National Youth Leadership Network Webcast Presents Healthcare Transition. Presenters: Anna Johnston, Patti Hackett, Dr. Al Hergenroeder, Mary Matson, Tim Moore, Stephanie Orlando, Kara Sheridan and Claire Stanley. >> CLAIRE: Hello everybody and welcome to today's teleconference call entitled healthcare -- Transitioning Healthcare. My name is Claire Stanley and I'm a member of the National Youth Leadership Network and I'll be your moderator for tonight's teleconference. First I'd like to take a moment to -- a brief moment to tell everybody a little bit about the call today. The National Youth Leadership Network is conducting this teleconference with support from the Independent Living Research Utilization or ILRU. This is scheduled to be an hour and a half long call. During the first hour of the call, speakers will answer some prewritten questions that deal with the issues around healthcare and transitioning healthcare, which affects youth. And then the last 30 minutes of the teleconference call will be for participants, those of you listening to ask the speakers questions. Once the speakers have answered all the chosen questions, the telephone lines will be open, giving you guys a chance to ask the speakers a question. For those of you joining us online through the webcast, can you send your questions to Elizabeth Kolbe at eakolbe@gmail.com at any time throughout the call. At the end of the speaker session (inaudible) that will be given in sections by an ILRU operator on what buttons to push in order to begin to ask us questions. Today we're joined by Tim Moore, the founder of Voices for Gap Kids and Kara Sheridan who is currently studying to gain her Ph.D. in clinical psychology by and a member of NYLN, Stephanie Orlando from Youth Power and the New York chapter of NYLN. Patti Hackett, Mary Matson from Centene Corporation who is an SSI director, Dr. Al Hergenroeder, medical doctor from Baylor College of Medicine, and Anna Johnston from Carolina Health and Transition. Now I'd like to take a quick moment to give each speaker an opportunity to quickly introduce themselves. We'll go ahead and start with Kara Sheridan. >> KARA: I'm Kara and I'm from Miami, Florida working (inaudible). So my relation to this topic is both my research focus, one of my research focuses. I look into issues like barriers to health care for people with disabilities and I try to focus on things like attitudes instead of just physical barriers like accessibility. And also my personal experience with this topic is I'm also a youth and I've been transitioning into my own kind of adult health care world, my transition was very clear-cut in the way that I went through Shriners Children's Hospital my whole life so my age of 21 was the end of my care there and I had to make the transition. So that's my relation to the topic. >> CLAIRE: Next up we have Tim Moore. >> TIM: I'm reading on behalf of Tim Moore. My name is Tim Moore I'm 22 years old I currently live in Virginia. I receive Medicaid waiver services under did developmental disabilities waiver. I have been directing my own care for over two years since I moved into my own place. I have had many experiences with the Medicaid/Medicare systems and finding service providers. I currently participate with two groups of advocates and advocates who are working on making the system work better for people with developmental disabilities in Virginia. >> CLAIRE: Next up we have Stephanie Orlando. >> STEPHANIE: Hi, everyone. I'm Stephanie Orlando, the director of Youth Power which is the statewide youth network in New York State and is mainly geared for youth to have a voice within their services mainly for mental health care and this fall we'll be branching out into (inaudible). And I'm now 25 and I started doing this because of my experiences in the mental health system and just really wanting to make sure that other youth knew that they weren't alone and had an opportunity to have a voice within their own services. And so I've been doing that now for awhile and a lot of what our network focuses on is transition to adulthood and so I'm really happy to participate in this call. >> CLAIRE: Up next is Patti Hackett. >> PATTI: I'm co-director of the (inaudible). And we're funded by the maternal child health bureau. We provide technical assistance to states through grants, medical providers, family leadership organizations and also youth leadership organizations. >> CLAIRE: Up next Mary Matson. >> MARY: Hi, I'm director of (inaudible) foreseen teen corporation. We're a health care company that provides related service toss individuals seeking benefits under Medicaid, your TANF, pregnant women and children and we also provide services to folks who receive supplemental security income or SSI and recover the state children's health insurance program. We have health plans in eight states around the nation and we're interested this topic because many of our members who are enrolled in managed care of course are aging out so we have to take care of their benefits. >> CLAIRE: Dr. Al Hergenroeder. >> DR. H.: Hi, I'm Dr. Al Hergenroeder from Baylor College of Medicine and Texas Children's Hospital in Houston, Texas. I'm the project director for the maternal child health bureau funded leadership education and adolescent health training program, it's a five-year training program that's designed to train physicians, nurses, psychologists, social workers, dieticians and public health professionals to become leaders in the field of adolescent health. And I work and my teamwork directly with youth and young adults with chronic illnesses. I've also been the director of a CME course, a continuing medical education course, the transition from pediatric to adult-based care for the past eight years. >> CLAIRE: Anna Johnston. >> ANNA: I'm with the North Carolina Division of Public Health. I'm also the program director of the North Carolina Office on Disability and Health and the director of our Maternal Child Health Bureau project called the Carolina Health and Transition Study and we're working to assist and improve transition options from pediatric into adult health care for youth with special health care needs. >> CLAIRE: Okay. Before we get started, I want to remind all participants that you won't be able to ask any questions until the later portion of our thing -- of our teleconference. So please try to remember any of your questions. And we're now ready to begin asking our participants the chosen questions. Each speaker will have up to three minutes to discuss his or her answer to the question. Let's begin: Our first question goes to Dr. H. What are the major problems with transitioning health care and what must be done to correct them? >> DR. H.: In the course of three minutes, I'm going to try to highlight what I think are some of the key problems. There is a list that's at least -- I came up with about 11 items and I'll try to highlight them and in the course of this I won't be able to get through all of them. And then I'll make some suggestions about proposed solutions. One of the biggest problems is inadequate mental health care provision and there are some structural problems with that specifically health carve out. The proposed solution that I would have would be to, first of all, establish mental health and medical health parity and insurance coverage and also to combine mental health care payments and medical payments under the same system. So, for instance, I can see a patient and get -- that patient and their family can be covered by one insurance company, but the psychologist that I work with who literally is next door to me and in the same clinic may not be able to see that patient. So it really works against holistic and integrated care. A second problem is a lack of a medical home so that youth and young adults with special health care needs need to have a medical home where they can get primary care and preventive care in addition to whatever specialty care they are getting from their specialist. And there is a lack of access to exercise, wellness and recreational facilities. So in the context of youth to young adult who is trying to transition from a physical point of view, exercise is important, but adaptive exercise facilities are simply not available