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NDEP is a partnership of the National Institutes of Health, the Centers for Disease Control and Prevention, and more than 200 public and private organizations.

Transition Resources - Pediatric to Adult Health Care

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Type 1 Diabetes in College

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Preventing Hypoglycemia and Hyperglycemia Crises

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Diabetes Education and Self-Care

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Emotional Health

Tips for Teens with Diabetes: Dealing With the Ups & Downs of Diabetes tip sheet from NDEP

The National Institute of Mental Health presents signs and symptoms of depressions, treatment options, and ways to locate services for help

Stress & the Effects on Your Diabetes

  • JDRF’s “Effects of Exercise, Illness, Stress, and Growth on Blood Sugar Levels” – this webpage provides information about the effects of exercise, illness, stress, and growth on blood sugar levels in youth with type 1 diabetes.
  • USDA’s “Teens Talk Diabetes Video” – In this video, teens present their situation with diabetes. They talk about how they reacted to the diagnosis, changed their lifestyle, and dealt with those around them. The main focus is that they don’t let diabetes interfere with their lives; they continue doing the things they like with a few modifications. Some discussion centers on partying with friends and drinking while staying responsible for blood sugar levels. Other topics include stress reduction and getting support from family and friends.

In-Person Diabetes Support Groups

To locate a support group, check with the nearest chapter of the American Diabetes Association, call a local hospital, or look in a local paper.

Online Diabetes Support Groups

  • WebMD has a Q&A with a nurse, RN, MSN, and has online type 1 and type 2 diabetes support groups. exchanges.webmd.com/diabetes-exchange
  • Joslin Clinic has separate discussion boards for adults with diabetes, for teens, and for the parents of teens with diabetes. All are moderated by health care professionals.
  • TuDiabetes.com is a social network for people with diabetes and has about 6,000 members, including many young adults.
  • DiabetesTalkfest.com hosts regular chats with some of the leading experts in diabetes.
  • JDRF online support team – JDRF’s Online Diabetes Support Team website is provided for informational purposes only in order to provide information about Type 1 diabetes, and to share the personal experiences of volunteers related to type 1 diabetes.
  • ADA’s teen and young adult message board provides an outlet for teenagers and young adults with diabetes to discuss unique and common issues related to their disease and to share solutions.
  • www.Juvenation.org is a social network created by JDRF for people with type 1 diabetes. Site users can create a profile, participate in online discussion groups and forums, create and comment on blogs, upload videos, and more. Juvenation is a place to share thoughts, concerns and tips about living with diabetes, learn about new gadgets and technologies, and connect with others who are living with the disease.

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Motivation

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Other Diabetes Topics to Help Young Adults Become Independent

Diabetes and Driving

  • JDRF – Driving and type 1 diabetes - Provides tips for teens on driving with diabetes.
  • dLife – Diabetes and Driving – Provides safe driving answers for people with diabetes.
  • DiabetesMonitor.com – Provides info to newly diagnosed people regarding driving with diabetes.
  • Medical Aspects of Fitness to Drive by Andrew Raffle. Medical Commission on Accident Prevention; 1995. This handbook is provided to all doctors and includes a special chapter on diabetes.

Diabetes during the Teen years

Eating disorders

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Find a Physician, Diabetes Educator, Dietitian, or Education Program

The type of health insurance coverage you have often affects choice of physicians. Most insurance companies provide an online list of physicians by specialty who are covered by the insurance plan.

To find other health care professionals by state or zip code visit:

If you or your family are unable to see a physician due to the cost of care, there may be a local community health clinic in your area. These clinics generally are free or require a small fee: findahealthcenter.hrsa.gov (See more information under Health Insurance below.)

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Visits to an Adult Care Physician

Who’s on Your Health Care Team? (American Diabetes Association)
This site includes information on:

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Health Insurance

Find out how long you will be covered by your parent’s health insurance policy. To learn about new health insurance options ask your doctor for a referral to a social worker and ask your school nurse for information. Find out if you are covered under COBRA. Under a federal law called COBRA (the Consolidated Omnibus Budget Reconciliation Act), employers (with at least 20 employees) must offer former employees, retirees, spouses, widowed spouses, separated or divorced spouses of current employees, and dependent children the right to temporary continuation of health coverage at group rates for up to 18 months.

