to the providers as well?
Tracee: This is Tracee. I would say include them more and let them start being accountable in making decisions. Let them know what’s going on. If they direct their own care, they learn to notice that, "Hey, I have a responsibility."
Jennifer: Absolutely, I completely agree with you Tracee. I think it’s important to really help your young people to feel like they’re a part of this and encourage them early on to be a part of the process and to really take the lead in their healthcare.
Patti: Having them take the lead is really important, because many times the invitation to lead is not going to be out there. As a former teacher, when my students needed to leave my classroom early for clinic appointments because they didn’t have availability of evening hours, I made it a language arts lesson. And I asked the students, "What three or four questions would you like to ask your doctor about your health status or something in your life that you want answered? And that would be a creative lesson with sentences structured, and then we would fax this. Of course, we’d also shared it with the parents ahead of time. So we would fax this to the physicians so they had a heads up that this child who was emerging as a youth was really interested in their own health status and they would recommend questions. I think for families there’s a different kind of dialogue and family leaders then have to step back and let youths emerge. And then there’s times when youth and young adults are in critical care and they’re going to need a spokesperson, so you’re going to have a little seesaw balance with dignity, and that needs to be worked out between the family and the young adult—when to get involved, when are you a coach, and when are you a voice?
Faye: Tracee and Jennifer, I’d like to ask you along the same lines, did you reach a point in growing up where either you told your family or your family offered that, just to go in and see the doctor privately, and then they would confer with the family later on?
Jennifer: You know I think for myself—this is Jennifer—I just at some point just decided I was going to take the lead on that and I was going. I was fortunate that my--I think my folks learned when I needed to do that on my own and didn’t fight me on that. I know it was really hard because my mom especially really wanted to continue to be informed, and I always felt like I didn’t mind her having access to that information. I just at some point wanted to be able to do that on my own, especially kind of entering into the teen years, being able to handle some of that on my own without mom having to follow me, so it’s really learning to, you know, it's just kind of a growing up issue and that happens to be one more thing in the mix to just let your young people go for it and try those things on their own. And I guess what worked best for me was to still keep my Mom informed and not keep her out of the loop, but that way she was willing to let me handle those things so she didn’t have to be afraid.
Faye: Okay and how about you Tracee?
Tracee: For me it’s a little different, I still, like during certain things that I talk with the doctor, it’s like, "Okay, Mom, you can go in now." For the most part she’s there still with me, and I kind of like that. I like that support and having her there and help bring up some things, and especially since she’s been through all that stuff and everything so, we’re still pretty, she’s still pretty involved in the whole doctor thing.
Tom: Faye, this is Tom. If I may jump in and say that I would like to encourage young people and their families to really include their doctor in the discussion about transition planning. And to make sure the doctor’s aware that the family’s taking a very proactive stance here and asking questions about the young person’s future and about making that transition to adult healthcare and also about insurance. The doctor him or herself may not know, but they may have someone in their office, an office manager or a social worker or a nursing staff, someone who may be very familiar with insurance issues and who may be a real good resource.
Faye: Oh, well, Tom you read my mind because I was going to ask you actually to speak next about this topic and also to clue us in a little bit about the Healthy and Ready to Work Project, and are they involving the parent-child provider issues, are they dealing with that getting in that direction.
