Caring for Your Teen With Cerebral Palsy (CP): Age 13 and Up
When your teen has cerebral palsy (CP), planning for the future involves more than choosing a college, trade school, or other path. There might be special health care needs that will take preparation and planning as your child becomes a young adult. By thinking ahead and working with your child’s school, doctors, and your state's government agencies, you can help make the move to adulthood as smooth as possible.
Here are 7 steps to consider as you plan for life after high school.
Step 1: Register for State Benefits
If your child will continue to need therapy or other services into adulthood, register with your state's developmental disabilities agency. This branch of state government must be made aware that your child has disabilities. To learn about benefits available to your child and how to apply for assistance, visit the U.S. government's online Benefit Finder.
For your child to qualify for a group home placement as an adult, registration is needed. And because the wait for group home placement can be up to 10 years, the sooner you register, the better.
Step 2: Start the Transition IEP
Some schools start planning for a teen's future at age 13 or 14; by federal law, a transition individualized education program (IEP) must be started by age 16. The transition IEP addresses whether a child can complete the educational requirements needed for a high school diploma. If your child is not on the diploma track, find out what’s needed to earn a certificate of completion or attendance.
You’ll also talk about your teen’s goals for the future. Young adults with cerebral palsy can stay in school until age 21. However, they can only stay until they graduate. If your child is eligible at 18 for the diploma, you may want to talk to your child's school about deferring it until age 21.
Step 3: Explore Young-Adult Education
After high school, teens may attend college or vocational school, get a job, or do volunteer work. Many communities have young-adult education programs that teach life skills, such as cooking, cleaning, job training, and financial literacy. To learn what programs are available in your area, talk to your school guidance counselor or local Office of Vocational Rehabilitation.
When you know what next steps your teen will take, be sure to add this information to the transition IEP.
Step 4: Look Into Living Arrangements
Now’s the time to start thinking about life after graduation. Where will your child live? Some people continue to live at home, while others may live:
- in a group home with assistance
- in a house with shared duties
Look into these options early — as young as age 13 — because waiting lists can be long. The transition IEP can help you plan for these living arrangements, and include education to support that goal. For example, teens who will live out of the house can get life skills training, such as how to take a public bus, how to manage money, or how to cook healthy meals.
Step 5: Do the Legal Work
A big part of planning for the future is making sure your child will have the financial means to live comfortably and get the right care, when needed.
- Guardianship. When teens turn 18, they are considered adults in the eyes of the law. If your child cannot make medical or financial decisions, consider applying for a power of attorney. This will let you continue to make decisions on your child's behalf.
- Health insurance. Your child can remain on your private health insurance until age 26. After that, Medicaid may be the only option. Look into this early.
- Social Security and Supplemental Security Income (SSI). People with disabilities are eligible for these government benefits. Find out how to ensure that your child gets all benefits they're entitled to.
- Savings accounts. A financial advisor also can help you save, set up trusts, and use government benefits like SSI to help plan for your child’s future.
- Advance directives, like a will. Take another look at your will. You might have other children who are becoming adults and could serve as trustee for your child's special needs trust. Consider talking with your other kids about the care your child will need in adulthood, and whether they want to be involved in that care.
Step 6: Address Issues of Sexuality
Your teen's body is maturing into adulthood. This means they can — and might want to — engage in sexual relationships. If your child is able, talk about protection from unwanted pregnancy and sexually transmitted diseases (STDs).
People with developmental disabilities are more likely to be victims of sexual assault. So be sure to talk to your teen about the differences between appropriate touch and inappropriate touch. Ask them to come to you right away if they ever feel uncomfortable in a situation or harmed.
Step 7: Find New Doctors
You may have relied on the same team of doctors and therapists for your child's entire life. But most child-focused health care providers will require that your teen transition to adult care by age 21.
When your teen turns 15, start searching for doctors and therapists who treat adults with CP. First, ask your current health care providers for referrals. Also talk to friends who have older kids with CP to see if they can recommend anyone.
By addressing your child’s needs and wants for the future — and planning as best you can — you both will be ready for this next exciting stage of life.