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Newsletters: Transitioning to Adult Care: It’s a Process
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Transitioning to Adult Care: It’s a Process

Parag Shah, MD

Dr. Shah, the Medical Director of the Chronic Illness Transition Team at Lurie Children’s Hospital of Chicago, led two breakout sessions on transitioning at the Oley Conference in June—one for adults and one for young adults. It is such an important topic, we asked him to write about it. We welcome your responses and invite you to share your experiences with us, especially those unique to transitioning with HPEN.


Transition to adulthood is a challenging and exciting time for youth and their families. Changes occur in all aspects of life. Children may be moving on to college or a job and moving out to live on their own. As their role changes from being a child to being an adult, they assume many more rights and responsibilities. While all these things can be exciting, for youth with chronic illnesses or special health needs—and their families—the challenges can be greater and sometimes frightening.


Some youth face the prospect of having to manage many aspects of their health condition by themselves. They may be getting ready to meet a new set of adult providers, who think and operate very differently than the pediatric providers that have seen them all their lives, and who don’t know them at all. For all these reasons, knowingly and unknowingly youth may fear the idea of moving on and parents (and providers) very often fear “letting go.”


Despite all of this, we know our children have to and want to move on. There are many benefits to entering the adult world, such as being treated with more respect and having more autonomy over ourselves. The young adults we talk to know these benefits and can state them very clearly. So as parents and providers, we must prepare youth to enter the world as best we can, so they—and we—can feel confident and comfortable, and we can enjoy watching them become adults.


It’s a Process

I feel the most important thing to keep in mind regarding transition is that it is a process, not an event, and that process should start as early as possible. Many people argue that the process of transitioning starts at diagnosis. It can take some time to learn about one’s health care and to master self-management skills. In fact, we continue to learn self-advocacy and gain confidence throughout our lives. Start by talking to your health care teams early as a family, and parents, start allowing for some independence. Let youth make some mistakes.


One of the most important aspects of transitioning is instilling confidence and self-advocacy skills in our youth. Knowledge and proficiency with managing one’s own health, along with confidence, can lead to independence. Parents who have seen their children perform these skills, and have seen their children respond to challenges and the unknown in a positive way, can sleep better at night.

Checklists, Summaries

Transition guides can help parents make sure they have covered all the things that need to be covered. These guides often include checklists and fact sheets on different aspects of transition, from benefits, to finding adult providers, to guardianship, and so on. (A few Web sites that offer checklists are cited below; see “Brief Resource List.”) The checklists can be general or cover specific issues, such as home parenteral and/or enteral nutrition, and they can be used to monitor progress or to ensure that you haven’t “missed anything.”


The fact sheets that accompany many of the guides often give short summaries on a specific topic, such as going away to college and/or work, guardianship, and finding adult providers. They can lead you to more extensive resources or may touch on something you may not have thought of. Explore the Internet, as many groups are publishing these resources online, and start with your local university health care center’s Web site.


Many providers and the American Academy of Pediatrics recommend that patients create and maintain a portable medical summary. These summaries come in all different shapes and sizes, from one page to nine or ten pages. Many are very sophisticated and include information from provider to provider, and many are meant to be maintained by patients. We believe that by going through the process of creating a medical summary, families learn a lot about the youth’s medical condition and it helps them organize all the information they need to know. We propose a decent-sized medical summary that is approximately two to three pages, and is maintained and updated by the families, preferably electronically. Templates or forms are available on many Web sites and through many institutions.



Many youth are not comfortable talking with their health care teams, and parents often do most of the talking. While youth want to talk and be seen at appointments by themselves, they may be afraid they won’t know what to say or of giving the wrong information when asked. When providers do talk with them confidentially, the conversation generally revolves around sex, alcohol, and drugs, not around the youth’s general health care.


