This is Health Care Transition


This is the script for the “This is Health Care Transition” video.
To view this video, go to: http://video.ichp.ufl.edu/tihct.php


Jeremey: Transition means to me, it's starting a new life from childhood to adulthood.

Andrew: Now that I've turned 21 I feel like that's my responsibility.

Jeff: It makes me feel like, definitely like I've grown up and you know become more independent.

Andrea: I see that as you get older, it's better for you to talk to the doctor because you know how you really feel.

Alyssa: It takes time to learn... to learn the responsibility and everything.

Andrew: That's probably first and foremost. You have to be responsible for everything, for yourself.

Amy: I like the fact that it's my responsibility and I see that as freedom.

Alyssa: It makes it that much more rewarding to know that I did it and basically it makes me a lot stronger to know that, you know, I'm capable of doing these things.

Donald: You will be confident enough to stand on your own two feet.

Loretta: Good health means to me means I can live a long healthy life and fulfill all my dreams I want to fulfill. And maybe a few more.

Title: "This is Health Care Transition"

I'm Susan Redmon, Registered Nurse Consultant for the Florida Department of Health, Children’s Medical Services. One of my responsibilities at CMS is to direct health care transition initiatives. Because of medical advances over the last two decades, up to 90% of youth with chronic illnesses and disabilities in the United States will reach the age of 20.

In Florida, Children's Medical Services has been a leader in assuring that children and youth have access to up-to-date medical care; and that medical and related services are family-centered, community-based, coordinated and culturally competent.

Significant progress has been made in many child health services, however, research indicates that many young adults with childhood onset chronic conditions in Florida, as well as the other states, do not have the knowledge and skills they need to get the health care services and supports they need as adults.

We know that, in order to be successful, health care transition must be a long-term planned process that attends to the medical, psychosocial, educational and vocational needs of youth and young adults as they move through adolescents to adulthood.

Envisioning Your Future
Since the day you were born, your family has been there for you, caring for your every need, taking joy in watching you grow, proud of your accomplishments big and small, sharing life together, and loving you with all their heart.

The only constant in life is change, and with every new birthday candle you became more of an individual, more capable, and more independent. Growing up with a disability or special health care need presents many challenges, many people including your family doctors, care coordinators, and therapists have helped to take care of you however now that you are getting older, you get to be more in charge of your own healthcare. Some days it may feel like a heavy burden, but accepting the responsibility will give you more opportunities and more freedom to get out and experience all that life has to offer. And so many experiences are still ahead of you. Someday soon you may be able drive a car, you may be moving to a new school, perhaps even a college in another city. You may be taking a job soon, starting a career. And of course, you will continue to develop friendships, maybe even fall in love. This is your ride on the roller coaster of life, with all the highs, and lows and everything in between.

By becoming an expert in your health condition, accepting the responsibilities, and practicing the skills of independence, you will be creating the foundation of health that will support you in achieving your life goals.

What is Health Care Transition

Doesn't it seem like the older you get, the less you fit in pediatrics?

One important change that will happen over the next few years is saying good-bye to your pediatrician and going to see doctors who take care of adults instead. You might wonder why it's necessary to leave pediatric care, after all, your pediatrician may have cared for you since you were born. The main reason why pediatricians and hospitals insist that you move on is because their focus is health care for children and they don't have the resources to care for adults, but most importantly, they lack the expertise to fully address the health care needs of an adult. You know, there are certain issues you'll want to discuss with your health care provider, in private, and a pediatrician just won't do.

Well, this process of leaving pediatrics for adult-oriented medical providers is called health care transition. In practical terms, health care transition also means becoming knowledgeable about your health condition, being responsible for carrying out your health tasks, and making good health care decisions.

These skills of independence do not come automatically, they have to be learned, practiced, and developed over time. When you were a child, your parents were in charge of your health care. As you got older, your health care providers may have started asking you questions and getting you involved. On your 18th birthday, you will officially be an adult with new legal rights and responsibilities, and you will be calling the shots. But long before that day comes you can get started by getting more involved in your health care, learning everything you can, and working towards health care transition.

Children's Medical Service is committed to helping you in this process. We have booklets, workbooks, and training materials to help you prepare for a smooth transition to adult health care. Take some time to explore these materials and consider the issues as you plan your transition. Keep in mind that getting good medical care is an important part of staying healthy, and good health supports everything else you want to accomplish.

Youth Voices

LORETTA: I think you should start at a very early age, I mean you're not gonna move out at five years old, but I think you should be thinking about your future no matter how old you are, so you'll be able to make that transition more easier.

ANDREW: To me being an adult means to be responsible, that's probably first and foremost. You have to be responsible for everything, yourself.