to most of those who need special adaptations, and so that component of their health that would a system in transitioning into adulthood is just not available. There is a lack of adult specialists in a variety of pediatric conditions and there are a number of ways to look at this. My colleague, in D. C. points out as an internal medicine physician who specializes in arthritis, there actually are a lot of arthritis doctors who are willing to provide care for those transitioning to adult-based services, however, I think it has to do with a communication issue between pediatricians and adult specialists. So I think, however, there are a lot of adult specialists who need specific training in dealing with the issues of youth and young adults period, plus those with special healthcare needs and the special needs that they bring. I think there is a lack of family centered care in this process, that is a lot of people think they practice familiar centered care, but unless they are sitting down with the families regularly and asking for input on things as simple as the hours of clinic, what the clinic should look like, what kind of health education is provided, et cetera,s, they aren't practicing family centered care. A huge problem is the lack of insurance and I know there is a variety of people on this call who will address this and are more expert at it than I am, but we run into a huge problem with people trying to transition into adult-based services and literally don't have medical or mental health coverage and there is a lot very problems in insurance specifically in managed care systems. So care coordination services or case management services aren't covered. So even if a physician or other health care provider in the practice wanted to do holistic care and provide some case management, there is no reimbursement for it. So that's a huge disincentive for a medical home practice or a specialty practice trying to provide transition services if there is no reimbursement for it. It's simply hospitals and clinics have to have that in order to remain financially solvent. So these are pretty labor intensive services that by default end up being done by parents or the family members or the guardians. And if we get insurers to start paying for these services, I think physicians and the interdisciplinary teams will start taking on a lot more of these activities and trying to promote successful transition. >> CLAIRE: Okay, thank you, Dr. H. We're going to pass the same question on to Mary Matson. >> MARY: Thanks, Claire. The only thing I can think of, and Dr. H. may have gotten to it in his list, is are we really receiving a full medical history of the consumer? Typically consumers may go to different physicians and we don't have a true history of what treatments have been provided and things of that nature. So I think I know a lot of states like Texas is looking at developing a health passport to follow their foster care kids who are going to be going into managed care. So something like that may benefit in transitioning health care. >> CLAIRE: Okay, thank you. We'll move on to our next question which is directed at Kara. The question is what steps can we take so that our own health care is secure as we move into adulthood? >> KARA: I think the first step is to learn your history, which is the first thing we're faced when we go into really health care setting whether it be mental health or general practice or anything, is the daunting forms that you have and it can be intimidating if you have -- and it can be a weird feeling to not know your own medical history, but if someone else has managed that for two decades then that's totally understandable. The first part is just to ask whoever -- whether a parent or case worker -- whoever has been managing your medical history before your transition to help you learn your own history so you can be comfortable and give all the information that's necessary so there won't be a gap in your treatment because you're not aware of your own history. I think also going along with that is just evolving the confidence and the communication to discuss your needs. That means learning about understanding what your needs are, but also being comfortable talking about a variety of different health concerns, whether it be reproductive health or the different issues that you face as you transition to an adult. You need to be confident enough to talk about those with unfortunately usually pretty much a stranger because of how our medical system is. We may not have met that person but we need to be confident to talk on to them about certain private issues. In the past those issues might have been brought up with someone else for you. I think the second part is just to recognize that discrimination can still happen in these sectors, a lot of people are caught off guard I think when they experience oppressive attitudes or just (inaudible) from someone who has a high level of education and if you prepare yourself that discrimination is still present in these areas, then you can watch for it and just be aware and confront it. If you think that part of the treatment you're receiving is based on your disability in a negative way, be prepared to mention that and deal with it. And last, it's important that young people with disabilities as they take on the role of leaders of their own health care, they emphasize the importance of overall health because a lot of times we focused on the health care that has been disability specific and as you get to and you will, you're responsible inform your own check ups across the board and a lot of research has shown that people with disabilities neglect just general health care because we're so focused ongoing to our specialist. I know for me, my condition is orthopedic, so I can easily forget to go get my blood pressure checked because I'm seeing (inaudible). That's another thing to keep in mind as you move to adulthood and also remember to keep a check on your mental health as well and not to neglect that if most of your check ups are focused on another specialty area. >> CLAIRE: Thank you, Kara. The same question to Stephanie. >> STEPHANIE: I think that to follow what Kara had said, it's really important to start early and being involved in your planning for your care. What we do in New York State within mental health we've been really trying to make sure that youth have a say within their own treatment planning. That means going to their meetings that might be the wrap around meetings which are generally meetings where all of the service providers kind of work with the youth together and talk about what's going on and do those things. (inaudible) and it's really important to be involved in those meetings. In some areas you can actually get an advocate to help you make sure that your voice is heard within those meetings. And if you have practice doing that then you're more able to handle that as you become an adult. Those are really important because a lot of youth like myself who really a lot of times were more driven without like a lot of choice in the services area, make sure that you have what you're looking for and what your needs are and are met early so when you do turn to 18 because the mental health at least here in New York State you age out of the children's system at 18. And so that means that you have choice within your services, and you know a lot of youth end up completely dropping out of mental health services all together without any sort of plan on how to get other supports within the community. It's really important to start off early making sure that your care is meeting your needs so that you don't just drop out of the supports without any (inaudible). That's really important. It's also really important as you move into the adult systems to realize that there are some differences (inaudible) and that it's really important to look for stuff that is what you want and what is available for your age range to really kind of going out and making sure -- looking at what's available and also coordinating that. As Kara mentioned, you often have a lot of doctors you have to work with and if you also have like a substance abuse problem or you're coordinating multiple systems, it's important to know who