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Finding Adult Health Care

Tips for the Medical Home

As youth with special healthcare needs grow into adulthood, they will need to transition from pediatric healthcare into adult medical care, requiring them to find a new care provider. Building a rapport with a new doctor will be easier when the child has made a gradual move toward self-advocacy and managing his/her own health care during the teenage years.
The goal in transitioning to adult health care services is to maximize lifelong functioning through high-quality age-appropriate healthcare services that are coordinated, continuous, and comprehensive.
All adults with special healthcare needs deserve an adult-focused primary care physician. This affirms that adults benefit from physicians who are experienced and trained in adult medicine.

Role of the Medical Home

  • In partnership with the youth and family, identify an adult healthcare professional who can attend to the unique challenges of the disorder and accepts the individuals health insurance.
  • Prepare and maintain a portable up-to-date Medical Summary (PDF Document 18 KB).
  • Create a written Transition Self-Assessment (PDF Document 83 KB) by age 14.
    • Include what services need to be provided, who will provide them and how they will be financed.
    • Incorporate preventive care in the plan
  • Ensure continuation of health care coverage.
To access the AAP policy statement on transitions written by the American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians-American Society of Internal Medicine, visit: A Consensus Statement on Health Care Transitions for Young Adults with Special Health Care Needs.

What Youth and Families Want

Transitioning to adult health care can sometimes be an overwhelming process for both parents and youth. This section is based on interviews with parents and young adults with special health care needs and provides perspectives on the transition into adult healthcare systems. Some common concerns during this change are discussed below.

Identifying health care providers with knowledge of specific conditions

This was the most prominent concern among parents, family members and young adults with special health needs or disabilities. One young person described a particular concern: "My pediatrician and I had a good rapport about my health needs. When I had shunt problems at age twenty, she was able to immediately identify the issue just by looking into my eyes and assessing a few other symptoms. I don't know if that will be possible with my new doctor because she doesn't know me that well and I'm her first patient with Spina Bifida."

Developing a new relationship with adult health care providers

Developing rapport, trust and confidence with a new healthcare provider was a concern voiced by all young people interviewed. They were concerned about how long it would take to develop a relationship and how receptive the healthcare provider would be to their specific needs.

Adapting to new service delivery approaches

Parents were concerned about changes in the level of their involvement in their youth's medical care. Pediatric/adolescent care actively involves the parent and/or other family members. This is not normally the case with adult care, which tends to focus only on the patient, with the assumption that they can manage their health care independently.

Changes in health care coverage and insurance

Parents expressed concerns about possible changes in healthcare coverage as their children made this transition. Under some insurance plans, a variety of conditions must be met in order to maintain prior coverage. In some cases, families found it necessary to access Medicaid because their children no longer met the age or dependent status criteria of private insurance.
One parent shared an experience in which transition took place very abruptly for her son with special health needs. Both, the practitioner and family thought the health insurer covered the patient until age 25, but found out that it only covered those patients 21 years and younger. This resulted in an interruption of care for her son. Additionally, because her son had complex needs, there was inadequate time to become familiar with their new healthcare practitioner.

Tips for Youth and Young Adults

So, how do you find a doctor who will meet your youth's medical needs, whose services will be covered by your health plan, and who can provide the care you are looking for?

Before you start looking for a new doctor, think about what you want:

  • Is the office location important?
  • Will you need help with transportation?
  • Do you need an office that is wheelchair accessible or do you need other special assistance in the doctor's office?
  • Are office hours convenient?
  • How do you contact the doctor at other times?
  • What hospital do you want to use, and is this doctor on the staff there?
  • Which is most important to you: someone who will take time with you during an office visit, or someone who is an expert in his or her field but whose time with each patient is more limited?
  • How important is it that your new doctor is knowledgeable about your condition?
  • Do you think you can provide the doctor with information about your condition or connect the new doctor with those who could provide specific medical insight?

