Your Adult Child With Disabilities: A Caregiving Guide
If you have a child with disabilities who is nearing adulthood, you have a lot of plans to make. Not only do you need help right now to ensure your child's adulthood is as fulfilling and independent as possible, but you also need to plan for your child's future, and one that might not include you. Where do you begin? We've started your checklist for finding resources to help you launch your disabled child into a safe and nurturing adulthood.
Start your resource planning with a list of questions including:
- Will my child live at home or does she need group housing or assisted living arrangements?
- Does she need ongoing assistance with activities of daily living or can she manage independently?
- Can my adult child work?
- What kind of transportation will he need?
- Is he eligible for Social Security Disability Insurance?
- Is she eligible for Medicare insurance?
- Are there support groups nearby who can help connect our family to caregivers?
- What kind of long-term financial planning do I need to make?
- Who can care for my child if something should happen to me?
- Where can I get support?
Some of the answers to your questions about how to care for disabled adults is as close as your child's physician's office. This is especially true if your physician has known your child a while and understands his special needs. Ask your child's doctor to help you connect with resources and support services that apply specifically to your child and those that apply to all disabled adults.
- Log on to the Social Security Disability Insurance website to find out what type of financial and medical support he's entitled to. http://www.socialsecurity.gov/
- Log on to the Americans With Disabilities Act website to learn about your child's rights and the services she's entitled to. http://www.ada.gov/
- Contact your county health department or other local health agency in charge of providing services for disabled adults. They'll be an excellent resource for local caregivers, specialists, support groups, and other services that are appropriate for your child.
- Look up national and local organizations that focus specifically on your child's disability. Look for a "resources" tab. For example:
The Autism Society (http://www.autism-society.org/)
United Cerebral Palsy (http://www.ucp.org/)
National Association for Down Syndrome (http://www.nads.org/)
- Talk with family members about how much support they can provide. It's important these conversations take place as far in advance as possible. Don't make assumptions about family members' availability and ability to commit time and care.
- Talk with an attorney and long-term care and financial advisers about financial and living arrangements for supporting your child in the event something happens to you.
- Ask your doctor for information about home health and respite care for times when you need a break or in the event you need temporary help with caring for your child at home.
- Contact your city's public transportation department and find out about transportation services for disabled adults.
- Find support groups for parents and families who live with adult children with disabilities. Not only will this provide essential emotional support for you, but support group members will also be excellent sources of information about services available in your area.
Keep a running list of questions with you as you investigate the best ways to care for your disabled child. The more information you have, the better equipped you'll be to ensure a safe and secure adulthood for your disabled child. It will be that security and your careful planning that will give you peace of mind knowing your child will continue receiving the best care possible.
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