SEPTEMBER 12, 2006 VCU WEBCAST Captioning Provided By: Caption First, Inc. >> TOM GLOSS: Thank you, Teri. Good to be here with you today. I want to welcome everyone. And add to Teri's introduction, I come to the consulting role after a 29-year career with the Federal Government. I did work for 23 years with the Social Security Administration at all levels of the disability process. And I did work with SSI re-determinations and at the beginning of my career I started with Social Security in 1974. I have a good feel for the population that you are working with and commend you for the work that you are doing. We really appreciate it. What's health got to do with transition? Really everything. We are excited about bringing health as an issue into the transition arena. If you look at this first slide, you will see the health and ready to work Website, WWW.hrtw.org. And we want to caution you, if you do a search for HRTW by itself, you may end up with hormone replacement therapy. You don't want to be there. You want to search for Healthy and Ready to Work or go specifically to our site. The Healthy and Ready to Work initiative began in 1996, to encourage the State Title V, children with special healthcare needs programs, to put an emphasis on children and youth with special healthcare needs in transition to adulthood. The Healthy and Ready to Work National Resource Center is a federally funded cooperative agreement housed in the main Department of Health and Human Services under the direction of Tony Wall, the director of children with special healthcare needs program. His goal is provide leadership, resources and knowledge to improve health, community participation, productivity and life for use in transition. You can learn more about the Healthy and Ready to Work initiatives, both past efforts and current activities, at the Website. We believe that health impacts all aspects of life. And as you think about it, success in the classroom, the community, on the job, requires that young people are healthy. It's a kind of common sense thing. To do that, young people need an increased understanding of their health issues. They need to participate in healthcare decisions, and ultimately manage their own health and wellness. Today we are going to be talking about a few things. We will start with definitions. We are going to look at federal initiatives and mandates, and health insurance options. Dr. White will talk about health and wellness, advice with hindsight or lessons learned from our past activities, and what we call take-away messages. Let's start with some definitions. First when we are talking about health, we really mean more than just a payer of services. But in the health arena, the population of young people with disabilities that you know -- excuse me, when we are talking about health, we are talking about wellness, and that young people need to work to maintain their health, to be healthy, and to improve their health status. It's hard to be successful in school or at work if you are having continuous inpatient episodes. For healthcare services, the idea is that young people should be getting access to healthcare through a medical home, which we are going to talk more about the medical home concept in a few minutes. And also, young people with complex medical conditions, especially need care coordination. Then we are going to talk about health insurance. And here, we have public and private options for health insurance. And in the public arena, SSI usually is a gateway to Medicaid, and if the young person has worked and becomes entitled to SSDI benefits or Title II Social Security benefits, they can often become eligible for Medicare. In the private arena, we are talking about family, health plans, or self-help plans -- self-health plans. Working with a SSI population, the Social Security Administration refers to those individuals as disabled. But this same population may be known by other terminology in the different arenas. In the health world, young people are often called children or youth with special healthcare needs. But in the education world, it may be youth with disability that impacts learning in the IEP field, or youth with health impairment that needs support in the 504 plans. In the Americans with Disabilities Act, in Section 504 of the VR Act, these populations may be referred to as having a disability, and/or health impairment. So, who are youth, children and youth with special healthcare needs? This is a big definition. But children and youth with special healthcare needs are those who have or are at increased risk for a chronic physical developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. This is a definition by the Maternal Child Health Bureau, and it's a broader definition of a disability than that used by Social Security and SSI. We have also included in this definition section of our presentation some data. The Maternal Child Health Bureau has research that shows nationwide, about 13 percent of children under the age of 18 meet this definition of children youth with special healthcare needs. And about almost a million of children and youth are receiving services through the State Title V children and with special healthcare needs programs. And compare that to the SSI population of just over a million, who are up to age 18 who are receiving SSI benefits. We know there is overlap between these two populations. But we don't have a firm number of just how many there are. We have also included the number of SSI recipients who work. That is a small number, as you can see on this slide, youth and young adults under 18, slightly over 3,000 who are reporting earnings, and about 32,000 in the 18-21 category, and just under 80,000 in the 22-29 category. Let's look at the federal initiatives and mandates. And what we have been talking about here are those that include health. First, the president's new freedom initiative, which charged the Health Resources and Services Administration and Maternal Child Health Bureau with developing and implementing a community-based service system. That should include comprehensive family-centered care, affordable insurance, early and continuous screenings for special healthcare needs, and transition services to adulthood, and by those transition services we mean health related. Next, the Surgeon General issued a call for action in 2005 to improve the health and wellness of persons with disabilities. And in that call for action, he includes, persons with disabilities can lead long healthy productive lives. Second, healthcare providers have