Strategies to consider in your search for a new doctor:

  • Ask your current doctor for possible references.
  • Check out the doctor your parents or other family members see.
  • Call a family support group or adult disability agency for options.
  • Ask for recommendations from adults who have health needs similar to yours.
  • Refer to your health insurance company booklet of approved providers.
  • Ask a Vocational Rehabilitation or Independent Living Center counselor.
  • Find a university health center (sometimes there are research studies going on which offer free care).
  • Contact your local medical society, American Academy of Family Practitioners, or internal medicine society either through the Yellow Pages or on their national websites for referrals.
  • To find agencies or other community services mentioned above, see Services Directory.
Since your wellness depends on the medical services you receive, it is important that you are comfortable talking with your new doctor and feel that he or she understands your concerns. Consider scheduling a "get-acquainted" interview before you make a final choice of a new doctor. You will have to pay for this visit, as it is NOT normally covered by insurance benefits. An ideal interview time is about 15 to 30 minutes and should not waste your time or the doctor's. To learn how to communicate with healthcare professionals, see Communicating with Doctors and Other Health Care Providers (PDF Document 126 KB).
The best time to see a new physician is when your health condition is stable so you aren't asking for crisis care while getting acquainted with a prospective health care provider.

Think about (and write down) questions that are important to you:

  • Is the doctor knowledgeable about your health issues and/or willing to learn from you and from previous doctors?
  • Do you like the communication style with the doctor and in the office?
  • Are you satisfied with office practices and access during an emergency or in urgent situations?
  • Do you have access to hospitals and specialists if you need them?

Tips for learning to manage your own health care

Doctors who like to care for children are different from doctors who like to care for adults. For this reason, young adults learning to manage their own health care need to develop certain skills:
  • Ability and willingness to tell the doctor about your history, current symptoms, lifestyle, and self-care in just a few minutes. Always carry your own records, including a Medical Summary (PDF Document 18 KB) and a summary of your Family History (Word Document 110 KB).
  • Ability to ask questions about your condition and how it will affect your school, work, recreation, and social life. See Employment/Daytime Activities and Recreation Activities.
  • Ability to tell the doctor about your needs for education, technology, and accommodations and how your condition affects or might be affected by these. See Education.
  • Willingness to follow medical recommendations that have been mutually developed by you and your doctor.
  • More independence in following up with an Action Plan (PDF Document 12 KB) and keeping all agencies informed.
  • More involvement in keeping yourself well:
    • with diet and weight control, exercise, and recreation;
    • following medication, treatment and hygiene regimens;
    • limiting risk-taking behaviors (such as drinking alcohol, smoking, taking non-prescription drugs, or unsafe sexual practices);
    • and getting help when you feel angry, lonely, or sad for long periods.
  • Awareness of your physical and mental symptoms and health needs before you have a serious medical crisis and knowing when to inform your doctor.
  • Developing a plan for emergency care: (see Emergency Information Form for Individuals with Special Health Care Needs (EIF))
    • when to consult with the doctor;
    • what hospital to report to;
    • what care you want and do not want; and
    • naming someone who can let your wishes be known if you cannot (health care surrogate).
  • Understanding your health care benefits/insurance plan: (see Health Insurance/Financial Aids)
    • when to call for pre-approval,
    • how to get reimbursements,
    • what services are not covered, and
    • how to file an appeal if you do not agree with decisions made by the plan.
  • Recognizing that as you become more capable in directing your own care that you, not your parents, should:
    • make medical appointments;
    • be the most knowledgeable about your health needs;
    • know when to seek guidance in solving problems; and
    • demonstrate that you are capable, competent, and ready for adulthood!

Resources

Information & Support

For Professionals

Taking Charge of Your Health Care (PDF Document 117 KB)
From the Institute for Community Inclusion at Children's Hospital, Boston, this handout provides a list of items for adolescents and young adults to consider as they transition to adulthood and begin using adult health care services.

Guidelines for Adolescent Preventive Services (GAPS)
A comprehensive set of recommendations that provides a framework for the organization and content of preventive health services.

Policy Statements American Academy of Pediatrics
AAP Policy Statements, Clinical Practice Guidelines, Technical Reports, Affirmations of Value, and Parent Pages. These codify the role of pediatricians and other primary care providers in providing comprehensive care for children with chronic and complex conditions and define the Medical Home concept and applying it to all children, with a particular emphasis on Children with Special Health Care Needs.

Transition Timeline (PDF Document 32 KB)
This sample timeline from the Intermountain Collaborative in Utah, for ages 2-22, provides suggestions for things that parents and providers should be teaching and checking as children transition through different age ranges and on to adulthood.

Health Transition Tools (Word Document 102 KB)
This 4-page handout provides a list of tools and web sites that provide transition information for youth, young adults, families, and providers; from Healthy and Ready to Work, www.hrtw.org

For Parents and Patients

healthfinder.gov
This is an award-winning Federal Web site for consumers, developed by the U.S. Department of Health and Human Services together with other Federal agencies. Enter your term in the search box for easy to use definitions and current information.