AMY: With my healthcare was, I think it was hard. I went through a couple years where I didn't really do a lot because I never really had done a lot, other people were, not making me do things but, you know like your mother makes you breakfast in the morning, well it was sort of other people influencing my behavior. Then I went through a period of, no-one was really influencing me so I didn't really do as much.

ALYSSA: The toughest challenge, especially my first year of college, was that my parents weren't telling me when I had to do everything and helping me out with that and I basically had my own choices to make -- whether I wanted to take care of myself or not -- and unfortunately, my first year I didn't make all of the right choices and I'm still suffering because of that. Basically it takes time to learn... to learn the responsibility and everything.

Jim: I’d say that there aren’t too many differences between myself and the average person. The average person has things that they have to take care of that no one else does. For instance if somebody has a child at a young age, they’ve got to take care of that child as well and in addition to taking care of their own life. Well, I kind of have a part time job as somebody else might would with a child or a full time job as the case may be in taking care of my body. So I might, you know, have to take an extra half hour before I go out with friends to make sure I get my treatments done.

Amy: And through camp, too, being around other people with diabetes, I learned how easy it was, and then I got to the point where I liked it, I liked figuring out what was going on and I liked figuring out what was effecting what and how to make it work. And I also got to a point where I realized that you really do feel better if you're in better control. That's something you just kind of have to learn. And the more I learned, the more control I wanted to be in. So as I got older the more I learned about what tests needed to be done and what they meant and that kind of stuff, the more I wanted a doctor who was going to do that.

Jeremey: Since I was about the age of fifteen here lately I've been uh doing it on my own, my dad has dropped me off there and I've been just talking to my doctors just myself and going and doing what I need to do what appointments I need, and doing it on my own.

LORETTA: It's different when you don't have your parents speaking for you, like making your appointments and things like that, it's very different when you have to take on that role by yourself. It's a very different transition when you're not used to doing it and you have to ultimately to start doing things yourself, it's very different and very scary at sometimes in your life.
Jim: I was encouraged to do things myself at an early age and am now, and so that, I think that will help me along in the future as well. I was always asked the most serious or direct questions about my health were asked directly to me and they valued what I had to say about it. I remember initially calling the pharmacy to refill prescriptions and I remember her just giving me a bottle and say call this number and going to refill it. It wasn't that big of a deal to me that I rode my bike down to the corner and got it filled. They say it was "big steps" for them to let me do it. I never really looked at it that way. It was more like, I can do it mom so just why don't you let me do it.

Jeff: Prior to age 16, my parents were heavily involved in terms of my medical decision-making. Umm my doctors would talk to them and confer with them about any ideas that they had for surgeries for me and I kind of went along with that cause "doctors know best," right? Then I say 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. And then by the time I was 18 it was more or less all up to me.

ANDREA: A lot of times when you’re in the room with your parents and the doctor you want to ask the doctor stuff but you don’t want to ask the doctor stuff in front of your parents, and I guess it creates more stress because you want to ask the question but you’re afraid of your parents reaction or your guardian’s reaction. But I see that as you get older it's better for you to talk to the doctor because you know how you really feel.

Jeff: Dr. Gardener in my most recent physical definitely expressed extreme satisfaction with the fact that I was going there by myself. The fact that I was branching away from my parents, umm and he felt freer asking me more personal questions.

AMY: Going from high school to being on my own, I think, the things that were difficult were things like finding a doctor, just learning to do things on my own, you know, getting my prescriptions, things like that, but I think anybody goes through that, you know, from living at home to living on their own. I think you just have some more things that you have to figure out. And the big deal is that it's important.

ALYSSA: The biggest transition from high school to college for me was having to take complete responsibility for my health. Of course, there were the small things like having to pay my own bills and wake myself up every morning and completely having to structure my own life how I wanted it and not having my parents guiding me and holding my hand the whole way.

DONALD: Once you start and somebody is there to teach you what to do and how to do it, then you would get the idea of, you know, what to do.

Jim: I’d say that there aren’t too many differences between myself and the average person. The average person has things that they have to take care of that no one else does. For instance if somebody has a child at a young age, they’ve got to take care of that child as well and in addition to taking care of their own life. Well, I kind of have a part time job as somebody else might would with a child or a full time job as the case may be in taking care of my body. So I might, you know, have to take an extra half hour before I go out with friends to make sure I get my treatments done.

Laura: Well because I have cystic fibrosis my mom and I had to do a lot of extra planning, we had to find a cystic fibrosis center on campus at the college that I wanted to attend, and we also wanted to find a college that was in warmer weather, because I found that I was getting sicker and sicker in New York, and I also wanted to find a college that provided the major that I wanted to study which is rehab counseling, and the only thing that I was really distressed about was leaving my pediatrician, who I'd had since birth.

