Ninth Annual Maternal and Child Health Epidemiology Conference / December 10-12, 2003
Exploring the Transition of Care from Children to Adults with Special Health Care Needs
NORA WELLS: Thank you, John. Thanks, John. And I’m delighted to be here. I’m from Boston. It’s a little bit colder in Boston. We have a little white stuff on the ground, as well, as of last weekend. I’m from an organization called “Family Voices.” How many of you have heard of that organization? Oh, awesome. It’s a national organization of families of children with special needs. It was started actually 11 years ago this month when Clinton was potentially reforming our healthcare system. We could still use that reform, and we felt it was important for those who were high users of the system to have the opportunity to speak up about what would be good for healthcare for our kids with special healthcare needs. We have national staff in six different locations around the country. We’re a small, virtual organization. The real heart of the organization is a set of volunteer coordinators in every state and also a set of youth advisors who work with us. So you might be familiar with people in your state who work with Family Voices. They’re all connected virtually with the national Family Voices organization, and we have a wonderful opportunity to get information out and to encourage people to be involved. So much of what I’m going to talk to you about today is coming from the families of Family Voices.
Many of these are personal friends of mine. I’m the parent of three old sons--they were young at one point--21, 27, and 31. My son who is 31 was diagnosed at five months with cerebral palsy. What do families think are some of the key issues that face families and youth with special needs in transitioning to adult care? I think families think of early visioning for the future. How early do we think about this whole issue of transitioning? We worry about access to quality--as John mentioned many times--of quality adult providers. We worry about adequate and accessible healthcare, finding a major crisis in the country.
Many of our kids are not insured. Accessible community-based services, major crisis in work. Seventy percent of adults with disabilities aren’t employed. My son is one of them. Tailored transition plans. Kids with special needs are a whole range of children, a whole range of youths, a whole range of adults, and one size is not going to fit all. And most importantly, participation at all levels. Youth want to be decision makers for their own care. They also want to be partners with you in thinking about how to improve and change and make our system better. But what I really want to do is speak to you from the voice of families. This is Jim. This picture is from the ICHIP website.
There’s a wonderful video of Jim’s on the website that you could go in and take a look at. At the age of three months, Jim was diagnosed with cystic fibrosis. One of the first questions that the doctor asked his mom was, “Where do you want your son to be in 20 years?” His mom was stunned by the question. It was all she could do to get through the day, and this doctor was asking her to be in planning for her child’s adulthood. What had she wanted for her son before he was diagnosed? The doctor persisted. Forced to think about it, she was able to articulate her hope that her son would go to college. The doctor was supportive. Beginning to plan for college was one way to begin thinking about the future, and it meant thinking about how to help Jim assume responsibilities for his own healthcare. No matter how challenging the disability or compromising the chronic illness, we owe it to all of our children to take the risk of thinking about the future and begin to help them develop a plan, counseled Jim’s mom.
To emphasize this particular point, the doctor who diagnosed Jim told his family that he knew of another family whose child had been diagnosed with cystic fibrosis, and they were told to go home and love him for as long as they would have him. The family had been given the expectation that their son would not live a full life; and therefore, the young man and his family didn’t have a vision for the future. Tragically, that young man dropped out of school at 17 and spent his days watching TV. Jim’s transitioning plan, on the other hand, began right away.
By two and a half, Jim was being encouraged to ask questions about his health, and he soon began taking great pride in being able to pose such grown-up questions. As Jim says, “I was never looked down on because I was younger. I was always asked the most serious questions about my health, and they valued what I had to say.” When Jim entered first grade, his family worked with his teacher to help them become responsible for his own medications and his equipment. Throughout his childhood, Jim was able to take on increasing levels of responsibility for his healthcare. Jim’s first doctor had started this family on a transition planning cycle at a critical time: his diagnosis. And that doctor’s guidance led them on a path that played a major role in Jim’s life. Jim is now 24. He was married this spring. He’s working. He’s preparing to buy his own house. For his healthcare, Jim remains with his trusted doctor.
