Letter of Intent & Life-Long Special Needs Planning

by Mary Mazzoni on May 4, 2013

When a son or daughter needs life-long support, parents ask -”what will happen when I’m gone?”.

It’s a difficult question, sometimes unspoken, but always present.

When we address the question head-on, we move beyond fear to positive action.

In addition to a last will and testament, you will need to work with a qualified attorney and financial advisor to establish and fund a special needs trust.

But how can you communicate the many details of your child’s unique needs and preferences that, together, contribute to his or her quality of life?

A Letter of Intent can guide those who will support your son or daughter when you can no longer do so yourself.

What is a Letter of Intent?

The Letter of Intent serves as the foundation of a comprehensive life plan. It is not a legal document, but it provides invaluable guidance to those who will support your son or daughter.

Your child should be involved in developing the Letter of Intent. It should reflect his or her unique preferences as well as needs in every aspect of life, including:

  • Financial and legal
  • Medical and health/wellness
  • Relationships
  • Housing
  • Personal care
  • Work
  • Recreation and leisure
  • Spirituality
  • Routines and special considerations
  • Hopes and dreams for the future

Wow! Sounds like a monumental task, doesn’t it?

The key is to develop the Letter of Intent over time. It can’t be accomplished in one sitting. And because your child’s needs change, it will need to be re-visited and revised periodically.

Sample formats

Rather than starting with a blank page, you may appreciate seeing a couple of sample formats.

Don’t feel constrained by these examples. This is your family’s document. Add or delete items and structure the Letter of Intent as you see fit.

Sample from Special Needs Alliance

Sample from the Arc of East Middlesex

Self determination

This is your child’s life we’re talking about. How can he or she have a real voice in this important document?

The answer will be unique to each individual, but here are two tools that may help.

Listen to Me

My Plan

Your son or daughter may be able to articulate answers to the questions in these person-centered planning documents. Or – if communication skills are limited – you, along with others who know and love your child, may use the questions as a structure to observe and record your child’s preferences.

A person-centered planning tool such as the two shown here can be added to the Letter of Intent.

Living documents

A Letter of Intent and Person-Centered Plan are meant to be living, breathing documents. They help everyone who supports your child to “be on the same page” now, as well as in the future when you are not personally coordinating your child’s supports.

Develop over time, with support

Dedicate increments of time each month to drafting sections of the Letter of Intent and Person-Centered Plan. Involve your child and those who know and love you and your child.

Review and update

Choose a particular time at least annually to review and update the documents. Perhaps your child’s birthday month or the first month of the year.

Share and use

Be sure that family members and other key people in your child’s life have a current copy of the Letter of Intent and Person-Centered Plan. Refer to them regularly as you make plans and decisions with your child. File a current copy with other important documents such as your will and financial records.

Help your child self-advocate with teachers, agencies, family, and others using the Person-Centered Plan.

How do you eat an elephant?

You know the answer – one bite at a time!

The most important bite is the first one. What is the first step you’ll take after reading this post? Will you:

  • talk with someone you love and trust about it?
  • set a time to print and review the sample formats?
  • mark a date on each month’s calendar to dedicate an increment of time to begin drafting a Letter of Intent?

One small bite at a time!

Your turn

If you and your family have already drafted a Letter of Intent or Person-Centered Plan – please share your insights!

Questions or concerns? Please comment below or send an email.

If you found this post helpful – please share it. Thanks!

May you and your child relish each moment of the journey – even as you plan for the future!

Graphic Credits – Tim Morgan at Flickr and willconley777 at Fickr

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