It’s possible the most important document you will ever draft is not a legal document, but rather a living document which should be updated annually. This document is not static, and this cannot be emphasized enough. It is the ever-evolving life story of your loved one with special needs.  

The most difficult question(s) many parents with children, especially those with special needs, face is:

• How will your child be looked after when you are no longer around?  
• Who knows your child like you do?
• How do you go about securing a trust for your child for financial support in the future? Will you need a Special Needs Trust , a Support Trust, or a Preservation Trust?
• The best way for your child to still feel your presence, in your absence, is for you to select a trustee miraculously has his or her favorite birthday cake delivered on the special day, year after year.

“[I do not know] why this did not occur to me earlier. Perhaps the future should look more like the best parts of your present.”

        -Cammie McGovern, author and mother of Ethan Floquet in the documentary film Ethan at 21

The Solution?

A detailed Letter of Intent. Try to make the letter all-inclusive in terms of information about your family and child. Provide your attorney and trustee/successor trustee with a copy, and regularly update this document to fit changes in your child’s life or tastes.

A Letter of Intent typically includes the following:

1. Immediate family history: Names of parents, grandparents, siblings, and anyone else of importance who fits into the family unit. Include family-like members as well.

2. Beneficiary’s history: What is the disability? Is it from birth or other circumstance? If so, at what age?

3. Medical information/medications: The names of doctors consulted and important medication information such as whether generics can or cannot be used. Allergies to certain medications, and anything of importance that could prevent trial and error episodes.

4. Benefits being received: SSI, SSDI, Medicaid and/or Medicare

5. Diet: Special plan or allergies to certain foods

6. Residential setting: Own home, condo, group home, or facility? Is there a goal in mind?

7. Daily routine: Morning, afternoon, and evening routines. What structured routine works best?

8. Education: High school, junior college, university, or aspirations?

9. Employment: Currently employed or possible employment in the future?

10. Social life: Favorite family members, friends, and places to go

11. Hobbies: Painting, doing crossword puzzles, listening to music, going to the movies, etc.

12. Behavior(s) and behavior management: Long periods of silence or tantrums. What has been successful in calming the beneficiary?

13. Fears: Insects, a completely dark room, clowns, thunder/lightning, etc.

14. Religion

15. End-of-life plan: Family plot, funeral or memorial service, religious service, etc.

16. Other information: This section should include things that only a family member could know, such as favorite birthday cake, favorite foods, disliked foods, favorite colors, favorite place to visit, favorite games, etc.

The list is endless for nuggets of information about your child. What unique gifts and talents does he or she have and how can they continue to be fostered? Does your child also have a vision for his or her life? If so, what is it?

In creating a Letter of Intent, you will make your child’s life so much easier and give yourself peace of mind as well.

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