your fun people are and make sure that a lot of them have communication between one another because you may have had that more in the children's system than you might have within the adult system. That's all I have to say. >> CLAIRE:Perfect. Thank you, Stephanie. Move on to our next question which is directed to Patti Hackett. The question is health care transition is much like students transitioning out of special education to vocational or college education. Who should be involved in the transition process and when is the best time to start making plans for this transition? >> PATTI: Thank you. And I appreciate what the other speakers have already touched upon. So you're going to probably hear some echos in what Anna and I will both be sharing with you. And let me start off by saying that answers will be provided in two sections, one about the youth leader and one about the youth individual. I think one of the things we need to recognize when we're in education we know that eventually you're going to graduate and move on to either post-secondary placement or hopefully some vocational program or out into the community. We rarely have this discussion around health care and this is an area we're really working hard at. So we recognize our goal is here preparing for the difference, moving from pediatric to adult health care systems and services. As a youth leader you can do this by starting to partner with your state Title V programs, family voices, national state chapters, MCHB funded state and community projects and also identify adult lead erst who can be service allies and mentors to get you plugged into these spots. But having this kind of expertise really comes from personal experience and we recognize nationally through our data around providers that many of the physicians aren't teaching young people early and often. So when they answer the question when is the best time to make plans for transition, I believe it starts right after diagnosis and we need to understand that people get to grow up and they get to have a future. And the future can be a lot rows year when we prepare for it. So as an individual, I think we need to remember who is the patient. Families are only temporary spokes persons speaking on behalf of the minor child. So we need to get young people who are growing up with a diagnosis involved as early as possible. If I told you I was going to move to France for 18 years, the first thing you would say to me, are you going to learn French? Why aren't we teaching health speak and we need to do a better job of that. So the skills I would say for young people -- if you don't know now, you should know by tomorrow or pretty soon, know about your diagnosis and carry a portable medical summary and an insurance card at all times and for my student when waste a teacher, I would encourage this in grade 3, know your health and wellness baseline. Even if you have a complex medical issue, you have a lot more well days than sick days, so what made those a difference for you. So when you need to report you can share what the difference is. Organize what the impact of your diagnoses will have on your productivity and life choices. We just need to prepare for that. Getting your voice heard, not only by families, but also by physicians and as young people mature, they need to be very vocal and they need to have that confidence that the earlier speaker talked about. We need to be prepared for the doctor visit and also know how to find a primary care physician. Not all the body parts have a diagnosis and we need to look at the well issues as well. Learning how to negotiate and compromise without compromising your health issues is important. Have an emergency plan and advanced directives and health care surrogate and power of attorney. Anna, do you want to mention some other things? >> ANNA: I guess one of the pieces that's come up with our project that I'd like to mention is I totally agree with Patti and you're a really hard act to follow. One of the things that has come up with our project is the necessity of having an individual time line for planning your transition. A lot of times youth that have cognitive difficulties or intellectual disabilities may not be able to start at the same point that youth without these issues are. Sometimes we forget about that piece; but other than that, Patti, I would say -- kids, your voices are really important and if you need an advocate, a peer advocate, family members, anybody you can find that can help you speak to the doctors -- and the doctors also can run interference with the families and the youth. So I think -- one of the things we're doing in our project is making sure that the families, the youth and the physicians and medical providers are working together and that they are all listening to each other and I think that kind of a working arrangement will be very helpful for transition. >> CLAIRE: Thank you. Our next question is going to go to Tim and the question is what are the differences in youth versus adult mental health care services and does privacy change in any way as it pertains to one's records and one's family involvement and their mental health care? Beth, are you going to read the answer? >> TIM: Sorry, I was on mute. I'm speaking on behalf of Tim. When you're under 18 your parents or guardian have access to all your records and know what medication you are on and can talk to your doctors without your permission. In most cases a person 18 or over decides who can talk with the doctor or therapist and must give permission for any information about your care to be shared with anyone. Unless the court has appointed a guardian for you, the mental health profession ago must honor your decision on who to talk with. This also means that you need to be responsible for keeping your appointments and following your treatment plan, especially if you are taking medication. You need to know when to ask for help from someone you trust. Family member or responsible friend. Try to communicate with your doctor and family when you need -- at what you need for support to help you manage your mental health issues. And as far as privacy, yes, the privacy laws protect your rights when you reach the age of 18. You decide how involved you want your family to be. >> CLAIRE: Thank you. And the same question directed at Stephanie. >> STEPHANIE: I would say the differences -- there is a lot of differences within the children and adult mental health services that, down, as an adult you're more likely to be able to have access to a peer advocate which is somebody that has been through the mental health system and can kind of share with you more of their experiences and also more information about your rights and how you can direct your care. And this is somebody that you know is coming from a more object representative point of view and not necessarily -- they are supposed to be helping you find your voice. So that's one major difference. Try to get some peer advocacy. The second thing is that you can really start to have more choice within your services and really kind of guide this. What's really important to ensure that like you really do have what you want is to fill out an advanced directive. You can get that online through the (inaudible) center. That would be www.eazelon.org. And I'll make sure that the moderator has that to put up on the website and you can either order one for two dollars or just view it right there and this ensures if you ever are hospitalized that your wishes are followed to the letter. So that means that if you don't want a certain type of medication, if you'd rather have alternatives in the community, that that's really honored. Its protects you from certain types of -- things that you might not choose to have. Like believe it or not you can still be forced into things like electroconvulsive therapy and a lot of groups here are currently working on getting that where you can't be forced, but that actually is still happening. If you have other things, you can have that listed in there and that's why it's really important to fill that out so that your wishes -- you really make sure your wishes are protected. It also will say -- you can designate a specific person if you would like to as well to kind