Do you know an adult with special needs living with elderly parents? Do you have an adult sibling who fits this category?  Have you considered what will happen when your parents die? Will your sibling need to relocate?  Will he or she come live with you?

Adults with autism, intellectual disabilities (formerly known as mental retardation), Down syndrome and other special needs are living longer and living at home with their elderly parents. The aging of adult children with special needs presents unique challenges and demands. One area to address is grief and loss.

In the bereavement center, we serve a growing number of individuals with special needs who’ve been uprooted from their environment after the death of their last living parent. In addition to grieving the death, they are experiencing many significant secondary losses. These include having to move from their home, their city, their job and their friends.  All that was familiar and part of their routine has suddenly been pulled from them.  This is not only tragic, but overwhelming to the grieving person with special needs. I knew who to call when I lived in Pittsburgh.  I don’t know who to call here.

One significant challenge is the unwillingness of elderly parents to place their aging special needs child in a group home. They keep their child home out of love, but sometimes the best intentions are not always in the best interest for long term care. The elderly parent may have their own health challenges and have difficulty being a caregiver for an aging child with special needs. In addition, every elderly parent will die. It’s hard to think about this, but if the plan is to eventually move the adult child to a group, assisted living, or nursing home, it may be helpful to consider doing this before the parent dies. It can help ease the transition to a new living environment which makes for one less loss after the death.

Thinking long term about special needs adults takes the concepts of advance care planning to a whole new level. Your town may have a Geriatric Case Manager or some such healthcare professional that can help you navigate the needs of this aging population.

Learn about:

  • Available entitlements and benefits
  • Community services for those with lifelong changes
  • Legal tools and attorneys who can create a long term plan for oversight of the whole family
  • Respite opportunities
  • Housing and group home living arrangements

Yes, these are difficult things to think about, but careful consideration and planning will be beneficial for everyone.

Start the conversation.

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