Health Care Transitions: College and Beyond


Jeff:  I'm Jeff Walden, I am 22 years old and I’m a communications major here at Keene State College in Keene, New Hampshire. I’ll be graduating in December. I hope at that point to pursue a career within the radio field.  I’m a normal college student, I like to think of myself that way so I do things that everybody else here does. I mingle with friends, I have get together, I have a girlfriend that I’ve been with for over two years now and we’re pretty happy. so we do a lot together. we go, we watch movies, we eat meals together, whatever. I like to watch football, basketball, I’m heavy into sports.  Of course I do my fair share of studying the very foundation for our being here. I think in that respect I mean, I’m a pretty normal college student.


Ruth (Jeff's mom): I would describe him as a die hard Cowboy’s fan.  loves the NBA. Really  enthusiastic about finishing school, wanting to go to work.  He has a love for life and I think that he’s truly enjoying life as it’s going on now.

John (Jeff's dad): I feel there’s always been a sense of independence, real independence that he’s had. I’ve never seen him, as him letting his disability hold himself back.
Ryan: Jeff is a very outgoing, very intelligent person. He’s taught me a lot about my own, being my own person and not always, like answering to my parents, doing what I think is right, not always having to answer to other people. And he’s just taught me a lot about independence.

Jeff: I think my overall dream, overall goal in life is to become an independent person, to live on my own or with a wife when I get married. To you know be able to maintain a family. and in a sense I’ll be taking that first step in a few, just a couple short months when I leave college. I’ll be going back home, looking for a job, lining up new care, so I think that will be a major step towards, you know building my ultimate goal.


Narration: Health Care transition is often a challenging process for young adults with special health care needs. Let's see what we can learn from Jeff Walden and his family as they share their experience.
 

Jeff:   Arthrogryposis   is a rare neuromuscular disease of the joints and muscles. It basically means that I have limited movement of my joints and muscles. it comes from lack of a protein at birth. That much I know. In terms of living with the disease, I think it’s been helpful that I’ve had to live with it since birth so I’ve had to make these adaptations of my lifestyle since I was born. So I’ve pretty much at this point have learned to live with it and to cope with it and to live my life around it basically.

Ruth (Jeff's mom): Jeff was born on September 6th, 1980 and at birth it was identified that he had a major disability.


Dr. Shapiro: his hips were very stiff, in particular his arms were extended on one side, bent on the other, had very little finger motion. His knees were totally stiff, they were straight out, so it was obvious right from the beginning that this would require major medical management.

Narration: Jeff required extensive surgery and rehabilitation to achieve his current level of independent function. He received medical care from a pediatrician, a pediatric orthopedic surgeon and a hand surgeon. It was during this time that Jeff was increasingly included in his health care and decision making process.

Jeff: about when I was 16, doctors started talking to me and I’m not saying my parents weren’t part of that process, they definitely were but it was good to know that they were talking to me and explaining to me exactly what they were thinking

Dr. Upton: it’s interesting watching him with his parents. Many times his parents would want something done and you know he just kind of give, that kind of look on his face and he’d kind of veto them and I’d try to treat him in a one on one fashion and not do something that he didn’t want us to do.


Jeff: And then by the time I was 18 it was more or less all up to me. I actually came to them with ideas for surgeries, said oh I’d like to be able to do this or do that and I think this will help me do that.

Ruth (Jeff's mom): That independence is just so important in an early age

John (Jeff's dad): realizing that Jeff needed to be more of a voice now in medical procedures and surgeries in particular during that, middle school, high school years period.

Narration: Jeff’s family and physicians included Jeff in the health care decision making process with the expectation that it would enable him to manage his own care as an adult. Jeff's decision to attend college away from home presented opportunities for Jeff to practice his independence but also presented new challenges.

Jeff: going away to college, it was very exciting, yet very nerve wracking at the same time. I didn’t get to understand that, the only time I’d really been away from my family before that for any length of time was at a summer camp and for not even a week. So going away to college was such a big transition for me.

