If you are caring for a child with a disability, you must plan for the future. The day will come when you can't care for him or her. Planning now saves your child from sudden and difficult changes later.
The process might seem scary. Take one step at a time. You might find resources that can help you now?and in the years to come.
Step 1. Contact the local county or city office that provides services for people with disabilities. Find out what is available in terms of:
- support groups for caregivers
- therapists and other professionals to help your family through the transitions
- residential options for adults with your child's type of disability
Step 2. Learn about government benefits for your child. The Social Security Administration's publication ?Benefits for Children with Disabilities? gives detailed information, at www.ssa.gov/pubs/10026.html#older-children. Here's a brief overview of programs:
- Supplemental Security Income (SSI) payments are for children with disabilities. (SSI is not the same as Social Security.) To learn more, locate your local Social Security office at www.socialsecurity.gov/locator/.
- Social Security Disability Insurance (SSDI) is for adults disabled since childhood (before age 22). It is paid on a parent's Social Security earnings record.
- Medicaid is a health insurance program that is funded by federal and state governments. It is based on income or need. For information, call your local Social Security office, state Medicaid agency, or state or county social services office.
- Medicare is a federal health insurance program for people age 65 or older and for people who have been getting Social Security disability benefits for at least two years (with some exceptions).
Step 3. Prepare your child, yourself and your family.
- Talk to your family about what's involved in caring for your loved one. Before anyone commits to taking over as caregiver, make sure they are really prepared to do it.
- Find out how much a residential program will cost, and start saving. Estate laws vary by state, so work with a financial planner and a lawyer to protect your child's future.
- It's never too early to let the local service agency know your long-term plans for your child. Residential programs might have a waiting list. If you have one in mind, let them know at what age your child will be making the transition.
- Help your child become more independent. Teach him or her to wash and dry a load of laundry or make a simple meal. This increases confidence all around!
- Expand your child's social horizons. Get him or her involved in Special Olympics and social clubs for others with disabilities.
Expand your own social horizons. Join a bike club or take a cooking class. Dare to dream about the projects and plans you've put off.
Hartwell-Walker M. Future planning for your intellectually disabled adult child. Psych Central. Accessed August 7, 2008. Available at http://psychcentral.com/lib/2007/future-planning-for-your-intellectually-disabled-adult-child/.
Social Security Administration. Benefits for Children with Disabilities, SSA Publication No. 05-10026, January 2008, ICN 455360. Accessed August 7, 2008. Available at www.ssa.gov/pubs/10026.html#older-children.