Finding Adult Health Care
Tips for the Medical Home
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 (
18 KB).
- Create a written Transition Self-Assessment ( 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.
What Youth and Families Want
Identifying health care providers with knowledge of specific conditions
Developing a new relationship with adult health care providers
Adapting to new service delivery approaches
Changes in health care coverage and insurance
Tips for Youth and Young Adults
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.
126 KB).
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
- 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 ( 18 KB) and a summary of
your Family History (
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 ( 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 (EIF) for Individuals with Special Health Care Needs (ACEP))
- 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 ( 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 ( 32 KB)
This sample timeline from the Intermountain Collaborative, 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 ( 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.
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 ( 35 KB)
A press release about results from the Medicaid Cash and Counseling demonstration project underway in Arkansas.
Sexuality and People with Disabilities ( 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 ( 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 ( 12 KB)
A sample transition action care plan.
All About Me ( 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 ( 12 KB)
This sample summary form can be adapted and includes diagnosis, medications, surgical history, and more.
Family History ( 110 KB)
An example of a log to note family history of health conditions.
Medication Tips ( 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 ( 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.
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.