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Use the medical history forms in the resources section of this guide to help you and your child keep their health care information updated. These forms, which are also available on CD, can be a very useful resource at doctor visits.


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Parents' Section

Tips for Parents

Helping your child understand his or her disability or medical condition is crucial. While you are still the primary care taker, it’s impossible to be there every moment of their lives. As they start to reach out for more independence, they must be prepared to handle the situations they are likely to face.

Here are a few simple tips to help you help your child take charge of his or her health and be better prepared for independence.

  • Be sure and talk to them about their needs in general.
  • Be sure they know their medications’ names and understand the proper dosage. Make sure they can refill prescriptions, if necessary.
  • Make sure they can call their doctor and make or change appointments on their own.
  • Make sure they have the necessary insurance information, ID cards, and phone numbers.
  • Make sure they have and know emergency contact information i.e.- work numbers, doctor’s office, hospitals, family contacts.
  • Let them be an active part of doctor visits–encourage them to ask questions and give answers during health care visits.
  • Begin to talk about transitioning from a pediatrician to a doctor for adults.
  • Discuss and plan out the responsibilities they must start to assume regarding their health care.

Once your child turns 18, you no longer have access to his or her health information. Health care providers must respect the right to confidentiality and privacy as required by law and it’s only through written consent, signed by your child, that you can be made aware of medical information.

For parents of young adults who may have problems making informed decisions about their health this can seem like a scary, even risky, development. Yet, there are steps that parents can take to insure that their child’s health care isn’t compromised. Here are a few things to keep in mind:

  • Set up a network of support. This network can include family and friends, yet it must function within the limits of privacy laws.
  • Obtain signed “release of information” forms so that the family/friends network will have access to medical information if your son or daughter chooses.

This can be a difficult subject as it pertains to an individual’s civil rights. A balance must be struck between legal rights and a person’s well-being. Therefore, while complicated, parents should approach this with careful thought and the young adult’s best interest in mind.

Helping Maintain Health Coverage

Most coverage for dependent children under employee-based health plans ends at age 19. Age limits are set to go up over the next few years with the changes in health care laws, providing coverage up to age 26. If the young adult is a full or part time student, is disabled (as defined by the Social Security Administration), or if you are providing over half of your child’s support you may have more coverage. Be sure to read your plan’s policy on dependent children carefully and be prepared to request continuing coverage from your employer’s plan 5 or 6 months before your child turns 19, especially if your child needs an evaluation from the Social Security Administration.