top of page

3 Legal Documents You Should Have in Place Now

Updated: Aug 22, 2023

Including a free Letter of Intent template

Give yourself and your family the peace of mind that your loved one is being properly taken care of.

It is essential to have these three documents in place to protect your loved one with Down syndrome. This can't wait until they are 18 or later. Below we describe each, its importance, some key considerations, and where to get started on your Will, Special Needs Trust, and Letter of Intent.

Last Will & Testament

WHY: Every family should have a Will, but let's face it, they require some morbid conversations, cost a bit of time and money, and so are often shelved until midlife or old age. Yet, without a Will, your assets will float around in legal no man's land if (when) one of you passes. Your minor (<18) kids could become wards of the state including your loved one with Down syndrome whose benefits could also be jeopardized through the resolution of your estate.

WHEN: You should certainly have a Will in place once you get married. If that is overlooked, by all means, get a Will in place before you have kids.

WHO: Nowadays, you can create a Will online with little investment. However, be sure it addresses all your needs, especially if your situation is complicated; i.e., you own your own business, you have a non-traditional family structure, or you have a child with special needs. In that case, find an attorney who is familiar with estate planning and trusts for families with special needs. You want to make sure these documents are done right.

WHAT: Much of a Will is boilerplate. Generally, if one parent dies the other gets the full estate but if that is not your preference, or if/when both parents pass, who will get the estate? Often this is split equally amongst your kids.

  • Living Expenses: However, what we realized is that we need to ensure the living expenses for our daughter with Down syndrome need to be covered by ourselves/our estate (less any projected benefits like SSI/RSDI etc). So depending on our age and that of our daughter, splitting equally amongst our 3 kids may leave her without financial support after we are gone and that is not acceptable. We just addressed this in our updated Will.

  • Guardianship: You should designate a guardian for all your minor kids and your child/adult with Down syndrome. Guardianship is a controversial issue which we will delve into in our August 2nd blog. Some parents want to let their adult with Down syndrome maintain control and trust they will be involved as necessary. However, without legal guardianship, your loved one becomes responsible for financial, medical, housing decisions and more and doesn't have to consult the parents. If others (schools, hospitals, housing) aren't comfortable your loved one can make reasonable decisions, they can't legally bring you in so they bring the state in to assist. This is not a path we want to go down. So we have secured guardianship for ourselves and have ensured future guardians are provided for in our Will. Just keep in mind, guardianship does not preclude your loved one with Down syndrome from being involved in every decision that affects their lives - it just protects them and ensures critical decisions are made with the people that know and care for them most. So be sure you designate a future guardian and provide the ability for successive guardians in the case that they can't or won't be able to be guardians for the duration of your loved one's life.

Special Needs Trust

WHY: Typically, your Will would direct your inheritance to your kids and/or other heirs as you wish. However, if you apply this standard method for your loved one with Down syndrome, you will most assuredly jeopardize their future benefits. As we covered in our Financial Benefits post, to maintain Social Security benefits (SSI/RSDI and Medicaid/Medicare), your self-advocate cannot exceed asset and earnings limits. If your Will directs assets, whether money or other items of value) to your loved one, that can count against your self-advocate's assets limits (generally $2,000). Hence, an inheritance can cost your loved one hundreds of thousands of dollars during their remaining lifetime. To avoid such calamity, you need a Special Needs Trust in place.

WHEN: A Special Needs Trust (SNT) should be in place at a very early age for your loved one to ensure they are protected against unforeseen circumstances. This doesn't just apply in the case of the parent's passing but can apply to any other source of inheritance for your loved one. If their grandparents or favorite aunt wants to direct some money or valuables to your loved one, they too will (often unknowingly) violate Social Security rules. So ensure you have an SNT in place and all your relatives are aware to direct any potential inheritance not directly to your loved one, but to their SNT.

WHO: Definitely utilize an attorney well-versed in special needs documents. It will be well worth the investment. Generally, you should only have to do this once; i.e., no future updates of the SNT should be necessary. Often the SNT stands idle until someone Wills or gifts assets to your loved one's SNT. As part of your Will, you will want to designate a Trustee of the SNT who can allocate funds from the SNT to your loved one and their liabilities (housing, day program, living expenses, transportation, etc).

WHAT: The Special Needs Trust has few limitations so be sure you/your trustee are aware of how to allocate funds and for what. You don't want SNT funds to go to your loved one's checking account to pay bills as this could violate their asset limits and be overly cumbersome. There are other types of trusts that may apply which you should discuss with your attorney and/or financial planner. For instance, if parents get divorced and one must pay child support to your loved one with Down syndrome, you need to ensure proper documentation that will not jeopardize financial benefits.

Letter of Intent

WHY: A Letter of Intent (LOI) is not actually a legal document but in many ways is the most important. It should be provided to people who may care for your loved one with Down syndrome in the future - guardians, SNT trustees, and relatives in general. It shares important information about accounts, benefits, legal documents, and medical conditions of your loved one but perhaps more importantly also shares your self-advocate's likes, dislikes, hobbies, dreams, fears, habits, skills, and style. This information will help make any transition more seamless and ensure those who may care for your loved one understand your wishes and your loved one's nuances.

WHEN: This is not a legal document but has become essential. You can create this anytime and update it periodically. Having an LOI in place as they get older (teens) and as the parents get older, becomes more critical.

WHO: Since it's not a legal document, you can just create this yourself. Much belatedly, we have just created our first LOI for our daughter, Gwendolyn, who is now 28. You can get a free template when you subscribe to our website which includes great blogs, checkup quizzes, lots of helpful resources, and no spam! Parents would be the natural creators of the LOI, but your self-advocate and other family and independence team members can certainly add to the document.

WHAT: Use the Word template provided when you subscribe. Write as much as you want for each section. Add additional points that may be specific to your family or skip those that don't apply. We carved out an hour on Saturdays for a month to create Gwendolyn's initial LOI. We plan to review and update every couple of years. Be sure to distribute (via email is fine) each update to the appropriate people. This will provide you (and future guardians and trustees) with tremendous peace of mind.

While some aspects of your family's Independence Plan can wait (ie, work or housing), attending to these documents in the first months or years of your loved one's life is essential.

You can learn more about these legal documents, guardianship, financial benefits, and more in the award-winning The Essential Guide for Families with Down Syndrome: Plans and Actions for Independence at Every Stage of Life. Learn more here.

Also, check out our YouTube Series on independence, including our episode on Legal Protection here.


I'm thrilled to announce The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!

The Essential Guide provides step-by-step support to:

  • Inspire mindset shifts toward one of independence and possibilities

  • Foster independence building blocks from the earliest age

  • Highlight health risks and financial resources every family must know

  • Detail education and work options to promote community inclusion

  • Evaluate family- and community-based home options including the search process

The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.

“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas

Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.


Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!


Get the latest on The Essential Guide, speaking engagements, and our weekly blog articles and resources when you subscribe to our free website.

Sometimes this blog may get hidden amongst your Facebook posts or buried inside a Facebook Group. Don't miss any blogs filled with steps to help us all advocate for our adults with Down syndrome. Subscribe today!*

Get your


Letter of Intent Template

when you subscribe.

This Word template includes essential sections and prompts to complete your own Letter of Intent. In addition to a Will and Special Needs Trust, the LOI shares the wishes, dreams, hobbies, skills, fears, and favorites of your self-advocate to ensure a seamless transition for future guardians and caregivers.

Get your free template today and give yourself the peace of mind you deserve.

*I appreciate and value your trust. I never share emails or send spam."

Recent Posts

See All


bottom of page