As difficult as it is to imagine a future for your disabled child that does not include you, his most devoted caretaker, it's crucial that you make plans to ensure that his future is as secure as possible. Here's how:

Gather your family

Start by asking for your family's thoughts. You might be pleasantly surprised when family members step forward and volunteer to be your child's guardian or caretaker. Or, you might be disappointed to hear that someone you were counting on is simply not up to the task.

Seek legal advice

Financial and legal arrangements must be established to ensure there will be enough money and resources to provide for your child, but also that those resources won't stand in the way of your child receiving benefits like Social Security Disability Insurance, Medicare, military benefits, subsidized housing and other services. Talk to an attorney who specializes in meeting the needs of disabled adults. Ask about:

  • Special Needs Trusts
  • How to establish a guardianship
  • Who will advocate for your child
  • How to write a letter of intent that spells out what you do and don't want for your child.

Consider housing options 

Group homes, adult foster care and assisted living facilities are all viable options that might suit your adult child's needs. In fact, the socialization and friendship opportunities these living arrangements provide might be key to helping your child deal with the loneliness, grief and isolation he might feel after you're gone. Ask the health care providers—physicians, social workers, case managers and therapists—involved in your child's care for recommendations for good housing options. Then, tour these facilities, inquire about waiting lists and check references thoroughly.

Get the right help 

Plenty of resources are already available to help disabled adults live their lives as safely and fully as possible.

  • Contact your county health department or other local health agency in charge of providing services for disabled adults.

Get the Right Support

The transition to life without you as primary caretaker and companion will be difficult for your child. Help him (and yourself) process the potential changes he'll experience through professional counseling, enriched friendships, church groups, support groups and community organizations. Give your child as much time as possible to get to know the new people in his life who will help the days ahead feel familiar, safe and secure.