Giving Teens a Voice in Health Care Decisions

You've been responsible for most — if not all — of the decisions about your child's health care. But if you have teens or preteens, now's the time to start including them in health care decisions and let them take a more active role in managing their own care.

Why Include Teens?

Adulthood is just around the corner. So now's the time to help teens take more responsibility for managing their own lives — and their health care is part of that.

This can be as simple as having them call in a prescription and pick it up or as complex as letting them choose a new care provider. This helps teens learn about planning in advance, making choices, and being accountable for themselves. These are skills they'll need 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. It's still up to you to encourage, remind, reinforce, and follow up on the responsibilities you give your child.

As kids get older, it's especially important for those with chronic conditions, like asthma or diabetes, to learn all they can about their illnesses and be 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 moving your child into more independent living.

Guidelines by Age

At around age 12:

• Explain any medical conditions in age-appropriate language that your kids can understand. Then, have them repeat 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 lets kids speak candidly and ask questions they might be embarrassed to ask in your presence.
• Have your kids learn what medicines 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 when they reach adulthood.
• Plan ahead for medical coverage as an independent when 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 extra support to move 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 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 can help 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. Besides 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 now might seem early, but can pay off later, when the need for services is more immediate.