  • HRSA Health Centers (Health Resources and Services Administration)
    Federally-funded health centers care for you, even if you have no health insurance. You pay what you can afford, based on your income. Health centers are in most cities and many rural areas. Visit findahealthcenter.hrsa.gov: type in your address and click the ‘Find Health Centers’ button to find health centers near you.
  • Tool Kit for the Uninsured and Underinsured (National Women’s Health Resource Center) Find out about health insurance options and resources.

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Health Care Professional Resources

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Non-Diabetes Related Transition Resources

  • Talking with Your Doctor
    This video teaches teens how to effectively communicate with health care professionals so they can learn to take charge of their health. Length: 18 minutes
  • This Is Health Care Transition
    Growing up and becoming an adult is difficult for all youth, but it can be especially challenging for young people with special health care needs. This video was developed to help youth and young adults with chronic health conditions and their families become better prepared for adulthood, especially the move from pediatric to adult health care. Length: 29 minutes
  • Health Care Transition: College & Beyond
    In many ways, Jeff Walden is a typical college student, but in some ways he is not. He was born with a severe physical disability that has posed many challenges on his road to independence. This video explores the process of transition from pediatric to adult health care and the influences that have contributed to Jeff’s success. Length: 24 minutes
  • Health Care Transition: Jim’s Story
    Transition is never easy; however, this process is usually more difficult for young adults with special health care needs who have been receiving care from specialized pediatric treatment settings and providers. This video looks at how Jim and his family prepared for health care transition and their current efforts to complete the process. Length: 10 minutes
  • Healthy & Ready to Work
    This video highlights issues in the transition to adulthood for young people with disabilities and highlights young adults expressing their educational and career goals. Length: 2 ½ minutes
  • Families are the Reason
    This video was designed to inspire and inform families of children with special needs and the professionals who serve them. “Families are the Reason” puts Title V in historical context as part of the Social Security Act of 1935—a program to help mothers and children—and its expansion to include children with chronic illnesses and disabilities. Length: 8 ½ minutes
  • The Best Journey to Adult Life for Youth with Disabilities: An Evidence-based Model and Best Practice Guidelines for the Transition to Adulthood for Youth with Disabilities – Developed by the Canadian government, this 90-page document presents a model for the dynamic and ever-changing developmental process of a young person’s life course, with the transition to adulthood depicted as an important journey. Best Practice Guidelines for the transition to adulthood for youth with disabilities have been written using anecdotes from youth, parents, community members, service providers, educators, and researchers in Ontario, Canada. The guidelines are organized into six main themes that emerged from comprehensive literature reviews, consensus meetings, and focus groups with key stakeholders. Within each theme, guidelines are provided for three key phases of the transition process: preparation, the journey itself, and the landings in the adult world.
  • Transition to Adult Heath Care: A Training Guide in Two Parts – Developed by the University of Wisconsin Waisman Center for Children with Special Health Care Needs, this guide uses a collaborative approach supported by research and real-life experiences. It focuses on some common questions and concerns of the transition stage, while allowing for individual differences in developing a plan for addressing them. Part 1 is aimed at parents of children with special needs, and Part 2 is aimed at youth.
  • Bloorview Kids Rehab (Canada’s largest children’s rehabilitation teaching hospital fully affiliated with the University of Toronto) Growing Up Ready resources:
    • Timetable for Growing Up – This timetable encourages parents to start to thinking about their child’s future by providing ways that they can help their child become more independent with their health care and other areas of life as they grow older. Specific tips are included for various age groups.
    • Getting Started – This checklist helps youth begin to develop the skills they need for growing up and will get them to start thinking about what they would like to do when they grow up. Young people and their families are encouraged to complete this checklist together. Part 1 of a three-part series of checklists.
    • On My Way – This checklist is for youth ages 13 to 16 who have started to gain the skills they need for growing up and have taken steps to begin planning for the future. Items in this checklist focus on taking more responsibility for planning their future. Part 2 of a three-part series of checklists.
    • Almost There – This checklist is for youth ages 17 and older who have developed many of the skills needed for growing up and are preparing to become adults. Items in this checklist focus on skills that will help them prepare for and transition into the adult world. Part 3 of a three-part series of checklists.
    • Guidelines for Service Providers – These guidelines inform health care professionals how to use the three-part checklist series. It includes a section on how to incorporate the day-to-day practices that promote the development of skills needed for growing up.
  • Pediatric Perspectives and Practices on Transitioning Adolescents with Special Needs to Adult Health Care fact sheet – Developed by the National Alliance to Advance Adolescent Health, this fact sheet presents current information on pediatricians’ perspectives regarding the recommended age to begin planning for transition and describes the range of transition services offered by pediatric practices to adolescents with special health care needs. It also identifies the economic and non-economic barriers that pediatric practices face in providing transition support services and presents options for improving pediatric practice training, financing transition services, adult physician availability, and consumer and parent education.
  • Healthy and Ready to Work website - This comprehensive website provides information and connections to health and transition expertise nationwide from those in the know who are doing the work and living it. This website also focuses on understanding systems, access to quality health care, and increasing the involvement of youth. It has provider preparation in addition to tools and resources needed to make more informed choices.
  • Talking with Your Doctor and Other Health Care Professionals website - This website, developed with funding from Children’s Medical Services, builds on the communications model that was originally presented in the “Talking with Your Doctor” DVD, and includes video segments as well as additional tips and strategies to help youth and young adults communicate more effectively with health care providers.

