Giving Teens a Voice in Health Care Decisions

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Parents

Lea este articulo en EspanolSince your child's miraculous entry into the world, you've been responsible for most if not all of the decisions made regarding his or her health care. You scheduled the early-morning doctor's visits, arranged for X-rays and other diagnostic tests, ordered prescriptions from pharmacies, asked the right questions, and usually got the answers you needed.

As the parent of a preteen or a teen, your job's not over yet. But by now, your child is able to grasp medical concepts and understand the basics of managing his or her own health care. Experts say that now's the time to start including teens in health care decisions and let them take a more active role in managing their own care.

Why Include Teens?

Time flies. Before you know it, your 13-year-old will be driving and your 16-year-old will be off at college. With adulthood just around the corner, now is the time to begin encouraging teens to take on more responsibility for managing their own lives — and their health care is part of that.

By encouraging their participation (which can be as simple as calling in a prescription and picking it up at the pharmacy or as complex as helping choose a new care provider), you'll help your teens learn valuable lessons about planning in advance, making choices, and being held accountable for themselves. These are all skills that will aid them in adulthood.

Involving Kids

As the parent of any preteen or teen knows, giving kids new responsibilities doesn't necessarily mean that they'll follow through on them. It's still up to you to encourage, remind, reinforce, and follow up on the responsibilities you've given your child.

As kids get older, it's especially important for those with chronic conditions, like asthma or diabetes, to become more knowledgeable about their illnesses and self-reliant when it comes to medical care.

Kids with special needs and developmental disabilities can also learn to manage some (or many) aspects of their care. It often helps to get the green light first from a doctor, social worker, or other medical professional on how and when to begin transitioning your child into more independent living.

Recommended Age-Appropriate Guidelines

At around age 12:

  • Explain any medical conditions in age-appropriate language that your kids can understand, then have them paraphrase it back to you. This helps kids learn about their diagnoses.
  • Encourage kids to spend time alone with medical professionals (without you in the room). This helps establish trust within the patient-provider relationship, and allows kids to speak candidly and ask questions they might be too fearful or embarrassed to ask in your presence.
  • Have your kids learn what medications they take and why. If a child has any allergic reactions to medicines, like penicillin, now's the time to share that information.
  • Kids who have a chronic condition should know who to contact for medical equipment or supplies that might be needed.

At around age 14, in addition to the previous list, teens should:

  • Know any personal history of major medical conditions, hospitalizations, operations, or treatments.
  • Be aware of family medical history (for example, does diabetes or heart disease run in the family? Did someone die of cancer?).
  • Have the contact information for all current and previous doctors.
  • Know how to fill a prescription and refill a prescription.
  • Have a current list of medicines and dosages.

At around age 17, in addition to the previous lists, teens should:

  • Look into selecting an adult primary care doctor. Often, kids choose to visit the family doctor that their parents visit.
  • Have or know where to get copies of medical records (for example: from school or the doctor's office).
  • Know their health insurance information and how to contact a representative.
  • Know how to get referrals to specialists, if needed.
  • Know the limitations of health insurance coverage once they reach adulthood.
  • Plan ahead for medical coverage as an independent once parents' coverage expires for dependents.
  • If necessary, meet with the local Social Security office to apply for benefits.

Considerations for Kids With Special Needs

Kids with special needs or chronic conditions may need additional support to transition into adult-based health care. If your child has special health needs, consider contacting the local chapter of your child's diagnosis-specific group (for example, the National Association for Down Syndrome) to learn how other parents have helped their kids become more independent in adulthood.

Families who've already gone through this transition can offer a wealth of information, such as which doctors specialize in treating adults with special needs, what special services are available, and what programs to look into or avoid.

Another resource that might be helpful are family advocacy groups. Many dedicate themselves to helping families of kids with special health care needs. For example, the nationwide Family Voices organization has local chapters that can help families make informed decisions about health care for kids with special needs.

Now is also a good time to talk to a social worker in your area (who may be affiliated with your local hospital) to find out what federal or state-run programs your child might be eligible for in adulthood. In addition to health-related services, some of these offerings might include support for finding employment, housing, and transportation.

In some cases, you might be able to enroll your child (or at least get on the waiting list) in these programs now. Doing so might seem a bit premature, but can pay off later, when the need for services might be more immediate.

Leading the Way

Whenever possible, involve your kids in making health care decisions. Though it might take some extra effort and a bit of patience on your part at first, your kids can become more independent when managing their own health care.

With you there to provide support and guidance along the way, your kids can take that first big leap into adulthood while still having you as a safety net.

Reviewed by: Steven Dowshen, MD
Date reviewed: October 2015
Originally reviewed by: Cory Ellen Nourie, MSS, MLSP



Related Resources

Web SiteFamily Voices This website brings together families who have children with special health needs.
OrganizationAmerican Medical Association (AMA) The AMA has made a commitment to medicine by making doctors more accessible to their patients. Contact the AMA at: American Medical Association
515 N. State St.
Chicago, IL 60610
(312) 464-5000
OrganizationCenters for Medicare and Medicaid Services This website contains all the information you need to understand your health care.
Web SiteAdolescent Health Transition Project This is a health and transition resource for adolescents with special health care needs, chronic illnesses, and physical or developmental disabilities.
Web SiteEmergency Information Form for Children with Special Needs The American Academy of Pediatrics (AAP) has a form for all the vital information about the child's condition, and the doctors and other key contacts in case of an emergency. It's a good idea to post it near the phone, in the car, and in a prominent common area in the house.
Web SiteSpecial Needs Answers Special Needs Answers offers information to help plan the future of kids with special needs, including a searchable attorney database to find someone who can answer legal questions and assist in planning.
Web SiteThe Special Needs Alliance The Special Needs Alliance helps people with disabilities, their families, and the professionals who represent them. Find national and local services and support programs, get answers to questions about finances and disability benefits, or search the attorney database to find help with legal matters.
Web SiteAcademy of Special Needs Planners Helping parents and others in planning for their own futures and for those of family members with special needs.
Web SiteInsureKidsNow.gov InsureKidsNow.gov provides information about Medicaid and CHIP services for families who need health insurance coverage.
OrganizationThe Health Insurance Marketplace Consumers can learn about, compare, buy, and enroll in health insurance at HealthCare.gov, the official site for the Health Insurance Marketplace.


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Note: All information is for educational purposes only. For specific medical advice, diagnoses, and treatment, consult your doctor.

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