We definitely suggest all youth ask and answer questions by themselves, and all parents and providers allow time for their children/patients to get comfortable with this skill. In between visits, it may help to have children prepare some questions for their providers, which helps start conversations between youth and their providers. In addition, it has been suggested that a youth learn to be able to describe his or her condition(s) in three sentences; this is a good balance between a one-word answer and a detailed dissertation. Go over this with your providers regarding specific conditions.



One of the most common topics for questions about transitioning is the change in insurance and benefits that occur when a young adult turns 18. The full aspect of this is well beyond the scope of this article and it is continually changing, but I will try and explain some basics here. As we all have heard, the health insurance marketplace is changing. Whether you believe in Obamacare (the Affordable Care Act) or not, there will be some decisions to make. These changes affect youth between 19 and 26 greatly. (See Table 1)

First and foremost, youth between 19 and 26 will all have the option of having health insurance under their parent’s coverage, provided the parent’s plan is private and offers dependent coverage. Many states had this provision already, so this may not be a large change in your state.


Next is the public insurance expansion. Prior to 2014, most young adults had to meet income AND disability criteria (which are very different than childhood disability criteria and is the main reason many youth lost their public insurance when they turned 19). Starting in 2014, in states that choose to do so, public insurance will be available to almost all youth that are under 138 percent of federal poverty level.

Finally, new health insurance options will be available (health insurance exchanges) with help for paying premiums and cost sharing for most youth under 400 percent of federal poverty level. Plans will have to adhere to a minimum standard of benefits (including mental health and prescription drugs) and will be expected to lay them out in a clear and concise manner. Nobody can be denied coverage for a preexisting condition and companies cannot charge more for a preexisting condition. All of these benefits improve options for our youth as they enter adulthood and adult care.


The best way to feel comfortable and care for yourself and your family is always to stay informed and be a good self-advocate. Health care skills such as being able to call your insurance company, understanding common terms, and learning how to read a benefit sheet are worthwhile for parents and for parents to teach children. Many youth feel more comfortable and confident after seeing their parents do this and after doing it once themselves. Resources regarding insurance and benefits should be available through institutions, social workers at the hospital, case managers, and certainly online.


Finding a New Provider

Both parents and teens ask about finding adult providers. As all families with youth with chronic illnesses know, a good relationship with your health care team is one of the most important aspects of your lives. While location and insurance will play a big part in determining who you can and will see as an adult, there are a few ways to find adult providers. Ask your current providers about referrals. They may have contacts that they trust and with whom they have experience working. Ask friends and family members. Finally, insurance companies maintain lists of providers.


Once you locate an adult provider and set up your first appointment, think about the questions you want to ask—not just about your health care, but about their style. Look for somebody who is willing to work with you to solve problems, rather than somebody who is very strict about their plan of action. Make sure you get a feel for how the team works together, as you will likely interact with many members of the team. Most of all, trust your gut feeling about providers after you meet them. It’s likely you’ve met enough providers in your lifetime to know when one is a good match.



Transitioning to adulthood and adult care is exciting but can be scary. While there appear to be an endless number of issues, the benefits are great when young adults feel confident and accomplish things independently. Remember to talk with your youth and health care teams about transition, and keep in mind that it is a process not an event. Use the resources available and simple fact sheets, and parents, enjoy the process of watching your children become confident and capable self-advocates.


Brief Resource List

Illinois Chapter of American Academy of Pediatrics
Maintains a whole host of fact sheets in pdf format. Many resources are local to Illinois.

Got Transition?
A national organization that offers resources for clinicians and families; it sets many of the guidelines and expert opinions on which much of current transitioning practice is based.

Lurie Children’s Hospital Chronic Illness Transition Team
This transition site includes many fact sheets, along with checklists, general articles, and links to other resources. See sample checklist questions on page 12.

This online, free, secure site will send a text message to your phone when it’s time to take your medicine.

LifelineLetter, July/August 2013

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.


Updated in 2015 with a generous grant from Shire, Inc. 


This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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