of be there as your main go-to person. And you know it is really important to keep all of your choices in mind because there are a lot of choices within mental health services and a lot of alternative that is are out there. I personally have gone through the medical model and right now I use a lot of alternatives as my main support because that's just how I choose to do it. And you have that right to choose those things as an adult and fill out your advanced directive that will really protect you. >> CLAIRE: Thank you, Stephanie. Moving to our next question, which is directed at Mary Matson. How do services change when dealing with Medicaid or Medicare in the transition process? >> MARY: Major change that can occur if a youth is receiving Medicaid benefits in their state, they should be receiving EPSDT benefits that stands for early and periodic screening diagnostic and treatment. And it's a mandatory package of Medicaid benefits for all children in all states. And it provides the diagnostic and treatment services for acute and chronic, physical and mental health conditions. These are services like therapies, in-home skill nursing, things of that nature. When a youth ages out and that's going to determine in your state whether it's 18. It on could be anywhere from 18 to 21 and becomes an adult, those services or benefits end. So a youth at age 21 may remain in their state Medicaid program, but no longer have the therapies or the private duty nursing or skilled nursing they were receiving under the program. So that could be a major change. Another thing in many states is most people are aware states are looking at mandating Medicaid people to be enrolled in managed care organizations. Many of the states either carve out children on Medicaid where they just stay in the traditional fee for service or they can voluntarily enroll in managed care, but typically for the age and disabled population, most states are starting to mandate that they enroll in a managed care organization. So then you are having to deal with, you know, how do you choose a managed care organization, all those sorts of things. So you need to see what exactly is your state doing and what you have to learn in their Medicaid program. >> CLAIRE: and the same question directed at Anna Johnston. >> ANNA: I want to add a little piece about -- earlier Mary talked about SSI from Social Security. I think one of the things that is overlooked is sometimes if youth and children have not been eligible for SSI, which in most states also entitles them to Medicaid, (inaudible) tay their family's income. Once they become 18 they are eligible for SSI as their own person and their family's income does thought count towards their eligibility and I would also say that Social Security and SSI have a lot of programs for youth to help them keep their benefits and also maintain their Medicaid, things like the student earned income exclusion which allows students to earn quite a bit of money and not have their benefits impacted at all, past plans and other things like that. I would say check into your SSI if you're having trouble getting Medicaid as an option of getting into the Medicaid system. >> CLAIRE: Thank you. Our next question is directed at Tim. The question is as youth leaders, what can we do on a local and/or national level to ensure that health care is accessible and affordable to people with disabilities? >> TIM: For the last two years, I have been networking with two groups on the issue of Medicaid waiver services in Virginia. One group is working on provider rates and nurse delegation which are issues that prevent people with disabilities from accessing needed services to keep them in their home and community. The second group is a group of self-advocates who are working on making Medicaid waiver services more person centered. Hopefully, these changes -- hopefully changes will be made to allow the person to have more control over the type of services that are provided to them. Networking with these two groups has helped me to understand how the system currently works. I also have identified what change Ed need to be made to make sure that health care is accessible and affordable to people with disabilities. >> CLAIRE: Stephanie the same question for you. >> STEPHANIE: Well, within New York and we've been doing a lot right now to actually engaging all of our state agencies. So in a lot of ways, like right now a lot of states are starting within their department of health youth advisory councils and currently we have one that just got started that is focusing on transition and this very topic. There is also a way to go to your different office of mental health, and really make sure that the services that you really want are available and really make sure that your voice is heard. So within that you can really organize more of like a grassroots movement around these things. The organization I work for within New York State along with on lot of other members of a coalition to pass mental health parity. Right now there something similar going on on the national level. And we actually in New York State -- our organization is saying -- the one that's currently on the table is not as strong as the one we have in the state. So there is debate over that. And then also on the national level being involved within youth movements is really important and that's what I would say is really the best way to make sure that we all work together to have our voice heard. So right now like joining the NYLN is a great thing to do. Also I currently chair the National Council on Disabilities youth advisory committee and that's a great way that youth are able to give input on the enforcement of (inaudible) that have to do with our protection and really making sure that they are implemented in a way that best represents what we feel we need. So really making sure that we can give recommendations to (inaudible) that turns around and makes federal recommendations. So there are groups out there. A lot of the more grassroots organizations are doing a lot with young leaders to make sure that we're included within all of the planning and things that they lobby and advocate for. So really getting involved not only looking at what's in the youth, but what's in the general independent living movement, what's going on out there and really sharing your voice. If there is something you've got that you would love to see more of, then you say that. If there is something that you didn't like that you don't want out there anymore, you can talk about those things. It's all about making systems change and there is a lot of avenues to really make sure your voice is heard and it's the best way to go in terms of really making sure that we have a say. If we don't do it, who will? >> CLAIRE: Thank you, Stephanie. Moving on to our next question for Patti Hackett. Where might an individual go to find resources concerning health care? >> PATTI: Thank you. On the website for today for the webcast, I have a project has provided a couple of tools we'd love to have you all review and perhaps provide us some feedback. The one is on the portable medical summary. One is medically complex and the other is a sample for those who may need more supports. There is also two checklists called changing roles for youth and also one for families. So many times in the field we've been asked questions of nobody told me what to prepare for and all of a sudden age 18 happened and take a look at these and see if you find them helpful to get you -- a status report where you are and where you may want to be later on with more skills. But there are three websites we highly recommend, naturally our own. There are five tabs that have information, two of them I think of high interest to you all, one is tools and solutions which are a variety of tools we've collected nationwide and please let us also know what you like to see on this list if it's not currently on there and also one on healthcare. We have insurance fact sheets that talk about public and private options. So we're very pleased to newness that starting this month we have a new healthy way to work coordinator. That's Malory Byr. The other two websites are the University of Illinois, Chicago division of specialized care for