Jim says, “I’m still seeing my pediatrician. He’s an excellent physician. And, you know, any time I’ve had any trouble, he’s always been able to prescribe what I’ve needed. I’m completely happy with where I’m at. I’m sure that will change in the future, especially if I move to another city, which is probable. I’ll have to find another doctor.” You may hear, as I said, Jim’s story further on the video at ICHIP’s website. Let me introduce you to another young friend of mine, Travis. Travis is 24. He works for Home Depot. He carries his own health insurance. He is a member of the Laguna tribe of Native Americans. He is deaf, has a metabolic disorder, and a vision impairment. Travis received his healthcare as a child through both private health insurance and the Indian Health Services.
He lived in a single-parent household with his mom, and he did develop an excellent relationship with his pediatric provider, who was an Indian Health Services pediatrician. Although the pediatrician couldn’t sign, he did understand Travis’ oral speech patterns and was sensitive to his culture. But finding adult doctors to provide his care has been a much more challenging process. As Travis moved into late adolescence, his trusted pediatrician tried to help him transition to an appropriate adult provider. But it was hard to find someone willing who could understand Travis and who Travis felt trust in. Problems of frequent turnover in the Indian Health Services and overloaded practices compounded the problem. Travis tried a few times, but he quickly returned to his pediatrician each time things didn’t quite work out. Suddenly, however, Travis was in the position of having to make a transition. His pediatrician died.
Travis now has found a male provider with whom he’s comfortable, and here’s the added bonus: there’s a technician in this adult provider’s office who can sign. Travis specifically makes appointments when she is there to help him with his communication. If that technician is not there, Travis’ mom accompanies him. Let me introduce you to another young lady.
This is *Eden, who is a young woman of 22. She is working full-time; however, she has no health insurance. She was given no information when she left high school as to how she might continue health coverage. She was first diagnosed with a chronic major depression and anxiety as a sixth grader. By her second year of high school, she had dropped out, slumped into deep and consuming depression. Pounds had dropped off her already light frame until she became emaciated. She was secretly self-injuring by cutting the bottoms of her feet and forcing herself to purge the small amounts of food she consumed. Her lethargy was sometimes interrupted by states of rage that targeted her family members and risk behaviors such as climbing out onto the third-floor roof. Her family was afraid and didn’t know how to help. Eden and her family did receive help through the Department of Mental Health and a parents’ support and advocacy organization.
Through extraordinary advocacy on her family’s part, she also received appropriate educational services, and she began working with a psychopharmacologist, who, after much experimentation, has found the right of mood stabilizer, antidepressant, and stimulant. However, these drugs must be paid for completely out of pocket. Her doctor tries to give her free samples and coupons whenever possible to defray costs, and the doctors visits are on a sliding fee scale. If she needed hospitalization, however, her mom told me Friday or last week, they would have to hope that the state program would pay. Another mom wrote to us recently about advice on keeping her healthcare rich for her son. “My son has spina bifida and associated medical and learning disabilities, and he’s a college student, and he’s been covered full-time by our family plan, which I get through work. For a variety of reasons, he recently had to drop a course. And because he was taking a reduced course load, dropping this course brought him below full-time status.
We notified our insurance company of the change because we’re superstitious--many families are--enough to know that if we didn’t, he was bound to have a big medical problem immediately. We were told that he gets continued coverage for a full-time student for 60 days from the date of notification. In that case, he will be covered until mid-January. Maybe he’ll be back in school full-time by mid-January. However, without doing anything, he would still have about two weeks without coverage, which, of course, would guarantee a medical emergency. We are applying for SSI, which would make Medicaid available.” However, he goes to school in New Hampshire, and the health plan he’s been under had a provider in New Hampshire, and they’re trying to keep their young son, who’s first year of college, going with the same providers if possible. “We were made aware of the possibility of getting him covered as an adult disabled dependent through our health plan and received the forms. It’s hard to tell from the forms if this is a good deal. It seems like it could be a good idea, since it would mean he would have some flexibility to take the number of courses at school that he could manage without worrying about staying full-time at any level.
