Special Needs Trust: Writing Your Letter of Intent

Parents of kids with special needs should take additional care when planning for their future to make sure that their kids will receive appropriate support and care once they’re no longer around to care for them. The letter of intent is among the most vital estate planning documents parents can prepare.

The primary goal of this letter is to preserve your knowledge of your kid’s special supports and accommodations to help guide future guardians, caregivers, and trustees in giving your child the best possible care when you’re gone.

What to Include in Your Letter of Intent

Writing this letter for a special needs trust can be intensely emotional since you’ll have to imagine a time when your child will be without you. To make the entire process easier for you, at the very least, your letter must include these crucial details:

  • Your child’s daily routine.
  • Your child’s preferred communication methods.
  • Words to avoid.
  • Tips for emotional regulation and managing destructive behaviors.
  • All the names and contact details of your child’s teachers, aides, doctors, therapists, service providers, etc.
  • Medical information and a list of all medications and prescriptions.
  • Health insurance coverage.

A more thorough letter should include your child’s preferences, history, daily life, and your wishes for your child, as well as the following information:

  • All the contact details of family members, close relatives, and friends.
  • Your child’s complete medical history, including all the immediate family members’ medical histories.
  • A description of your child’s current living situation and your preferred alternatives, in case it changes when you’re no longer around or the primary caregiver.
  • Public benefits your child is receiving, including Medicare, Medicaid, SSDI, or SSI. Make sure to include all social security numbers and helpful tips for handling government red tape.
  • Relevant financial and legal documents, including advance directives.
  • The local agencies providing services for your child.
  • Educational and/or employment history.
  • Personality traits, likes, and dislikes – be as detailed as possible.
  • Preferred social activities, clothing preferences, food preferences, and allergies.
  • Guidelines for personal care and grooming.
  • All the lessons learned while raising your child.
  • Tips on discussing a parent’s incapacity or death.
  • Your wishes for the future.

Once you have composed your letter of intent, keep copies of it alongside your other important trust documents and share them with relevant family members. Make sure to review your letter at least yearly.

As your letter takes shape, you’ll realize you have more information to share or find that some of the earlier information you provided is not relevant or necessary for your child’s care anymore. Update your letter of intent as needed and include new information about your child’s preferences and personality development.

You Must Act Now

The main driver for parents of kids with special needs is fear of the unknown, specifically – how will their children be taken care of when they are gone. And this is a very legitimate concern since, absent a health condition, most disabled children will outlive their parents. Speak to family members about your wishes and plans, then take appropriate action with guidance from an experienced estate planning lawyer and financial advisor.

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