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Help teens gain medical self-reliance

For some teens, assuming responsibility for their medical decisions is a welcome mark of maturity. For those with special health care needs, the transition to health care self-reliance  may require extra preparation for both teens and their parents.

Timing and teamwork

Bhavana Viswanathan, children and youth program director at the Delaware Division of Public Health/ DHSS in Dover, recommends that parents begin taking steps to begin the transition as early as age 14. “If you wait until they’re 16 to 18, it’s often too late to tap into certain services,” she explains.

Assess your child’s
level of independence

Some families begin the transition by teaching their teens health care communication skills. Bancroft’s Misty Simmons says teens should learn to:

Name body parts and communicate how they feel (hurt, itch).

Explain their diagnosis and symptoms to others.

Have input into choosing their doctor, ask questions and schedule routine medical appointments. Many teens with disabilities may be able to manage their own medications. Simmons says they should strive to:

Identify medications by shape, color and name. Drawings can be helpful with this step.

Match each medication with the time it should be taken; making a chart is useful.

Independently remember to take the right amount of medication at the right time.

Tell an adult when it’s time to take their medicine or have parents watch them take it until everyone is satisfied that the skill has been mastered.

Teens and their school, parents and medical providers should work together to develop a total transition plan, including health care, says Viswanathan. “If there are specialists involved (such as speech, occupational or physical therapists) try to hold a team meeting, because once the child turns 18, things will shift,” she advises.

How much responsibility?

Parents will need to realistically assess what their child can accomplish without supervision, based on abilities and willingness to master new skills. Families may need to take into account issues such as transportation to appointments.

Encourage independence

“Increased independence in every area of their lives is our goal for every student in our programs,” says Misty Simmons, a senior social worker for Bancroft in Camden County, NJ.  “If young adults are able to communicate their feelings and health concerns, they will be much safer and better off. It also gives parents greater peace of mind to know that their child can do certain (health-related) things on their own.”

Developing and practicing a healthy lifestyle by eating well, exercising regularly and getting enough sleep is crucial. “This is a big priority for those of us in public health,” Viswanathan observes.

Be aware

Not all medical professionals treat the disabled. “The best way to find a good doctor is to talk to other parents and the staff of the organizations your family works with,” says Viswanathan.

Some young adults with disabilities can manage a high percentage of their medical needs. But once a child reaches age 18, federal privacy regulations require a signed medical release for medical professionals to legally share information with parents unless they have guardianship.

Sue Henninger is a freelance writer.

Achieving Guardianship

Some students with disabilities may not be able to safely manage the majority of their own health care needs. For these young adults, having a parent obtain guardianship when they turn 18may be the best option. Senior social worker Misty Simmons shares how to do this:

• Make sure you have the necessary documentation beforehand. You will need a psychological exam with an IQ test. Ask your school district for information on how to obtain this.

File documents in your local court, either on your own or with the help of an attorney experienced in disability law.

• Make sure your selection of an adult physician is willing to work with both you and your child.

• Once guardianship is obtained, be sure to provide the doctor with a copy of the papers for your child’s medical chart.

 

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