Healthcare Transition Resources
Web, video and print resources developed by the Florida Health and Transition Services (HATS), University of Florida.

http://health.gov/
This is a portal to the websites of a number of multi-agency health initiatives and activities of the Office of Disease Prevention and Health Promotion.

Healthy and Ready to Work
Information and connections to health and transition expertise nationwide, for families and providers from those in the know, doing the work and living it. This site focuses on understanding systems, access to quality health care, and increasing the involvement of youth. It also includes provider preparation plus tools and resources needed to make more informed choices.

Male Screenings
Screening tools for males to check their own health, from Utah's Check Your Health.

Testicular Self Exam
For men, starting at age 15, monthly self-exams of the testicles are also an effective way of getting to know this area of your body and thus detecting testicular cancer (TC) at an early -- and very curable -- stage.

girlshealth.gov
A website developed by the Office on Women's Health in the Department of Health and Human Services, offering girls between the ages of 10 and 16 reliable, current health information. A special feature is a Disability and Chronic Illness section for girls.

Table Manners and Beyond
The gynecological exam for women with developmental disabilities and other functional limitations was put together for women with developmental disabilities and their care providers. It offers information on many topics besides exams, including midwives, birth control, midlife issues, a sample questionnaire, as well as a lot of useful information for actually giving an exam including how to reduce stress. Women's Wellness Project 2001.

Breast Health Access for Women with Disabilities
A community partnership of women with disabilities, breast cancer survivors, medical professionals, and grassroots disability rights organizations located in Berkeley, California. BHAWD Mission Statement: To increase the access of women with disabilities to breast health information, screenings and early breast cancer detection.

Medicaid Recipients Benefit from Self Care Direction (PDF Document 35 KB)
A press release about results from the Medicaid Cash and Counseling demonstration project underway in Arkansas.

Sexuality and People with Disabilities (PDF Document 257 KB)
This Medical Home newsletter provides information for primary care providers and families including Sexuality and People with Disabilities; American Academy of Pediatrics recommendations for education about sexuality; tips for parents; and resources, books, and websites for parents and providers.

Gynecological Providers for CSHCN (PDF Document 114 KB)
Gynecological providers in Utah who self-identified a willingness to treat children and youth with special health care needs in a 2005 survey to all Utah gynecologists.

Physician's Referral Directory
Find physicians in Utah, from the University of Utah Health Sciences Center.

Action Plan (PDF Document 12 KB)
A sample transition action care plan.

All About Me (PDF Document 110 KB)
This 31-page transition notebook for teens has forms for infomation including emergency contact; providers; personal and family history; insurance; appointments; and medications. The first page has a place to put your picture and the last few pages have a brief listing of suggested state (Okalahoma) and national resources.

Youth Leadership Toolkit
Guide book and DVD videos for youth/young adults, parents, medical providers, and other professionals with tips from young adults to assist in transitioning to adulthood. Includes transportation, finding adult health care, healthy relationships, employment/volunteering, self-advocacy and independent living. Developed by Independent Living Research Utilization (ILRU) in collaboration with the Center for Persons with Disabilities and the Becoming Leaders for Tomorrow Project.

Transition Summary (PDF Document 12 KB)
This sample summary form can be adapted and includes diagnosis, medications, surgical history, and more.

Family History (Word Document 110 KB)
An example of a log to note family history of health conditions.

Medication Tips (PDF Document 35 KB)
One-page of tips about taking and monitoring medications from the Kentucky Commission for Children with Special Health Care Needs.

Youth/Young Adult Transition Needs Assessment (Word Document 91 KB)
A worksheet to help the youth or young adult determine strengths and needs to help prepare for transition to adulthood; from the Utah Family Voices Health Information & Support Center.

Authors

Contributing Authors: Robin Pratt - 12/2005
Barbara Ward, RN BS - 12/2005
Gina Pola-Money - 12/2005
Joyce Dolcourt - 12/2005
Kristine Ferguson - 12/2005
Teresa Such-Neibar, DO - 12/2005
Lynn Foxx Pease - 12/2005
Helen Post - 12/2005
Roz Welch - 12/2005
Reviewing Author: Alfred Romeo, RN, PhD - 11/2008
Content Last Updated: 11/2008

Funding/Support

Thank you to the Utah Medical Home Young Adult Advisory Committee for reviewing this section.

Excerpts used with permission from Kentucky Commission for Children with Special Health Care Needs, KY TEACH Project, MCHB Healthy and Ready To Work Projects, and Shriners Hospitals for Children.