knowledge and tools to treat the whole person with a disability with dignity. It should promote good health by developing and maintaining healthy lifestyles. And accessible healthcare and support services would promote independence for persons with disabilities. And these four concepts fit very well with the new freedom initiative and what we propose for youth in transition. The next source of revenue or initiative or mandate on the federal side is the State Title V children with special healthcare needs block grant. States receive money in a block grant for health related programs, including those serving children and youth with special healthcare needs. A few years back, they started tying the block grant money to performance measures which we think is a good idea. And there are actually six national performance measures tied to children with special healthcare needs. They are screening, family involvement, the medical home, health insurance, community services, and transition. Each state would set its own numerical or percentage measure, and we are not going to talk about those. You can find those if you go to the State Title V Website. But what we are going to talk about are some of the kinds of things that states are doing in several of these areas in relation to youth in transition. Obviously, the states are doing much more, but here is a few things, again in relation to transition. States should be screening children with and youth with special healthcare needs for secondary disability, which is significant for many of the SSI population with whom you are working, and can have a tremendous impact on the ability to successfully transition to adult life and work. They are also looking for aging and deterioration issues in these youth. The second performance measure is concerning family. We know family involvement is very important to youth in their health issues, and in transition. It's important for the youth to have a high aspiration, to believe that they can succeed in education and employment and other goals, because we know that these youth want to be just like every other kid. We also believe it's important for families to have high expectations for the young people. They need to believe that their child can be successful in making the transition. And that also goes to educators and mentors and other adults who are around the young people. Finally, this issue of being healthy, how to stay well for longer periods of time. I told you that we would come back to the medical home issue. I want to stress that this concept, we are not talking about a building or a house or a hospital, when we talk about medical home. Rather, we are talking about an approach put forth by the American Academy of Pediatrics, and the maternal and child health bureau to provide comprehensive primary care. The states are trying to increase the numbers of children and youth with special healthcare needs who have access to this medical home approach. Youth with special healthcare needs in transition, the medical home concept includes the transfer from pediatric to adult healthcare providers. Actually, consensus statement was signed a few years ago by representatives of the major medical organizations, endorsing this concept. And the real issue here is that the transition would be a natural progression, thought out and planned for. Not a surprise. All of a sudden at 18, you are not seeing your pediatrician anymore, get out and go to somebody else. This is something that would be thought out. It is part of the medical home for youth and transition, it's crucial to have a portable medical summary as a tool to ensure the best medical care, whether that young person is away at school, on the job or just out and about. The portable medical summary which you should have as a handout can be an effective tool when the person needs to provide medical documentation or any kinds of emergency situation. It's a one-page reference sheet. It should have all their pertinent information, contact information, summary of prioritizing their basic health issues, their medications, their treating physician, and it can be used in a number of different instances, whether that person is using as a communication tool or a learning tool or in an emergency situation. Moving to our next topic: Health insurance options. States are measuring the number of children and youth with special healthcare needs who have health insurance and are trying to improve the numbers. We also feel that this is such an important issue, that we want to make it its own section in the presentation. The best thing we can say about health insurance for youth in transition is to plan ahead. While it's fairly common for children to have public or private health insurance, as this slide shows, twice as many adults ages 20 to 29 have no health insurance as those ages 30 to 64. Really, whether or not the individual has a disability, youth are at increased risk for falling into the pit of no insurance. As a slide show, two out of five college graduates, the first year after graduation don't have health insurance. Half of high school graduates who don't go on to college don't have health insurance, and 40 percent of all age 19 to 29 are uninsured during the year. I know that is true for my own children. We believe it's important to prepare for the realities of healthcare funding. When working with youth and families it's crucial to keep in mind those age milestones. Is the young person going to age out of their family's health insurance plan? If they are covered under Medicaid, will the EPSDT program pay for a certain service or diagnostic procedure before they reach a certain age? Is that something you can help the family schedule before the young person comes off that program? It's all about timing often. We also know that when young people get their first jobs, whether it's a temporary job or an entry level job, it may not bring access to health insurance, or if it does, the premium may be too high to make it unaffordable. Then there is the jeopardy of desiring to work, and being independent, possibly losing insurance under a parents' plan or losing SSI benefits including access to Medicaid. You probably are well aware that SSI is the gateway to Medicaid, and that it's even automatic in all but eleven states. But are you aware that through SSI, through a medical determination by the Social Security Administration, that a person can actually send entitlement to insurance through COBRA? If the person is found to be disabled under the Social Security definition of disability, they