Cerebral Palsy Checklist: Teens & Young Adults
Once your child becomes a teenager, planning for the future turns to life after high school. Where will your child live once he or she is an adult? Is vocational school an option? How about college? And then there's the issue of sexuality. No matter what your child's emotional age might be, physically he or she will be maturing into an adult body.
It's a lot to consider, but transition planning can help. With forethought and help from your child's school, doctors, and your state's government agencies, you can make the move to adulthood as smooth as possible for you and your child.
Here are 6 steps to consider.
Step 1: Register Your Child
Register your child with your state's developmental disabilities agency. This branch of state government must be made aware that your child has special needs. Registration is required in order for your child to qualify for a group home placement as an adult. And because the wait for group home placement can be as long as 10 years, the sooner you register, the better.
To learn more about the benefits available to your child and how to apply for assistance, visit the U.S. government's Benefit Finder.
Step 2: Start the Transition Plan
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 is able to complete the educational requirements needed for a high school diploma. If your child is not on the diploma track, what will it take for him or her to earn a certificate of completion or attendance?
If going to college or trade school is an appropriate goal for your child, the IEP will detail how your child will get there. If higher education is not possible, maybe employment (with or without support from a mentor) or a day program (in which your child engages in the arts and other activities) might be a better option. The IEP team will talk with you and your child about goals for the future.
The transition IEP also addresses where your child will live in adulthood. If independent living, institutionalized care, or a group home are options, the IEP will outline what supports need to be in place to make this possible. This could include instruction on the basics of navigating the world alone, such as how to take a public bus, or lessons on how to manage money and plan healthy meals.
Step 3: Explore Young-Adult Education
Young adults with cerebral palsy are entitled to remain in school until age 21. However, they can only stay until they graduate. So 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.
Find out if there is a young-adult education program in your school or community. This program focuses on teaching life skills, such as cooking, cleaning, job training, and financial literacy.
Step 4: Do the Legal Work
Once kids turn 18, no matter what their cognitive abilities, they're considered adults in the eyes of the law. If your child cannot make decisions about medical or financial affairs, consider securing a power of attorney. This will allow you to continue to make medical or financial decisions on your child's behalf.
Also, look into health insurance options. Adult children can remain on a parent's private health insurance until age 26. After that time, your child might have to rely solely on Medicaid.
The disability also makes your child qualify for Social Security and Supplemental Security Income (SSI), so find out how to ensure that your child gets all the benefits to which he or she is entitled.
Now is also time to take another look at your will. You might have other children who are coming into adulthood 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 5: Address Issues of Sexuality
Your child's body is maturing into adulthood. This means that he or she can — and might even want to — engage in sexual relationships. If your child is able, have him or her talk to the doctor about protection from unwanted pregnancy and sexually transmitted diseases (STDs).
Unfortunately, people with developmental disabilities are more likely to be victims of sexual assault. So it's important to talk with your child about appropriate versus inappropriate sexual behavior. Let him or her know that you are there to help if any situation feels uncomfortable, or if your child is worried or harmed.
Step 6: Find New Doctors
You may have relied on the same team of pediatricians, specialists, psychiatrists, and therapists for your child's entire life. But by age 21, most child-focused health care providers will require that your child transition to adult care.
Talk with the current care providers for referrals to others who can care for your child in adulthood. Also, friends who have older kids with CP might be able to recommend providers./p>