He already has a lot to manage with living independently on his own. But the form also asks a very important question, “Is your dependent capable of working?” God, I hope so, or I wouldn’t be stressing out about how to help him manage to get a college education. Also, my son is not able to work right now, but I do hope he will be gainfully employed at some point. The form also asks for information about work history, and though it is a small list, my son has had summer jobs that paid him. If I say he’s capable of working but can’t right now, I am assuming that he won’t qualify for the coverage. But if I say he’s not capable of working, although the rest of the world might assume he’s not capable because of his disabilities, I feel like I’m telling a very basic untruth, not to mention the fact that he already has worked.” That’s the same situation my son’s been in. Some of you might know this young man. Does anyone here know this young man? Glen was born with spinal muscular atrophy, a progressive disease that affects your muscles. I’d like to read some excerpts from an obituary written about Glen that appeared in the “Washington Post” on October 8, 2003, written by his employer, Andrew Byer. “I knew Glen Gallivan for the last six years of his short life, which ended last Tuesday, and during that time I never heard him complain about anything except perhaps a tough loss at the racetrack.
He refused to express a word of regret or self-pity about the affliction that fate had dealt him. Doctors predicted he wouldn’t live to see his second birthday. Even if he survived, he was not supposed to be a functional human being. But for 30 years, Glen beat the odds. He used a motorized wheelchair to move, a portable ventilator to breathe, and voice-activated software to work at a computer. And he acted as if these were minor inconveniences.
‘I’m just a person who needs more equipment,’ he said. If he managed to remain upbeat and enthusiastic, it was partly because he had found the passion that constantly engaged him. He loved to go to the track, the handicapped races, and to bet.” Mr. Byer goes on to describe how he had come to hire Glen. Glen met Mr. Byer at Churchill Downs, and Mr. Byer soon offered him a job as an employee in his business. Glen was hired to produce speed figures based on analysis and calculations of the day’s races for Byer’s speed figures in the daily racing forum. As Mr. Byer describes it, “In a society where people regularly ask for benefits and dispensations because they’re disadvantaged, Glen wanted no favors and made no excuses. In the six years I was his boss, he never uttered the phrase, ‘I can’t do this.’ His spirit never failed him, although his frail body did.” Glen outlived his childhood doctor, who died too young of cancer.
Glen’s healthcare transitions began early. He learned that his opinion mattered and he had an important role to play in making healthcare decisions. He was cosigning informed consent requests by the age of nine, using a signature stamp. He made the important decision to have a trach inserted when he was very ill, and he directed his healthcare in his final minutes by requesting that his mother call 911. Who of you could have predicted, would have predicted, that Glen would lead the remarkable life that he did? “Glen and I weren’t going for remarkable,” his mom, Patty, said, “we were going for living.”
Forging community-based services, work opportunities, supports, and recreation can be incredibly complex for young adults with special needs. The system should have been more help to Glen. If only there could have been a capability within the system to ask, “How can I help? What do you need?” After Glen died, a care coordinator from his insurance company told his mom that the company had always been hoping that Glen would go into a nursing home so that they would no longer be responsible for his coverage. That never happened. Glen lived and died, as we all would be proud to do, in his community, working at a job he loved, with friends and family, enjoying many hobbies and the chance to travel, and particularly participating fully in all decisions about his care. He contributed immeasurably to the lives of others with his humor and his infectious spirit, and he worked with many professionals to provide input on how systems can be changed to better meet the needs of those they serve. Glen did beat the odds. If any of you are the betting kind, the horse in this picture is named after Glen. His name is Glenners. And today, he’s running in the Santa Ana Derby, so check it out. Miya is now 22. There’s our friend Miya. She graduated from high school at 20 and last year was in an excellent program at the Helen Keller Center on Long Island, working on transitioning skills.
But the program was only for one year, and this year she is at home with very few services, angry, and desperately wanting to work. Miya is deaf and blind. There have been many planning meetings around her transition, but services that have been part of her transition plans are not being provided. She has healthcare through Medicaid, but it’s only because her mother’s advocacy is so strong that Miya gets what she needs, such as interpreters at appointments, and they also live in an area with many Medicaid providers.