Tom: Yes, they are. The new project that were just awarded this year and the Kentucky Project, which all count to our Phase Two of Healthy and Ready to Work, are all charged with having, first of all, youth advisory groups to work with them as they, even from the time when they started putting together their applications to apply for this funding. They have youth advisory councils and they’re working with youth and families to make sure that as they implement the project that there’s input from the youth and families in regards to how the state model is being developed. They’re also working, for the most part, to train and to help build skills around dealing with the health community, with the health providers, and in terms of health insurance. And as we’ve already said several times each state—the health insurance laws are regulated by the state, and there’s a health insurance commissioner usually in each state, and if the person is covered by Medicaid. There’s a Medicaid program in each state that is different. And so it’s very important for youth and families to know what those rules are in their states and to give input, and the state laws are there for the state residents. And so residents are entitled to have input to those laws and when components or parts of it doesn’t work properly they need to give their feedback. And also there’s a lot of misunderstanding. So many times it’s simply that a person doesn’t know to which program they might be entitled, and so it’s a matter of finding out through those organizations that we talked about--the support or advocacy organizations or from the agency or office directly. But our programs at Healthy and Ready to Work project are working in those areas. And one thing we didn’t talk about was the Ticket to Work and Work Incentives Improvement Act that was passed as a federal law years ago that is providing for a buy-in to Medicaid for people with disabilities who are working. So this is something new that wasn’t allowed in the past, that some states have already signed on to do this to allow those people who would normally be getting (inaudible) Medicaid, if they’re working, to simply pay a premium on a sliding scale based on the amount of their earning. And so that will allow them to work and still have access to Medicaid, which we know in many places Medicaid covers more things than private insurance, so for many people, they couldn’t have their personal attendant services or other things that they had to pay out-of-pocket or their private insurance wouldn’t cover but Medicaid does. So hopefully this initiative and as more people speak up in their states, encouraging their states to participate in this, it will be a real positive thing for the future.
Faye: Yeah, I’m really glad that you shared that with us, Tom. It’s very important for us to know. And on our site we have links where you can go and get the state-by-state contact information for all the different government agencies within your state where you can go to get more help So we just have a couple of minutes left, and I’d like to ask each of you if you have any parting advice for the people in our audience about transition issues for young adults with special healthcare needs.
Tom: Well, this is Tom, and I’ll say I’m really thankful or grateful to be able to be part of this today and say to everyone, don’t give up, we’re rooting for you, and we’re trying to make the federal program better. President Bush has something called the New Freedom Initiative aimed at people with disabilities that is really having all the federal agencies work together to look at their programs and try to make changes that will improve the lives of people with disabilities. So we’re very much in favor of helping young people with special health needs and disabilities to make those adjustments to get to work and to receive the services they need to go to whatever their capacity is in their community. And I wish you well and know that I’m here and grateful to or willing to answer questions and help in any way possible, just reach me through our web site.
Faye: Thank you so much, Tom. I really appreciate that and will really look forward to getting more information about the progress of Healthy and Ready to Work in the future. Anyone else have some advice for our listeners? Patti?
Patti: Yes, this is Patti. I guess one of the things as a family member and also as a former teacher if you start early it becomes assimilated. I would definitely have kids sign-off on permission-to-treat forms. Many times families just go ahead and do this, and the kids who are under 18 didn’t realize that they had the power and that (inaudible). And as kids started doing this at age nine, 10, wherever they're cognitively understanding the situation, recognizing nothing happens without their permission and then again at the transition. The second is an emergency medical form. One sheet that tells a medical summary and it sort of what stays in a kid’s wallet, a backpack and also on a family member. If there’s ever a crisis, you don’t have to wait for a family memory bank to kick in or if it’s—try to find a file in a hospital, and the person’s wishes then are honored. What is it they want done? What is it they don’t want done? Where do they want to be treated?
Faye: Okay, well, that sounds like a good resource for the Resource section of our web site, also so people can access this and print it out, so if you can forward that to me Patti, we will post it, and Tracee and Jennifer, do you have some closing advice for us?
Tracee: Just get educated about everything. Don’t be afraid to ask around and see what other people are doing, especially friends and things they been through, especially the older people have been through what you’re eventually going to go through, so they know what's the best route to take.
Faye: Thank you, Tracee. Jennifer?
Jennifer: I guess lastly just lead--get involved. It’s your own life, and you’ve got to take control of it and get lots of different opinions and different ideas and educating yourself is going to be critical to success.
Faye: Well, thanks so much to all of you. You are all real experts, you’re very knowledgeable, you know the issues, and you’ve given us so much valuable information today. I want to thank you for logging onto our webcast production. We’re really interested in your comments and questions about the webcast, and we invite you to contact us. Our email address is: cade@uic.edu. Our Internet address is http://www.uic.edu/sph/cade/kidsmco. Our telephone number is area code 312-996-2233, and our fax number is 312-413-0367. We’re located in Chicago, Illinois, and we are on Central Time. We hope that you've enjoyed this broadcast, and that you’ll join us for upcoming broadcasts. They are 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 our web site, and you can access them at anytime day or night. Thank you for joining us.
End of interview.