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The Big Questions

When parents can no longer help: planning for the future

Most adults with IDD live with family, and many caregivers are aging. A written plan protects the person you love and keeps their benefits safe.

Start with the person

The plan is about the person with IDD, so they should help make it. Ask what they want: where to live, who to see, what they love to do, and who they trust.

Five documents to make

  1. A letter of intent. Not a legal paper. It tells future helpers about the person: routines, health, likes and dislikes, how they communicate, and their hopes. Update it every year.
  2. A will that leaves money to a special needs trust, not straight to the person. A direct gift can end SSI and Medicaid.
  3. A special needs trust. A third-party trust holds family money for the person's extra needs. It does not count for SSI. A lawyer who knows special needs planning should set it up.
  4. Beneficiary forms on life insurance and retirement accounts that name the trust, not the person.
  5. Decision-making papers for the person, and a named backup for any guardian or supporter. See Guardianship and the options to try first.

Money without losing benefits

  • ABLE accounts for money the person controls.
  • A special needs trust for larger amounts and family gifts.
  • Tell grandparents and relatives to give to the trust or the ABLE account, not to the person.
  • Find out about benefits on a parent's record that may start when a parent retires or dies.

Where they will live

Waiver wait lists can be long, so get on them now even if the person lives at home. Visit places together before you need them. Housing options explains supported living, host homes, and group homes.

Build a circle of support

Name at least three people besides parents who know the person well and will stay involved: siblings, cousins, friends, a faith community, or a case manager. Share the letter of intent with them and say where the papers are kept.

Free help

Last reviewed: October 2026. Laws, dollar amounts, and program rules change. Check with the agency named on this page before you make a decision.