Ruth (Jeff's mom): Yet there was still the concern that Jeff was being cared for the way that he was cared for at home. It was easy to do it. Jeff made it very easy to do it with the smile that he had on his face when we drove away from Keene State College. When we called the next day and he was too busy to talk to us, we knew that it was the right thing to do. And seeing him and seeing how happy he is and seeing the things that he’s accomplished at school. You knew that it was time to let go.

Jeff: I wanted to come here since I was a sophomore in high school. I think the campus is very handicap accessible which obviously for me it was one of the primary factors in considering any college. little story behind that. My mother was involved in a parent support group when was in high school. And for one of their meetings they had several disabled student coordinators come and speak from various colleges and the coordinator from this college is Jane Warner came to speak and I really was impressed with what she had to say.

Jane (Disability Services - Keene State College): : Students with more medical and physical disabilities the important piece is to really work with the student up front in regards to what those, those might look like. I know when we were working with Jeff, he came prepared with lists of questions that he had and was really up front with us in terms of what he might need for assistance early on and how would we probably solve around that from the note taking, from eating, and some of his personal care issues. There was a lot of consideration around that.

John (Jeff's dad): a big part of that preparation came from the Independent Living Center. their social worker there, provided various training for Jeff and us too.

Ruth (Jeff's mom): Jeff requires total care for everything that he does. Feeding, dressing, bathing, having his clothes put on. I mean there’s basically very little that Jeff can do because he has such limited use of his upper extremities.

Jeff: that is definitely frustrating at times. But on the other hand I’ve come to terms with that. And I realize that that may never change and that’s just something I have to live with. I mean I’m not going to let it stop me from achieving my ultimate goals.

Ruth (Jeff's mom): So now he gets care at school but it was learning how to manage that care and again it was supporting Jeff through the earlier years and then again throughout the summer before college began of planning out what the attendants needed to do, of working through the independent living center and being trained on how to hire personal care attendants, how to fire personal care attendants. How to handle conflict and how to best do all of these thing

Jeff: I think you're getting better at it.

Personal Care Assistant: I think so. I'm not as afraid anymore of breaking your arm anymore

Jeff: Ryan just does it, she doesn't care anymore. (Jeff smiles, making a little joke)

Jeff: in terms of my personal care while it’s pretty easily managed now, it wasn’t always that way.


Ruth (Jeff's mom): I’d say that there’s a lot of interactions that have helped Jeff to become the person that he is today. And I would attribute most of those to the medical interventions that took place to enable him to do the things that he’s doing today that no one would predict several years ago.

Dr. Shapiro: Well he wants to maximize his potential so, he was always very receptive to really major surgeries and at times even asking for them.

Dr. Upton: The thing that’s helped Jeff the most is Jeff and his own attitude and his frame of mind as well as his family and his support system around him but you always, you always have to kind of build on what somebody has. And atomically from a muscular skeletal standpoint, Jeff is very limited, but he really isn’t if you know Jeff. He will do whatever he wants. You know, he can accomplish anything.

Jeff: I think it helped a lot that I had such a strong support system back home. My parents always believed in me, they’ve never stopped. And that has really helped me. They’ve really encouraged me along the way. And all of my family, my grandparents, everybody has just encouraged me so much to be everything I can be so I think that helped me a lot.

Mixed Transition: Moving from a pediatrician to a primary care internist

Ruth (Jeff's mom): initially when we were talking about a switching I thought it was going to be an easy step. I thought that he would just switch and transition to our providers on, it was a large practice and the pediatrician felt very uncomfortable about doing that. She felt that if we went to a practice of 12 doctors that Jeff would have 12 times he’d have to explain his history. That he would have to explain it again when he went back and saw the provider that he hadn’t seen in the last 3 years. And that he could end up with just about any one and their philosophy may not mirror what she felt needed to be mirrored when he needed care and he was older. So she felt that he really needed to go to a small practice of one, possibly two practitioners who would become very familiar and intimate with Jeffrey.

Jeff: I was very involved in terms of making the decision to switch from Dr. Penapenny to Dr. Gardner, my parents would never make that decision for me without consulting me. In a sense, I need to be happy seeing the doctor I am seeing. I need to be able to trust this doctor.