children. They have a really good health care checklist and also teaching sheets for aging 0 to 5, 6 to 13 and 14 to 21. And the last website is the University of Washington which has been real leaders in this field and they have an analyst and projects. They also have autonomy checklists and a resource notebook called working together for successful transition. >> CLAIRE: Thank you. And that same question directed at Mary. >> MARY: More and more we're finding the independent living centers and other disability organizations are really actively getting involved in Medicaid issues and healthcare in their states. So they are always a good avenue to go to. I believe most United Ways have 2-1-1 numbers now to call or even have resource databases you can go to. CME companies -- and I've also found that a lot of states, the states department of insurance has just a lot of information on different health plans in the states and the benefits they cover, things of that nature that always refer you to Medicare and Medicaid. >> PATTI: I want to add to that. This is Pat tie again. If you take a look at those insurance websites, keep in mind in over 37 states in this country there is a provision to be able to maintain your parents' family plan. It's called adult disabled dependent care. If you declare prior to the age of 19 that you have a disability, there is a possibility you can maintain that health care coverage. There are some innovative practices by New Jersey which is the first in the country, Massachusetts, Maine and a couple of other states following suit that allow you to expand family plans regardless if you have a disability. They recognize between the ages of 19 and 29 with or without a disability you are likely not to have a health insurance and that's a very critical time. There is lots of things going around. >> CLAIRE: Thank you, Patti. Before we move on to the next question, I just wanted to give you guys a quick update. We're getting closer to our portion of the call when participants can ask their own questions. So just make sure that everybody has their questions ready. In about 15 minutes so you can be prepared to ask those and if you're going to send them via webcast, again, Elizabeth's E-mail address is eakolbe@gmail.com. And you can send her your questions. Our next question is directed to Kara. The question is what can be done to smooth the transition from youth to adult-based health care? >> KARA: I think it already has been stated to start as early as possible and I love the idea of even in elementary school starting the -- at least the knowledge that this will eventually be the young person's responsibility. I think that's difficult even as we get into your overall adolescent years because just to be real about it, a lot of this stuff is not necessarily very fun and it can be really tempting you know when you're annoyed by the phone calls you have to make and the paperwork you have to deal with. It can be so tempting just to give it back to your parents and you just call and you handle it. That kind of proceed longs the dependence that you have in that way. And sometimes I find it impossible some of the privacy acts and things like that so I think instead of looking at it as such a drag and such a pain to just try and find the aspects of it that are empowering and it is really em powering to learn you have so many choices that are available the ball is in your court now and you can make the final decision and the final say and you're your own leader when you go into these appointments and when you communicate with the professionals. So I think the first thing when you go in to a meeting like that or when you're e doing any kind of communication is to realize that you almost always have choices. And a lot of times just the way that things are presented, especially with our managed care systems where everything is kind of rushed and form letters that may not be accessible and things like that, the message can be lost that there is almost always a choice involved. So I think it's helpful to remind yourself of that. And also if you do, during the transition phase, it's a lot of times helpful to still have people go with you to support in the beginning phases especially and make sure those people are on your team are your alleys, so talk with them before you go to the appointment or before you make the phone call and get them on the fact that if the doctors or professionals start directing questions back at them and you become kind of the object or the topic of the conversation instead of actively involved, get your (inaudible) to help you with your transition notes and putting you in as a speaker because you're someone they should be talking with and not about. I think last on the more global kind of feel, too, is that we can -- as leaders we can smooth this transition for youth with other disabilities, too. So a lot of physicians want tow hear from adolescents and they are trying to actively learn how to talk to us effectively and there are advocacy groups and legislation is coming up and it's an exciting time for us. Even if you're getting a pretty good handle on our own transition to still stay involved in this field and try to help the transition for others as well. >> CLAIRE: Thank you, Kara. The same question directed for Patti. >> PATTI: That was a great overview. I really appreciate it. I think the only thing I would add to that is always remember in addition to choices, you have the option to move to different physicians. So if you find one physician practice isn't meeting your needs, you still have that option you can go find the best match. That's number one. No. 2 on the policy issues, your voice needs to be heard. We've learned a lot from the family leadership groups historically that over time as they decided to work together, not just independently, they work together, the voices were heard. We anticipate the same thing is going to happen to youth around the health care issues because after all who was the system for? To make it really smooth, you're going to have to be very informed. In that 15 minute or less appointment, it's going to be up to you to drive that system. You're going to be knowledgeable, have tools at your fingertips. As my son always reminded me, he said what did you want me to be -- a medical book or have a life? That's why I made that portable medical summary so it can be a cheat sheet for him. He got to live his life the way he wanted, but when he needed to have the information, he didn't ever have to say mom, what was it? The paper spoke on behalf of him on the days he could speak or needed help speaking. He would be competent and be involved and know nothing is impossible. Keep finding your alleys to mentor you through the process. >> CLAIRE: the next question is for Dr. H. The question is how and when should youth start to prepare for their health transition and what information should a youth know about their own care and condition? >> DR. H.: I'll echo what was said earlier by Patti is that I think the transition plan needs to start soon after the diagnosis. So -- and I've been taught that by many parents who said if someone had started me thinking about this in childhood, I would have been better prepared through adolescence. So what we've tried to do here in Texas Children's Hospital is that we're in the process -- and it's still preliminary. It's taking quite awhile to get this up and running; but we're in the process through our electronic medical record of establishing a template so that every teen and young adult who comes in to any clinic will have a transition template that comes up as part of their electronic medical record. And so some of the specific questions -- and these are broken down in categories, 11 to 13, fourteen to 16 and for instance your question about how should they start, we start at age 11 to 13 with the question, can you tell me about your disease so that we feel like if people have a basic understanding of their illness and then we ask them about some of their -- the names of their medications and why they take them, those are the kinds of things that we would think that kind of information would start the youth or the young teen towards understanding what we think are important