The special needs letter of intent

Those of us who are parents of atypical young people may be so involved with their day-to-day or near-future needs that we don’t give much thought to the long term. Either we don’t have time, or when we do have time we’d rather think about something else. The consequences our own mortality are usually far down the list of Things We Like to Think About.

But you know, at some point, we’d better consider the future.

Maybe we don’t expect to die for another few decades at least. On the other hand, all it takes is a car crash, and suddenly our atypical young adult doesn’t have a parent to intercede between him or her and “The World.”

How would your kiddo manage? Would a relative or close friend be able to step in and fill most of the role you play? Would you leave enough money for your child to get along?

As you probably know, this gets into the realm of estate planning, which involves attorneys and financial planners. When you’re ready to get going on wills and trusts and inheritances, it’s best to find professionals who specialize in helping families like yours. (Trusts and so forth will be the subject of future blog posts.)

Well, what if you’re not ready to hire an attorney? Is there something else you can do to help your child in case you kick the bucket sooner rather than later? Yes indeed – you can write what’s called a Letter of Intent.

In general terms, a letter of intent is a document that can cover a lot of situations, like accepting a business offer. What on earth does that have to do with our families, you might ask??

Ah, but if you Google “special needs letter of intent,” you’ll find what we are talking about. A special needs letter of intent is kind of like an instruction manual about your son or daughter, to be read by the adult who’s going to be involved in your child’s life after your demise.

It isn’t a formal legal document. You can write one and update it at any time without an attorney’s assistance.

Several special needs attorneys and financial planners maintain websites that include discussions of letters of intent. For example, here’s a link to one attorney’s website, and here’s one to the website of a financial planner. Many of these websites include sample letters of intent, or suggestions on what to include, or a form that you can download and fill out.

In addition, some nonprofit special needs websites also talk about letters of intent. “Life After IEPs” is a website where the focus is on post high school children. Their discussion on letters of intent includes a link to a worksheet for gathering information from your son or daughter, allowing him or her to have some say about what’s in the letter.

All of the links above discuss what you should you put in the letter of intent. For the most part they mention the same types of information, while suggesting different ways to organize the content.

Here’s a partial list of commonly recommended content:

  • Name – full name, nickname, previous names
  • Numbers – Social Security, address, phone numbers, clothing size, shoe size
  • Siblings – names, addresses, phone numbers
  • Relationships – marriages, offspring, special friends, close relatives. Contact info and important dates.
  • Guardians/trustee/representative payee/ power of attorney – names and contact info. Or, will any of these be needed in the future?
  • Final arrangements for your child – what has been arranged and paid for; what are your preferences
  • Diagnoses
  • Vision/hearing/speech/mobility issues
  • Blood type
  • Immunizations
  • Health insurance info
  • Current and previous physicians, therapists, etc – contact info, frequency of appointments, reasons for visits
  • Dentist
  • Allergies
  • Prescriptions and over-the-counter medications
  • Dietary needs and habits
  • Current living situation, and preferences for future housing
  • Daily living skills – level of independence
  • Emotional state – include how to handle/avoid/minimize negative reactions
  • Likes and dislikes
  • Sleep habits
  • Personal finance
  • Schooling – past, present, and future
  • Employment – past, present, and future
  • Leisure and recreation
  • Religion
  • Your feelings and vision about your child’s future

Some of the topics suggested may be very important for your child, while other types of information might not pertain to your child at all. You can add other topics not included in the suggested content. In other words, you can customize the letter of intent so it contains all the useful information relevant to your child’s situation, in as much or as little detail as needed. Make sure to cover the things your son or daughter can’t be counted on to tell your successor.

It’s important to note that a good letter of intent doesn’t cover only the facts. It shares the equally useful insights for getting along day by day, such as: what sets your son off, what calms your daughter when she’s angry, what makes him laugh, what are her favorite shows, how best to introduce a change in routine, which foods will be rejected – whatever you think would be important to know.

(The letter should not include details about your income and assets. That information can be documented elsewhere.)

So, this is not a letter you are going to bang out in an hour! It’ll take many sessions to do a proper job.

To save time, you could cheat a little – I won’t tell on you. For instance, instead of listing out all the medical history, you could say “A file folder containing all of Taylor’s medical records is located towards the back of the top drawer in our filing cabinet.” Just make sure your successor will know how to access the information he or she needs.

Most of the websites indicate that you review the letter of intent annually and revise it as needed. They also suggest sharing the latest version with the person(s) who are most likely to be involved with your child, or at least telling your successor where to find the letter among your important papers.

I am in the midst of preparing a letter of intent for our son Nathan. I’ve spent 5-6 hours on it so far, and am maybe two-thirds done. It isn’t the most fun I’ve ever had, that’s for sure! But I chip away at it a section at a time, reminding myself how useful this document would be when we’re no longer around.






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About janet565

I've lived in the Inland Empire of Southern California since 1982. My profession involves maps and geography. I hope you find the blog useful, and wish you well....

3 responses to “The special needs letter of intent”

  1. Douglas Baker - Special Needs Advisor says :

    Wonderful information Janet ! Great post…


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