Dr. Gardner: Well in the beginning there’s issues of getting to know what his medical problems are and what they might be and now as he’s transitioning out into the community from college, there’s going to be issues of personal care, interaction with other people, possibly even issues of sexuality.

Mixed Transition: Continuing with pediatric specialty care

Jeff: at the age of 18 Dr. Shapiro offered me, shall I say another alternative in, instead of seeing him, I could see somebody that deals with older patients. I chose to stay with Dr. Shapiro because he has seen me basically since I was born. I mean he knows me better than any other doctor and I personally didn’t and continue not to feel comfortable going to somebody who in a sense has to learn my case report all over again, I mean I’ve always felt very comfortable with Dr. Shapiro, I know he makes very competent decisions regarding my care and I will continue going to him for the conceivable future.


Dr. Shapiro: Well generally with a lot of these childhood diseases, the very complicated ones that many adult physicians have never seen the disease. So you loose a degree of expertise when they just appear suddenly with a disorder they aren’t familiar with. So that’s the reason many are are continued here.

NARRATION: Jeff and his family have combined pediatric specialty care and adult oriented primary care to best meet Jeff's medical needs.

Jeff: I think the most positive thing about switching from a pediatric to an internist is it’s a sign that you’re growing up; it’s a sign that you’re starting to take charge of your life.

Dr. Gardner: I think the most important thing that I do when I’m transitioning any adolescent from an adolescent or pediatric practice than in adult practices I tell them right off the bat that what they tell me within the privacy of the room, is between us. They usually breath a big sigh of relief and then whatever issues they have they can talk about openly because they know that I’m not going to blab it to their parents.

Future concerns: Insurance

John (Jeff's dad): Right now you know I think it’s pretty accurate to say that you know Jeff still needs to know about health insurance matters, about as far as direct involvement with that

Jeff: Yeah, my parents actually do handle quite a bit of the insurance and billing and that is something I should become more involved in and I will definitely in the very near future

Dr. Shapiro: the other problems are basically societal because it’s very; these are families and individuals with extensive medical needs, which translates into expensive costs. So many insurance companies will either undercover them or drop them. All of a sudden he’ll graduate from college and he won’t have a job or he may have a job but it certainly isn’t going to give him, oh I shouldn’t say certainly, but in most instances doesn’t give you the coverage that you need for the disorder that you have.

Future Concerns: Driving

Jeff: Driving has been a major issue for at least a few years now. I have had multiple evaluations,

John (Jeff's dad): it’s having the driving system, it’s having a car adapted to suit his individual needs, It’s having to think about doing it independently. Getting in and out of the car in a way where he doesn’t need somebody there.

Jeff: If all goes well, I’ll be getting my license then going through the process of buying a car and hopefully by this time next year, I’ll be a licensed driver, ready to rock and roll.

Future Concerns: Work

Jane (Disability Services - Keene State College): he’s so ready for the world of work and being independent that I’m really looking forward to this transition in terms of his returning home right after college but I don’t see him being home for long. I see him with an apartment, with driving stuff and that job and fully transitioned

Jeff: both my parents, but my father particularly has always instilled in me the value of planning ahead. So you’re not caught in a pinch.

John (Jeff's dad): And I think as far as entering the world of work now and the things he has to plan for and think about there, I think that has given him a good preparation

Jeff: now when he talks to me about planning ahead he is referring to you know, getting myself in order in terms of having my driving test in December, things like that, having my own care lined up, having a job, or be looking for jobs

Dr. Gardner: I think I am going to be playing an important role in not only helping Jeff through acute illnesses but helping him get through the system. Be that handicapped parking stickers, paperwork that needs to be filled out for workplace accommodations, possibly sick time off if he needs it, notes for work, at times maybe dealing with his employers if need be.