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Parent Resources

Books for Parents

There are numerous books to help parents deal with their son or daughter’s transition to college. Although not diabetes specific, they provide strategies, suggestions, and helpful tips for parents helping their child from a distance, and for adjusting to their child’s absence. Here are three examples. An online search will identify many more.

  • Letting Go: A Parents’ Guide to Understanding the College Years by Karen Coburn & Madge Treeger. Quill Publishing; 4th Edition, April 2003.
  • Don’t Tell Me What to Do, Just Send Money: The Essential Parenting Guide to the College Years by Helen Johnson and Christine Schelhas-Miller. St. Martin’s Griffin; May 2000.
  • You’re On Your Own (But I’m Here if You Need Me): Mentoring Your Child During the College Years by Marjorie Savage. Simon & Schuster; July 2003.
  • Transitions in Care: Meeting the Challenges of Type 1 Diabetes in the Young Adult Period for Patients, Their Families, and Health Care Providers by Wolpert, Anderson, and Weissberg-Benchell. American Diabetes Association; 2009.

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Participation in Research

People with diabetes and family members may wish to participate in diabetes clinical research studies. Clinical trial research in humans is the final step before a new drug or treatment is approved. It is through clinical trials that a cure for diabetes will be discovered. The decision to participate in clinical research is very personal and should be made carefully after speaking with your doctor, family, or others you trust.

  • The Juvenile Diabetes Research Foundation International (JDRF) lists the clinical trials it funds at www.jdrf.org/index.cfm?page_id=101984. JDRF also lists research being conducted by other institutions and organizations where you can find a description of each study, what you could expect if you joined a study, and whom you may contact for more information.
  • The National Institutes of Health (NIH) ClinicalTrials.gov website answers some of the most frequently asked questions about current studies.

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Spanish Language Resources

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Transition Workbooks, Checklists & Guides

Florida Developmental Disability Council, Health Care Transition Initiative, University of Florida Online Training Program – This training program is a product of the Health Care Transition Initiative at the University of Florida. This program is divided into five chapters: Introduction to Health Care Transition; The Consumer Perspective; School, Vocational, and Legal Systems; Promising Practices for Health Care Transition Developing Health Care; and Transition Plans. Each chapter includes four to five presentations with an accompanying 15-minute audio track. In addition, video clips, written documents, and a resource section are included. Users can go through the training program at their own pace, stopping and starting as necessary.

 

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