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Parenting an Adult Child with Disabilities: Talking About the Future

Ben in the middle with Dad (left), Carla Payne with Aging Care Matters and Mom

This is the first of several posts about parenting an adult child with a disability. Ben will be 19 this summer; I am learning along the way. As always, I hope to pass on resources and wisdom.

Discuss the future. If your adult child is able to participate in planning for their future, ask them how they envision it. Let them draw a picture. Ask them to tell you a story. Maybe they can sign a few words that mean a lot to them. Find a way to get them involved.

  • How do they see themselves living? By themselves, in a group home, with another family or with a sibling?
  • Where do they want to live? In another city, in an apartment, in a house?
  • How far away do they want to live from family?
  • What level of independence can they handle? Do they want someone to check in on them?
  • Do they want to find a job? Do they need a job coach or supportive employment?
  • Who will help them with their finances? Is there someone they trust to help them?
These are all tricky questions and based on your adult child's abilities, they may or may not be able to be part of this discussion. Of course, safety and medical care need to be the number one focus for your child. Include family, siblings, therapists, care managers or other professionals who know your son or daughter.

Agree on a plan and then be flexible. Your partner, spouse and/or other children need to be a part of the discussion about your adult child's future. 

Sometimes a sibling is willing to take over care of their brother or sister once the parents can no longer do so. 

A disagreement about placing someone in a group home can cause issues between family members. Talk about everyone's concerns. Look at alternatives. Come up with a plan and then know it can change for a variety of reasons, known and unknown.

Talk with family and friends. Let your loved ones know about your intentions for your adult child's future living arrangements. Unfortunately, extended family and friends may have opinions about what they think you should or should not do. We did not have this issue but we made our plan clear and did not ask for anyone's opinions. 

"Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges.


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