ANDREW: I'm really kind of partial to my pediatrician.

ALYSSA: I'm very nervous about changing doctors. I've had the same doctor since I was 11 for my diabetes so, you know, 10 years is a long time. But I know it has to be done.

LAURA: My mom also taught me how to interact with these professionals in telling them what I need and what I want because I'm the one who knows me the best and how my body works, and also how they can help me.

AMY: Well then I went off to college and that's when I had to decide for myself, to choose for myself. I went through a period of pretty much trial and error, and trying to find someone I really liked.

Loretta: I've been to plenty of doctors that are unfamiliar with my disability, but I'm the kind of person that I give everybody a chance, and if they're willing to listen, I'm willing to tell them about my problem and how they might can help me overcome some of the difficulties I have in daily life.
AMY: When you go from your pediatrician to an adult doctor, you have to care for yourself more. The responsibility is more on you, and I think they expect you to do everything. I think a pediatrician expects to do a little bit themselves, and even expects parents, or other people to have a lot more impact than they do. And with adult health care providers, you're the one who's in charge and that they're dealing with.

Andrew: Now that I've turned 21 I feel like that's my responsibility, you know, I've taken that under myself and that's fine with me.
Loretta: Good health means to me means I can live a long healthy life and fulfill all my dreams I want to fulfill. And maybe a few more.

Andrew: Now that I've turned 21 I feel like that's my responsibility, you know, I've taken that under myself and that's fine with me.

AMY: I like the fact that it's my responsibility and I see that as freedom.

Alyssa: It makes it that much more rewarding to know that I did it and basically it makes me a lot stronger to know that, you know, I'm capable of doing these things.

Loretta: Good health means to me means I can live a long healthy life and fulfill all my dreams I want to fulfill. And maybe a few more.

Getting Started

You need to be as healthy as you can in order to go to school, be with friends, and do the things you want to do. Up to this point, your parents have probably taken care of most of your health-related activities such as getting and scheduling medications, interacting with doctors, or paying for the health care. In order for you to take over these responsibilities later you need to start now, learning about your health condition or disability and taking responsibility for the activities that help to keep you healthy.

What can you do? First, Learn as much as you can about your health care needs. Do you know your diagnosis? Can you list your medications and when you take them? Do you know what you have to do to stay healthy? Secondly, Try to do as much as you can. Do you carry out health-related tasks? How much help and how many reminders do you need? Can you do these things independently? If cannot do some things independently, can you direct others to do them for you? Some things you may never be able to do all by yourself, but you can still learn how to tell someone else how to do these things for you. This is a great skill to have if you are away from home and need to ask someone for help.

Third, Actively participate in your health care. Do you speak up during your doctor visits? Do you ask and answer questions? Do you spend time alone with your pediatrician? Do you discuss treatment options and participate in health care decisions as an equal partner?

One of your goals over the next few years is to become an expert in your health condition and become responsible for all of the activities that help to keep you healthy. This may seem like a lot to learn, but, if you start early and take one step at a time, you will be amazed at what you can accomplish in a few short years.

By now, you should be able to help out around the house with chores, and you may be able to find some volunteer or part-time paid employment. Now is a good time to find out if your health condition or disability might limit the kind of work you can do when you become an adult. This will help you pick out the best courses in school and help you decide what kind of training or education you might need. It's also a good time to find out if you are eligible for services from Florida's Division of Vocational Rehabilitation. If you're 16 or older, Voc Rehab services will help you figure out what you're are good at, and what kind of job might be right for you.

Transition Checklist: Getting Started

* I can describe how my disability or health condition affects my daily life.

* I can name my medications (using their proper names), and the amount and times I take them.

* I answer at least one question during a health care visit.

* I have talked with my doctors or nurses about going to different doctors when I am an adult.

* I manage my regular medical tasks at school.

* I can call my primary care doctor's or specialist's office to make or change an appointment.

If most of these statements are true for you, then you're beyond Getting Started, you are On Your Way.

On Your Way

Now that you're taking a more active role in your healthcare you might feel some of the ups and downs that other teens with special health care needs and disabilities feel. You might feel that adults treat you like a little kid and tell you what to do, always checking up to on you. Other times you may feel like all the things you have to do and think about are just too much and you would like someone else to just take care of them for you. And sometimes you get so tired of having to take medicine, or go to therapy, or stay at the hospital, and hearing from everybody about what you need to do to take care of yourself, that you just want to take a vacation from all the health care stuff.