can have an eleven-month extension of their COBRA benefits. That is something a lot of people may not be aware of, and even in the Social Security office they may not be aware of it. You can bring that out that there is a provision that the person can have a medical determination. They don't need to meet the non-disability factors. They are not applying necessarily for a benefit. But if they are found to be disabled, it can extend the length of access to insurance through COBRA. Then in the public side, in terms of Medicaid, we have a few different situations that the youth can come under. One is if they have been a SSI recipient from childhood, and at age 18 they can go through the re-determination, and still qualify, and keep their Medicaid coverage. You can also have a situation where the young person has been getting SSI, but at age 18, they either don't pass the redetermination for eligibility as adult, under the adult definition, or the financial qualifications are not met, and they can lose the access to Medicaid. And then conversely, you can have a situation where because the family income and deeming the child may not have been eligible for Medicaid even though they had the disability, the medical determination part, so at age 18 they can come on as a new recipient and get access to Medicaid at that point. Then in 2005, we have a recent change, with the extension of the student earned income exclusion, which may allow some additional individuals under the age of 22 to access SSI and Medicaid, who weren't eligible before. So this is a new procedure that you should check out, the link is provided on the slide. Always remember this SSI is a gateway to Medicaid. Next, private health insurance. Often, the best way is for the young person to stay on their parents' plans. And more than 40 states allow adult disabled department child category for healthcare plans in their state. Many plans also have a student status. And the age eligibility limit varies. That's always something to check out with the families you are working with, if the young person is still a student, can they stay on their parents' plan? Some states are looking at these issues. For example, New Jersey is allowing youth to stay on a family plan until age 30, regardless of what the diagnosis is. ERISA plans can also change age limitations. The youth also have options in terms of paying for health insurance, which may include COBRA. If they are going to come off the plan, they can choose to continue to pay, and COBRA premiums are often quite high. But that is an option. If they are going to college, there may be a student plan available through the college. If they have a job, there may be a group plan available through an employer, and those are often good options, because large group plans may not have exclusions or waiting periods that a private plan would have. Then there are self-pay single plans. Again, may or may not be expensive. But another option to explore. Then of course, the ticket to work and Medicaid buy-in where that is appropriate. That is all that I have for you today. I'm going to turn the presentation over to Dr. White. And I look forward to your questions during the chat room. Thank you. >> DR. PATIENCE WHITE: Good afternoon. I'm so pleased to be here and sharing with you some of the information that we thought would be helpful to you every day as you are working hard with these youth, and as Tom said, we are appreciative of what you are doing. Today I'm going to tell you about health and wellness, and I would like to move right along here, and show you a little bit that I really see myself as an ally. I think it's very important that you look to the physicians to help you through this very complicated process with this young person. I see, I can be helpful to you developing a transition plan around wellness, disability care, helping them be productive, and help you to think through some of the insurance issues. I will help you identify medical supports, where they need them at school, around the campus and particularly I'm interested in helping you think about emergency and inpatient planning and events as they happen so we are not all caught by surprise on this. I want to be helping this young person think beyond their disability, think about being well. As you all know, if we don't feel well, we don't actually do as well as we could. We aren't our best. You want people to feel well and not be focusing on their health as they are trying to do many other things that you are working with them to become a productive adult. You want to help, I want to help you think about accessing for modifications. What the work load ought to be particularly in their post secondary education, what equipment, assistive technology would be helpful there. I want to work with you, but I have to remember that with the new law, when a young person turns 18, their privacy issues come up with families as well as people that are very well-meaning, wanting to get access to some of the information. So if you call me, I'm going to say, the young person may or may not have released for me to speak to you. I find that hard, because people do get angry, because they are all wanting to do the right thing. But we have to remember the privacy laws are extremely tight here under the HIPAA legislation. Part of this, I think, is helping people to think about how to give consent. That is a really hot issue in the medical arena. If they cannot actually sign, people ought to be thinking about getting a signature stamp. This has been helpful. And think about that beforehand. You want to move the young person in their thought process. How to make an informed decision, going from a, they are sitting there with parents negotiating and you are talking about things, to actually consent. That means they really know what is going on, and they consent to whatever it is that you are talking about, surgery or a new treatment, however you are thinking about this. It's important to think about the levels of support, as a person is trying to become an informed decision-maker. Have somebody who is a health surrogate. I tell people that don't have a disability, you need somebody there to listen to what the medical system is saying to you. So you can think it through later if you need to. There is no pressure necessarily to make decisions right away, in many of the instances. If we are talking about somebody who people feel perhaps couldn't become a full consenting person, you have to think about guardianship. Think about it in, it can be limited and full. Thinking