first steps in transition and potentially managing their own illness. We also ask if people can explore what would they do in an emergency, how would you be able to contact your physicians? And needless to say, if somebody is 11 to 13, depending on their cognitive abilities as well as the specific diagnoses, some of these questions need to be altered and the family assists with them. Nobody would expect every 11 and 13-year-old to know that, but the point is if they start asking the questions at that age, by the time they get to be 18, for instance, maybe they'll know the answers. We ask young women to start thinking about menstruation and using a calendar, the fact that the person may have a special health care need doesn't change. That they should be tracking their own period. And then when people get up to around age fourteen or 16, we ask that they bring some questions in every visit. What is it that you want from your medical team today? What are your priorities? We ask that they initiate dialogue to get their parents invited out of the room. One of the best ways to facilitate conversations with your physician is about private matters such as mental health issues or substance use or sexual activity, et cetera or reproductive health care in general terms is to have your parents invited out of the room. And so I would insist that by age 13 that the parent routinely be invited out of the room so some boundaries can start be established and we don't try the to preclude parent participation. 100 percent of the teens in our clinic starting at about age 12, some part of the interview is conducted with the parent out of the room. So I think the youth and the parent ought to start talking about these issues and the expectation should be the parent is invited out of room. We also want -- would like questions about cigarettes, alcohol and other drug use and how that's going to affect the medical condition, how it could affect medications, potentially be dangerous with certain types of medication. That's the kind of information that should be forthcoming from the health care provider or the physician, but the teen may be embarrassed to ask those with the parent out of the room. So first start -- invite the parents out of the room and they can start to address some of these specific questions. >> CLAIRE: Okay, thank you. Mary t same question for you. >> MARY: Anna had mentioned earlier the part about when someone reaches the age of 18, definitely check eligibility for SSI. Actually, the month the individual turns 18 is the best time to check that eligibility because the teen has the resources and (inaudible). Also in most states, they have waiver programs that typically differentiate between youth and adults. So if someone is, say, 17 and the waiver program begins at 18 or someone is 20 and a waiver starts at 21, you definitely want to see what waiver benefits are available in your state and begin preparing to apply for those because typically they are a lot more extensive long term services and supports that can allow someone to remain in the community. >> CLAIRE: Thank you. This is going to be our final question before we begin taking questions from participants. And this last question is for Dr. H. What are the benefits of changing from a pediatrician to a general practitioner? >> DR. H.: Well, I would add in addition to a general practitioner and internal medicine physician, but somebody who practices adult medicine. One of the obvious benefits is that you don't have to sit in the same waiting room with kids who are playing with tinker toys and, you know, playing with Leggos, et cetera. There has to be a place where you feel comfortable. So first of all when you start going to an adult internal medicine or family practice or general practitioner's office, the decor is better. It's more suited to your age. Everybody I've known who has gone through this transition is tired of being in the waiting room with babies and kids. So, number one, there is that step. Second of all, pediatricians and adult doctors think about disease prevention in terms of the diseases that tend to affect their patient population. So as you start being taken care of by an adult physician, for instance, they are going to start paying attention to coronary artery disease or risks of heart attack and stroke. I'm a pediatrician, my specialty is in adolescent medicine. It's not that we don't pay attention to those things, but adult physicians are trained to do it say on a more daily basis and more a part of primary care. So the adult diseases like heart attacks and strokes routine screening starts occurring by adult physicians which maybe isn't routine for pediatricians. Second of all, checking for cancer. Adult doctors are checking for cancer more often. It does occur in kids, but different kinds of cancer start to be manifest in adulthood. So one specific cancer is cervical cancer, the young women who are having intercourse get exposed to the human papilloma virus. If you go to an adult physician, getting Pap smears is routine. If you go to a pediatrician, that sort of thing isn't routine. So the way you are approached in the office changes. And also the primary care preventive types of diseases that they look for also change in adulthood and I think that that's an improvement. >> CLAIRE: Okay, thank you. And the same question for Mary. >> MARY: Well, I'd just like to add that I think by transitioning from a pediatrician to an adult primary care physician, just height evens one's independence. It's transitioning, you know, from just being able to make your own decisions and it's what we all want is our independence and that will height een that. >> CLAIRE: Thank you so much speakers. That ends the first portion of our call. We'll now begin the second portion of our call where you the participants can ask questions to our seven speakers. Please state your name and if you have a question for a specific person, please state that person's name so we know who you want to answer your question. Again, to recap the speaker's today are Kara Sheridan, Tim Moore, Stephanie Orlando, Patti Hackett, Mary Matson, Dr. Al Hergenroeder and Anna Johnston. And now I'm going to go ahead and turn the call over to the ILRU operator to explain what you guys need to do to phone in your questions. >> OPERATOR: Thank you. At this time we would like to turn the conference over for questions and if you would, please press the star key followed by the 1 key on your touch tone phone if you would like to ask a question. Questions will be taken in the order in which they are received and if at any time you would like to remove yourself from the questioning queue, press star 2. Again, any time during the questioning session press star 1 to ask a question. And our first question comes from Peter squire. >> CALLER: Hello. Hi, this is (inaudible). I have a question concerning sort of picking or determining or locating a primary care or a physician. Sometimes I've had challenges trying to determine how good they are going to be. I was wondering what individuals typically do to locate a doctor and then how they go about, you know, directing that doctor for a long-term care. Specifically like do you go see a couple of doctors or do you just go visit a first one and have checklist. And decide what kind of things would you do? Thank you. >> PATTI: This is Patti and I'll tell you what our family did. We had different types of learning styles and lifestyle needs. So we figured out as a family member, all of us, we relocated many times and we figured out what we wanted in a physician, what would be our matches. So for me I needed somebody who would reinforce verbal and written material because I have a learning disability. For my son, he wanted to make sure there be little to none prejudice and willingness to accept his complex issues. And for our other family members there were some other mental health issues that also wanted to be addressed. So we independently then would make an appointment to interview the physicians coming in with what we are looking for in a physician. Is tips this worked and sometimes it didn't. It was a trial period. Sometimes we made a match right away and sometimes what we thought was a match in certain circumstances