Her adult Medicaid benefits cover no preventative or restorative dental care benefits except for extractions or full dentures. “The system expects Miya to be content to receive her SSI disability benefits,” her mom says. “It’s not prepared to continue working with her in finding and supporting her in a job. Dollars must follow the individual,” says her mom, “and transition plans must be tailored to what the individual needs, not based on program needs. They must be pursued until the individual achieves the goals. Why don’t we have a way to provide caregivers with health insurance coverage?” asked her mom. “That way, we would protect some also critical parts of young adults’ lives.” I wish there were time to tell you about some other young adults.
This is Nicholas. He’s just beginning his steps toward transition. He’s nine. This is Katie. Katie lived for three years in a hospital. She was home on the Katie Beckett waivers, and she’s now a young adult with a job. This is Maryann. Maryann has autism. She lives in a community home. She’s 35. She still faces transition issues. This is Nick. Nick has had very few services as an adult. He’s still on many waiting lists. This is Michael. Nobody believed Michael would live beyond a year. Michael’s family still has many challenges, as does Michael himself. What’s holding us back from making more progress in the area of transitions? First of all, I think it’s a lack of some of the family and youth awareness of some issues of what we can do to help promote transitions at very early ages. I think there’s a great lack of provider awareness, a lack of knowledge how to begin, a lack of information specific to varied special needs, a lack of the use of available data that we have to look and see where some of the areas where we really need changes, and a lack of partnership.
Partnering with youth and families I think is one of the essential things we can do to start changing what we’re collecting in terms of data, and particularly what we’re doing with it. Youth and family should be part of design, carrying out, interpreting, and using all data that’s collected in order to promote change. What are some of the questions I think we should ask about data? What data are we now collecting that relates to transitions? What does this data tell us? What are we doing or can we do with this data that we collect? What other data do we need to collect? How can this data help us to improve services? What’s the point of data sitting on a shelf? What data do have or need? I think we still have a great deal to look at in terms of transition awareness in the early years. We need providers who know more about thinking about transitions, and we need families thinking about transitions earlier. And what I’ve always thought about collecting information--and in a family organization, we don’t always call it “data” but we call it “information”--many times, simply by asking the question of somebody, you raise their awareness enough to start bringing the issue to the forefront.
There are many varied needs of children, youth, and adults with special needs. As you could see from John’s slides and from what I’ve showed you today of these families, there are many different kinds of needs. We need a lot of information on preventive care. Kids, youth with special healthcare needs have the same preventive needs as anybody else. They need to be looked at in terms of obesity, in terms of exercise, in terms of food, etcetera. We do have information on satisfaction and health coverage of these young adults, but I don’t know that we’re doing enough with it. We need a lot more information on provider roles. What are pediatricians doing? What are adult providers doing? And we need much more information on integration of work and recreation. I did have a handout. I don’t know whether you’ve gotten it, but we’ll have it available. I think there’s some interesting links that you should have. One is the Family Voices link, www.familyvoices.org. We have family contacts in every state who we’d be very pleased to have you contact if you’re interested in having someone work with you. We have a group called “Kids as Self-Advocates” that could put you in touch with young adults who could work with you.
The Healthy, Ready, and Work site is absolutely superb in terms of looking at all kinds of issues around transition. And then, I think there’s some helpful reports and resources. And the last one I’d just like to highlight is the data resource center. It’s going to be discussed tomorrow. It’s being constructed by the Child and Adolescent Health Measurement Initiative, and Family Voices is a partner and Paul *Nuacheck is a partner. And it will allow more access to the National Survey of Children with Special Healthcare Needs, and eventually, a lot of other databases. And there’ll be a session on that tomorrow morning.
Why is it important to think about using data? I know you all believe this. We need to use data to understand problems. We need to develop clear strategies to address the problems. And we need to educate the public and health plans and policy makers, and we need to promote change that’ll improve services. We think data is essential in tracking problems. We think youth with special healthcare needs and their families are ready to be your supportive partners. We know you have a critical role to play. We’re ready to join you. Thanks.