Recommendations and Lessons Learned

Ruth (Jeff's mom): I think the biggest step that parents can take to help their children transition is to start early. Start as soon as you know that there’s a diagnosis involved. it may sound, this is ridiculous, why would I want to start with a child that’s a newborn or while would I want to start with a 6 month old or a two year old and the reason is, you have to get yourself to the place in space where you’re comfortable allowing your son or daughter to transition. That takes a lot of years, that takes a lot of preparation and it takes a lot of thought and I think the important things are that umm, you plan for those things, you practice, you role model and when the time really comes that you’re handing over those reins to your son or daughter, they’re prepared for it. You’re prepared for it.

John (Jeff's dad): you know current medical practitioners who are involved with your child, I think they need to have an instrumental role, they need to take an independent role in terms of helping a family to prepare for that. Not every family is going to think of all those things, all those considerations that you need to make or the questions that you need to ask. and you need the experts for that help too. I think educating your own child along the way. And I think that has to start early on. as they go through their years and language develops and understanding, you need to give your child what they can handle in terms of understanding and preparation

Ruth (Jeff's mom): pediatricians can start early with the parents realizing that this is a life goal and that transition is across the life span. So I think that they can start as soon as they know that a child may have some needs that may be unusual but even if they’re not unusual for the typically developing kid I think transition is an important thing to think about. And so I think that pediatricians can start at birth, what are you hoping for your child, what do you envision your child doing. I think they can start to talk to you at about the age of 12 at about puberty about the child leaving the practice and going on into an adult practice. I think they can talk to you about the qualities that you might want to consider when you go into an adult practice for the provider that you want to choose.

John (Jeff's dad): I think educating your own child along the way. And I think that has to start early on. as they go through their years and language develops and understanding, you need to give your child what they can handle in terms of understanding and preparation

Dr. Gardner: ideal transition between a pediatrician and an adult physician would be if I were to receive a phone call or a letter of introduction from the pediatrician briefly stating the problem list and pertinent medical history and that could be a cover letter to also include the medical record chart, the pediatric chart and that that should probably arrive at the office before the day of the visit so that you can study it

Ruth (Jeff's mom): I think adult health care providers really can think about, this is the child coming in who may have significant needs who is used to coordinated and comprehensive care and in the adult side of the world, that coordinated and comprehensive care may not be an everyday occurrence and how am I going to make that happen for this person coming into my practice now. We may need to coordinate with therapists, we may need to coordinate with other specialists, we may need to coordinate with sub specialists. How’s that going to happen? Now I think that there’s challenges for both the pediatric side as well as the adult health care provider. I think that there is communication that needs to go on between the pediatric provider and the adult health care provider. I think that there’s a number of steps that can be done to make it a seamless system but that’s going to take work and time.

NARRATION: As we have seen, successful transition from pediatric to adult-oriented care; and from high school to college and beyond is an ongoing process that takes preparation, planning, cooperation, and creative problem solving. Jeff's family and health care providers involved him in the decision making process early in childhood because they shared a vision that Jeff would grow to be an active, independent adult. Today, as Jeff is leaving college and preparing to enter the world of work, this vision is being fulfilled.

Jeff: College is everything I thought it would be and more. This has just been such an amazing experience. I really will miss it quite a bit but on the other hand new challenges are arising and I am looking forward to answering them as well.

CREDITS:

Jeff graduated from
Keene State College in
December 2002.

After returning home,
he was hired by the
New York State
Department of Health.

Executive Producer:

John G. Reiss, PhD

Institute for Child Health Policy, University of Florida

Creative Team:
Randal Miller
Robert Gibson
Sherilyn Wood
John Reiss

Narrator: Dana Hill


Special Thanks:

The Walden Family

Ryan Sexton

Jane Warner, M.Ed. CAGS
Disability Services Coordinator
Keene State College
Keene, New Hampshire

Frederic Shapiro, MD
Assoc. Prof. Orthopedic Surgery
Children's Hospital Boston
Harvard Medical School

Michael J. Gardner, MD
Prime Care Physicians, P.C.
Albany, NY

Joseph Upton, MD
Assoc. Prof. Surgery
Children's Hospital Boston
Harvard Medical School

Copyright 2004 Institute for Child Health Policy

University of Florida WWW.ICHP.EDU