we thought this isn't working. We also shared with the physician what wasn't working and ask them for recommendations. I found the very best way to find a have physicians that really meet your needs is to ask around. Ask your friends with similar interests. Ask mental health counselors I found to be very good social workers were wonderful. People who really know you and know the field. In the adult medicine side they know each other because they socialize I found our ac you funk tourist to be very (inaudible). You'll have to pay for the interview time because that won't be covered by insurance. But it's well worth the money. >> CLAIRE: Thank you. We'll take our next question from our webcast. So Beth do we have a question? >> BETH: We have a question from Eileen. If a youth with a primary diagnosis of a mental health disorder and also has medical problems such as diabetes, how can you find transitioning services to provide housing for independent living where mental health facilities will not provide the medical care? >> DR. H.: This is Dr. Hergenroeder. That's a tough question. It's a very good question. What I find -- let me talk from our own experience. We have a very large diabetes service here and we try to work closely with the diabetes service and they with us so that if a youth or young adult who has diabetes, Type I, I presume, but we also see a lot of Type II and has mental health issues, a lot of care -- the only way we have been able to figure this out is by care coordination and case management. It's very labor intensive, but trying to find mental health providers and primary care providers who are located in similar locations and maybe more importantly who talk to each other regularly. So I think the communication piece is very important to find providers who are used to working with each other. So if an adolescent has Type I die beet ease and they are having problems the service will oftentimes refer them to us and likewise we would always refer somebody with diabetes to a service and try to communicate regularly. And sometimes for fairly complex problems we have to block off an hour and have the important people in the room, the patient, the family, the adolescent medicine team, the nurses, mental health providers et cetera. Sort of plan ever try months or six months or a year what is the best plan and how am I going to carry this through and what are some of the obstacles. >> STEPHANIE: This is Stephanie. I just wanted to add on to that, too, that really housing should be making accommodations for other disabilities which if you do need to utilize an advocate to make sure that they do that. It's the best way to go and often your state office of mental health will have paid advocates (inaudible). But those are around and it is because of some of the medications right now that are prescribed for mental health issues, some of them are now -- studies are coming out that they increase the likelihood of diabetes. So it's becoming more and more frequent that this is occurring. So I would definitely check with an advocate because as I said this is coming up more and more often and there could be some things that can be done within housing to make sure that that accommodation is met. >> CLAIRE: Operator, we'll take the next question. >> OPERATOR: Thank you our next question comes from Amy. >> CALLER: Hi. I have a really complex question, but I'll try to make it short. The children's hospital Austin is trying to take me off of services at age 20, but they can't give me any adult physicians that will take Medicaid because there aren't any. So is there anyone else in other states that have kind of banded together to try to fix this problem? Either through the physicians themselves or through the legislature? And I'm looking for (inaudible). >> Amy, what state are you in? >> CALLER: Texas. >> DR. H.: No, I have to listen and see what other people propose because this -- to me, the simple answer is they can't -- well, I have to be careful here. From my perspective is they can't make you leave the practice. There has to be some transition process. Now, if they say automatically there is some patient that this children's hospital can't be seen after a certain age, then that may be their -- that may be their policy, but I would argue that that's fine as long as some successful transition planning as occurred. There has to be -- I don't think necessarily you want to tell everybody what your specific diagnosis is, but there has to be some physicians who can provide some care in this transition. >> CALLER: I have cerebral palsy and my specialty care providers haven't given me much help in finding adult doctors at all. The hospital won't see me. I can't even get emergency care at this point. >> DR. H.: You know what -- there is an attorney in Houston. Her name is -- am I allowed to talk -- I don't want to advertise for this person's practice, but she's been speaking at our conference for seven years. She is an absolute -- she's about as good as it gets when providing assistance in this regard. I think I'd get an attorney. And can I give her name? I'm asking the moderators. >> CLAIRE: This cd moderator. My suggestion would be if you can send us that information via E-mail, we can put it up on our post or get it to the person you're talking to. >> DR. H.: You bet. I'll do that. >> PATTI: This is Patti. One suggestion for you -- I couldn't find the answer directly. I tried to back into it. Who else might have this information. So I would check with vocational rehabilitation because many times they pay for medical will workups and oftentimes it's through a Medicaid provider. So you may want to ask them for a list of Medicaid doctors. They know that. The other people might know it, too, are the people at the Social Security administration. And the other ones that I didn't realize they can become really good alleys are the elder affairs, the office of disability and senior health. They have a flock of information. They've never thought about our population between the ages of 20 and 30 as potential clients, but go to places that also keep these lists and that's issue one. And issue two is I always go back do what can we do to maintain private health insurance, and either by working part time if possible or maintaining and expanding on family plans. But there is a growing movement around children's hospitals for exit plans for patients because there is not enough beds for the generation coming up. So they just have to say goodbye. But Al is right, they should be saying goodbye with a little more support. Again, go back to row indication Al rehab and check elder affairs and check Social Security administration office all of who may have a list of Medicaid professionals. The other issue on medical association would be the academy of family practice that each state has an association. So I would ask them to see if they maintain a listing of physicians that have Medicaid. It may mean driving. And if you dove to drive, keep in mind your mileage a Texas deductible. >> KARA: Our foundation -- the OIS have developed a really good clearinghouse because we have the same problem as a lot of times the pediatric specialty so my doctors when I was transitioning out and I was moving out of state to go to college, so they were really clueless as to who the tell me and when I got the Medicaid list, I probably called 15 places and they had no idea who to send me for my condition. So if you contact depending on your disability specific organization, if you contact them sometimes they have that information. >> CLAIRE: Thanks, Kara. >> Texas does have a statute for adult disabled dependent care. So if you still have a relationship with your family and they still maintain a family plan, perhaps there is other brothers or sisters, you can have your parents ask their benefits department, is there a possibility you can be put back on the plan. The danger of this one is once you're off, you're off, but you never know, sometimes employers are able to work something out. It's worth a try. >> CALLER: Okay, thank you. >> CLAIRE: Beth, we'll take our next webcast question. >> BETH: There aren't any more web questions right now. >> CLAIRE: Operator, we'll take the next question. >> OPERATOR: Our