this through particularly around health is much, is needed and we have to think about this as we move forward. I want to move on here, and think about some of the advice with hindsight. I was involved in a project at the readiness center for 15 years that worked with young people with disabilities and who were on Social Security. I'd like to share with you some of my thoughts. Also as I've been both a pediatrician and internist, as people move from one arena to the other. As you are sitting there, how many of you are still seeing your pediatrician? I'm sure everybody would say, not me! I'm not seeing a pediatrician. I hope you are seeing an internist though. I bet you are taking care of your health. But it's interesting that young people with disabilities often are still seeing their pediatrician into their mid 20s and sometimes 30s. The process, the cultural change of moving from one system to another is a shock. Most people with disabilities stop seeing their pediatrician, don't see a doctor for a long time and then reappear when they need health services. But a young person with a disability needs continuity of care. They need to take care of their health throughout this time. They have to make a clear movement from one system to the other. Pediatric services by the nature of them are family-driven. They are talking to the parents, the young person is sitting there, sometimes listening, and sometimes not, as they plan their healthcare. The adult providers due to all sorts of issues around privacy, and talking directly to the person, wants to talk directly to the young person, as a matter of fact may not allow parents in the room. This is a big shock to everybody. I want to go through a table here that is coming up so you can begin to think about this, because most people, adults take this for granted. You are moving from one system to the other, literally one day in one system and in the next day you are in the other system. You have to think about this and plan for it as you are going. So parents and kids find themselves basically between two medical worlds. And sometimes they don't communicate as well as they should. Here is this table. I don't mean for it to be complicated. I think it's helpful to think about the issue, which I have there on the left-hand side, talking about whether the focus, the approach, decision-making and so forth. I contrasted pediatric to adults. I've highlighted things that it's helpful to help people as they are looking at this issue, what do I need to do to prepare for that adult setting? The focus now becomes the individual. As you are preparing, the young person needs to decide what they need to discuss with their physician. Making a list is helpful. Think about shared decision-making. The decisions were made by the parents. You want to start the process of having the young person involved, because the person who is going to make that decision, the adult setting, is the person with the illness. The parents necessarily may not make that decision. They can be consulted by the young person, clearly. They probably should do that. But they are the person that is going to sign on the dotted line. What's hard, a lot of people don't do what people say they should do. That's non-adherence. If you are going to take that medicine, in the pediatric arena, they tolerate it a little more. When you are in the adult arena, the doctor sees themselves as a consultant to you. We think you should take these medications for your ADHD or your seizure disorder. But the person who is going to do it is the person who gets up every day and has that problem. Nobody is going to be there to check with you. Back on the slide, looking further, care provision. The other thing a shock for families a pediatric systems are interdisciplinary. Clinics run at the same day. You are helped through the process. In the adult arena, you are expected to do it. You may have to go to the gastroenterologist on a different day that you see the ophthalmologist or neurologist. That is hard. You are taking more time off of work. You have to orchestrate this problem. These things along with this, the pediatricians see fewer people with issues that have disabilities, adults see many of them. The pressure time is much greater in the adult arena. That frustrates people as they move into that area. How about that consensus statement that Tom mentioned earlier? This is a wonderful thing that is available to you as you are beginning to interface with the variety of physicians that you are dealing with, so the largest associations that physicians belong to, American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians, and American Society of Internal Medicine, that covers about 80 percent of physicians out there. Their societies have signed on to an important consensus statement. You can see it. You want physicians to understand the rationale for transition. So that family doctor though they see them their whole life have to be thinking about these issues, have knowledge and skills to facilitate that process of transition. Know if, how and when the transfer is indicated. You have to plan for this. When will it happen? Don't catch people by surprise. As Tom mentioned, I don't want people to feel left out. They are saying, I'm growing up, this is an important thing. It's a natural process. Maintain the medical summary. I get people involved early. Let's do that together if they have the capability. The written transition plan by 14, that means we are all thinking about it. That age of majority is 18. Many people transfer healthcare at that time, because they are going away from home. But sometimes they transfer earlier. What services, who is going to provide them and how will they be financed? Let's talk about the lessons learned. I want to tell you a surprise to me as a physician. I was working with this project, as we looked at 12 to 18-year-olds. I'm looking at younger folks than many of the people you are working with. They had a SSI qualifying diagnosis. Everybody was on SSI. That wasn't necessarily their active problem. 