Planning for a child’s long-term care is one of the most emotionally and logistically complex parts of special needs financial planning. Parents often put off asking the hardest questions — but the earlier these conversations happen, the more options exist.

Questions to Ask About Your Child’s Future

  • What level of daily support will my child need as an adult?
  • What setting is most appropriate — family home, shared living, group home, supported independent living?
  • Who will serve as my child’s guardian, advocate, or representative payee when I am no longer able?
  • What happens to my child’s care if their primary caregiver becomes ill or incapacitated?

Questions to Ask About Funding

  • What is the annual cost of the care my child currently receives, and how is it funded (Medicaid waiver, private pay, employer benefits)?
  • How much will it cost for my child to live comfortably and safely if I am no longer here?
  • How much do I need in a third-party SNT to supplement public benefits over my child’s lifetime?
  • Is our life insurance coverage sufficient to fund the SNT at the level required?

Questions to Ask About Providers

  • What providers in our area have experience with my child’s specific diagnosis and support needs?
  • What is the waitlist for state-funded residential services in our area?
  • Who currently has relationships with my child, and how do we preserve those relationships in a transition?

A Letter of Intent is the written document that captures the answers to many of these questions — in your own words, for the people who will care for your child when you cannot. It is not a legal document but it is one of the most important things a parent can write.