There's no denying that it can be hard work to manage a disability or special health care need, but being able to care for yourself might just give you the opportunity to someday live independently, attend college, and have a job. But independence doesn't just happen. You need to learn, develop, and practice the skills that support independence. At this point, it's important to spend some time alone with your health care providers. You will be giving the doctors the information they need about how you have been feeling, you'll be asking questions when you need more information, and discussing your treatment option.

Another way to practice and prepare for independence during medical visits is to keep a medical journal. A medical journal is a good place to keep track of experiences related to your health.

Sometimes it is hard to find adult doctors knowledgeable about your particular health condition, so it is important to give yourself at least a year to look for a doctor to take care of you when you are an adult.

Did you know that in Florida when you turn 18, you are legally an adult and you have the right to have most medical and other information about you kept private from everybody, including your parents. Health care providers cannot share this information unless they have written permission to do so.

Other medical forms that everyone should have in case of a medical emergency are Advance Directives, which include a Living Will and a Health Care Surrogate.

For those young people whose ability to make informed decisions is diminished, families may need to take legal action to become the young person's guardian. This process should be started soon after the 17th birthday. There are different levels of guardianship, all of them involve a legal process that takes time and money including submitting a formal application to the county probate court.

Transition Checklist: On Your Way

* I keep a personal health notebook or medical journal.
* I reorder my medications when my supply is low and call my doctor when I need a new prescription.
* I answer many of the questions during a health care visit.
* I spend most of the time alone with the doctor(s) during health care visits.
* I tell my doctors if I understand and agree with the medicines and treatments they suggest.
* I know if my doctors do not take care of patients who are older than a certain age (for example, 21).
* I regularly do chores at home.
* I can tell someone the difference between a primary care doctor and a specialist.

If most of these statements are true for you, then you are well On Your Way and you are beginning to Take Charge of your health care.

Taking Charge

You may not have felt any different, but when you turned 18 you legally became an adult. As an adult, you gained the right to vote, sign contracts, give consent for medical procedures, and control who has access to your medical information. With the rights of adulthood also come new responsibilities.

Completing the transition process will involve a few more steps:
* Transferring to adult-oriented providers,
* Developing a good relationship with these new providers,
* Establishing your new leadership role in managing your health care, AND
* Ensuring that you have ongoing health insurance coverage

To find a new doctor you need to shop around. Ask everyone you know for suggestions. Set up an appointment when you are in good health just to meet the doctor and talk about your health care needs. If you don't like this doctor, try someone else. It may take some time, but be patient. Even after you find someone you like, it takes time to build a new relationship.

Another big change is that you are now responsible for making decisions about your care. This can be an important and sometimes difficult change for your parents. After all, helping to take care of you has been one of their major concerns for a long time. Encourage your parents to think of the change in decision-making as a promotion. They have been promoted from managers to consultants. For your part, remember that your parents have a lot of experience with your health and they can be a great source of information and support as you take charge of making your own health care decisions.

Paying for health care can be very challenging. At this point you may still be covered by your parents' health insurance or some combination of public or private plans. Most likely this will change over the next few years. Keeping health insurance is very important over the next few years. If your insurance coverage depends on you being in college, then you need to be successful in school. This will also help you get a job that has health insurance benefits. If you qualify for a public health insurance plan such as Medicaid, it is important to be aware of the rules and requirements that need to be met in order to continue receiving it. You do not want to find yourself sick with no way to pay for the care you need. Ask your health care providers for advice about maintaining health care coverage.

Transition Checklist: Taking Charge

* I can tell someone the effects that getting older may have on my disability or health condition.

* I can tell someone about medications that I should not take because they might interact with the medications I take.

* I am alone with the doctor(s) or choose who is with me during health care visits.

* I answer all the questions during a health care visit.

* I have identified adult doctors and facilities that I will go to when I leave my current doctors and facilities.

* I manage all of my regular medical tasks outside the home (school, work).

* I can tell someone what new legal rights and responsibilities I gained when I turned 18 years old (sign medical consent forms, make medical decisions by myself).

* I can tell someone how long I can be covered under my parent's health insurance plan and what I need to do to maintain coverage (such as be a full-time student).

If most of these statements are true for you, then you are Taking Charge of your health and actively working on transition to adult-oriented health care.

Growing up with a special health care need can present you with many challenges. However, young people with chronic health conditions and disabilities who were able to meet these challenges say that they had to do several things to be successful. They had to take responsibility for themselves, manage their own health care, and be as physically fit and healthy as possible.

Health care transition takes time, planning, and practice. It involves becoming knowledgeable about your health condition, being responsible for health care tasks, and making health care decisions. It is about taking on new responsibilities, practicing independence and finally, taking charge. But most of all, health care transition is about building a healthy foundation from which to pursue your dreams.