40 percent had other issues for which they are taking medications and need to interface with the healthcare system. That is something you ought to think about. Without those medications, they are not going to be successful, even though these medications are not related to the original qualifying diagnosis. As you can see here, asthma, obesity, diabetes, emotional issues, many people are on medications. If you think to ask, the first thing to ask is, are you on prescription medication? That will give you the heads up that they need a careful interface with the system. In our system we learned that 13-year-olds were more engaged. Those people when we asked, do you want to be involved? They said yes. 14-year- olds, less. 15 and 16-year-olds, not at all. You have a golden moment to think about transition around 12 to 13. Those are really important things. They are more engaged. They want to be involved in the process longer. When we look at measurements, they had less differences than their age made without disabilities. They had to do less work to keep them on par with other folks their age as they move through the process. They made much more in significant improvements in all the measurements we chose to do. Questionnaires, when they had started at the age and we picked them up much later. I'd like you to think about starting early in this process. What did it turn out for us? If you were for three years in our program and started young, you had more education, more paid work experience, you as the young person involved thought you had better health. I might look at them and say I'm not sure their health is much better but the youth thought it was. Therefore, they were more engaged and more interested in their health. They had more likely made the transition in the medical system. Even though we didn't focus on it. We were trying to help them get into work. What you are doing is extremely important to help them think about this, and then they are likely to transition into the adult system. What are some of the lessons we learned? It was a surprise to me that the first thing we did, though we were focused as you are on the job at hand, to get them into the workplace, have them think about their benefits, the first thing you need to think about is, what do they need? Sometimes we found surprising things. They wanted a pair of glasses. They couldn't read anything that you gave them. Ask what their immediate need is. And sometimes it's a health issue. I've run out of my medicine. Ask what that immediate need is. If you fill that need, you start off on a better place, even though it's not where you thought you were going to start. Be flexible. Our program had advisors. We had an employer advisory board telling us what we should be thinking about. Sometimes we had to change our approach. They were telling us they were not where they wanted them to be when they were coming for the job. Culturally confident. It was important that we had staff that showed the diversity of the people we were working with. I can't tell you how important that was. It made people more interested in coming. Honor and understand those beliefs. People have certain beliefs, whether it's religious beliefs or health beliefs or anything about the workplace, that if you understand those, and work with them, they are going to be much more interested in working with you in the direction that you are trying to support them towards. Program advisors. I must admit, youth needed, particularly our inner city African-American and Hispanic wonderful kids, need help in how they should be talking to employers. That was a surprise to me. There is a culture here of the workplace that is really very different. They need to think about that as well as you, I think, should help them think about that. You become a life coach here. They look at you that way. As a physician I have people inviting me to all sorts of things. When they graduate out of their G.E.D. or whatever, I'd actually never thought about that but I became a life coach. And you are that to them too, in a variety of things that you never thought you were going to be called on to do. And providing training to understand people's roles. Everybody's role changes. My role changes, as a physician. Family's role changes and siblings' roles change and young person's role changes. If you work with a young person and leave the family behind, they are pulling that young person back. You need to say you are going to move, parents, from being somebody that is doing everything to somebody that is a consultant. What is a consultant? You respond when asked. That is a shock to the family. But you need to work with them as they move through that. Building trust, you know that. The number one thing people come to me, I'm going to lose my benefits, I don't want to get involved. You know this. I want to let you know that comes to the fore with me too as a physician. Medical, wellness affects everything. I'm interested in teaching you skills, how to find adult providers, how to manage their health, how to disclose their disability, health issues and how to ask for accommodations. Having you support that is helpful as we are working with them. I'm your ally here. What are our take-away messages here? I want you to remember wellness; what is their baseline, when do they feel best? You ought to know that. Remember healthcare. You want them to have primary care to think about wellness. Refer people if they have secondary conditions for health. How to manage it. Make sure you have a portable medical summary. You have a great tool in front of you. Think about if they have prescription medications, that interfacing with the health system is paramount and an issue that you need to think about, so we can be sure that people get the kind of medication they need to perform well at the jobs you are asking them to do. On the federal members, there are policies and practices that support this. You have heard them all from Tom beautifully. Remember that this often, things in the federal level and state level, and as I say, I want to be your ally in this process. Don't forget us as we move forward. I would also like to remind you that there is a Title V, national performance measures. So there is one out there that everybody is focused on, that youth with special healthcare needs will receive the services necessary to make transitions to all aspects of adult life, including healthcare, work and independence. It's there to help you help these youth move through this process. I want to thank you very much for attending this, and remind you that we are looking forward to your questions in the chat room. We are lucky to have Patti Hackett joining us, the co- director of the Healthy and Ready to Work National Resource Center, and she will be in the chat room as well. We are looking forward to your questions. And at the end of this, there are several slides about resources. Please, I hope you will look them up. I think they will be very helpful as you move forward in this process. Thank you so much. ****** 1