next question comes from Jessica. >> CALLER: Hello. My name is Jessica and I have a question about transportation. If a health care provider has a lot of customers who are disabled, do they have a policy that provides transportation or is that a separate service you'd have to have access to in order to make sure you're up to date with your health care? That's it. >> if I understand the question correctly, ire wondering if a provider has a large population of people, do they then provide a shuttle service? >> CALLER: Yes. >> or something. I have heard of some things like that but I don't think that's going to be for a patient at all practices. I know if you have a Medicaid card they will provide some funding support on transportation. I had a girlfriend who was my mentor so I would learn about different ways to think differently or to get services for my son. And what she would do is always find physicians near shopping malls because she found it was easier to arrange paratransits so she could go to the doctor's visit and pop over to the mall. You may need to get creative instead of just a one stop shop. >> CALLER: Okay, thank you. >> CLAIRE: Operator, our next question. >> OPERATOR: Our next question comes from Trevor. >> CALLER: And the question that I'm about to ask is, is the situation that I'm dealing with physically right now and what should disabled students do to get health care for their needs if their (inaudible) are too far forward and their feet are flat and what should disabled students do to get health care for that -- if they're in that situation as soon and as fast as possible? >> KARA: Trevor, this is Kara. Not specifically for feet, but whenever I've had any kind of issue that's kind of outside the realm of other things I've received treatment for, I a lot of times talk to my primary care physician and I ask for a referral and make sure everything is in line before -- because with something like that you probably need to go to a podiatrist or someone who specializes in those issues, but even though it makes it a little more complicated I always go first to my primary care physician to make sure I have the referral and everything in line so that it will be covered. And then they can also tell me who I need to go to because just opening the phone book once you figure out you need a podiatrist is a daunting task. So that's what I would recommend. >> CLAIRE: Operator, next question. >> OPERATOR: Our next question comes from Kristin Jones. >> CALLER: Hi, my name is Kristin. I know when I first became disabled and I was on Medicaid, I was in charge of having to find my own providers. It's similar to what Amy was talking about trying to find providers that accepted Medicaid but at the same time trying to find specialists -- it's a full-time job almost. And I know that there are programs out there that have -- I think it's almost like private insurance companies that have case managers. Is that like offered in every state? Something like that where you can get it through Medicaid? >> MARY: Kristin, this is Mary. Again, as I said at the beginning, a lot of states are looking at enrolling their Medicaid, SSI consumers into managed care and managed care you do receive that service coordinator/case manager. They are the ones that assist you with finding a primary care physician, specialist, things of that nature. Again, each state is different and some of them have the managed care organizations, some have another form of managed care called TCCM, which is your -- it's like a fee for service primary care case management for essentially your PCP is your doctor that is your case manager or gatekeeper, but that's going to depend on each individual state. >> CALLER: Thanks. >> CLAIRE: to we have any web questions at this time? >> BETH: No, no more E-mail questions. >> OPERATOR: Our next question comes from Elizabeth. >> CALLER: Hi everyone. My question is specifically for Dr. H. In the beginning when you listed your 11 problems, one of the things that you mentioned was a lack of specialists. And I was just curious what your thoughts were on how us as youth leaders could assist in promoting that and helping the next generation of doctors possibly consider new fields. >> DR. H.: That's a great question. I think that one of the ways that I would suggest would be working through your local hospital or your local general hospital or children's hospital to form a youth advisory board. And being a youth advisory board, one of the activities I suggest people do would be to take one specialty at a time and see who in the area has an interest in taking care of a given condition. Let's just say, for instance, a person has a seizure disorder. Try to identify -- get the hospital to help maybe provide some in-kind services whether it's mail outs or phone calls to try to find out physicians in the area who are interested in helping with these services. So, for instance, what we've done at Texas Children's Hospital, we've put together resource lists and we've been more successful in some specialties and not so successful in others where we literally by word of mouth or any mechanism where we can, we have contacted physicians who are interested in taking care of Type II diabetes or Type I diabetes. And we've asked for their permission to list their name and phone number and contact information and we've put together -- these are called fact sheets. We've put together this resource fact sheet list and we'll put this up on our website. So anybody who has diabetes who is trying to transition to adult-based care has that resource list. So I would think going through the local hospital, forming a youth advisory board, and try to compel the hospital, the administration, the physicians however you want to approach this problem, that this is a vital resource that youth and young adults with special needs need. Take one discipline at a time or one specialty at a time. I think that kind of advocacy would be well received. Certainly would be well received here. >> CLAIRE: Thank you. >> OPERATOR: if you would like to ask a question, please press the star key followed by the 1 key on your touch tone phone now. Our next question comes from Trevor. >> CALLER: Some parents don't care about their disabled children's health, whether it is mental or physical and what must we do for those disabled kids? >> I think we need to identify a champion. We recognize some families are going to have more problems than others, and we know young people are in a school setting more often than any other place in the community. So if we can work with teachers to recognize students that perhaps need more supports and then find community alleys, I think that would be helpful. I recognize -- we may think families aren't interested, but oftentimes it's because of other stressors that are just above and beyond they just can't see the daylight from all the stresses around. If we find ways to figure out how to build capacity for families, I think we can get better with youth. There are some families that will never make it to the plate. What can we do with that? I think having youth out and visible in the community settings, school, recreation, there is lots of places that they can get support and they can find their mentor or somebody who cares enough about them to be able to be a peer, peer support. That's where youth leaders are going to be critical. >> CLAIRE: Operator, next question. >> OPERATOR: We have no more questions. >> CLAIRE: Okay. Do we have any other web questions on the floor, Beth? >> BETH: No, no more questions. >> CLAIRE: Okay. I guess that will wrap up our call for today. We'd like to let you guys know that you can visit our webcast and visit any resources that our seven speakers gave us today. So if you visit our website in the next couple of days you'll be able to access any of that. On behalf of the National Youth Leadership Network, I'd like to thank the participants and the speakers for taking time out of their busy schedules. We also wanted -- want to thank ILRU for their support and please join us for our next teleconference call which will be in October. Again, please visit our website and see all the information that our speakers have given us and thank you and good night to everybody.