Planning a lifetime of continuous care with a Letter of Intent

As a caregiver, you are the most important advocate for your loved one. You’re the actual witness to and often the force behind their experiences, history, wishes and habits. A critical part of being a caregiver is making sure your loved one will continue to thrive, when you’re no longer able to care for them. Taking the steps to complete a Letter of Intent (LOI) can communicate valuable information about their life, as well as your shared vision for their future.

What is it?

An LOI isn’t a legally binding document, like a will, but it can be an important precursor to a special needs plan. Also known as a “Letter of Instruction,” it is a guidebook-like reference for future guardians and caregivers of your loved one. Additionally, it is an important part of your overall life care plan, providing a road map of your and your loved one’s hopes and dreams for their future, a foundation on which to build a long-term plan. Lastly, it can be a companion piece to a special needs trust or an ABLE account, to help ensure assets are used to best supplement your loved one’s quality of life.

A Letter of Intent should regularly be updated to keep the information current, at least every year or as things change in your loved one’s life, for example, new schools, graduation, marriage or change in diagnosis or prognosis. The document is a living one — never complete but as up-to-date as possible.

Creating a Letter of Intent

Before you start, gather the supporting documentation needed to complete the LOI, including legal documents like trusts or Powers of Attorney, financial statements, insurance policies, birth certificates and identification cards. Equally important, bring your loved one into the process to make sure to include their own hopes and dreams about their future.

Remember, the more detailed you are, the better prepared future caregivers will be to provide continuity of care. Using a Letter of Intent template (download PDF) to help complete the LOI may be helpful. Or create your own document to include the following information.

General overview:

Of all the categories of content in the LOI, this is the one that will allow you to personalize and bring your loved one to life. Explain how your loved one’s day-to-day activities and life are, including:

• Personality characteristics when happy, sad, angry, or anxious, as well as effective — and ineffective — soothing techniques.
• Recreation and activities, including favorite events, daily routines and activities, as well as the events that are disliked. Don’t forget to list favorite vacation locations, activities and traditions and corresponding travel limitations.
• Schedules and routines in place for eating, bathing, sleeping and other daily activities, both on weekdays and weekends.

Again, because this part of the LOI is flexible, you also may want to include names and contact information of siblings and family members who are a source of information about your loved one, as well as other general insights that a future caregiver or guardian would find valuable.

Behavior management:

Include any type of behavior management programs that have had a positive impact on your loved one, but don’t forget to document programs that have been unsuccessful, as well.

Nutrition:

Does your loved one prefer hot dogs with ketchup, but hate mustard? Highlight their favorite foods, how those foods should be prepared, those they dislike and any food allergies.

Medical:

Include in this section all medications and medical professionals whom your loved one currently works with, but equally important is including details about how your loved one interacts with them. Are they frightened by the stethoscope or dental drill? Be sure to include solutions that you and the professionals have implemented to mitigate these reactions. Equally important information is providing medical coverage and carrier information.

Family and individual assets and government benefits received:

This is critical information to help understand how best to fund your loved one’s envisioned future. Assets include salary, employer benefits like retirement accounts and group life insurance coverage, as well individual savings and checking accounts. Include banking identification numbers and contact information for financial professionals whom you work with, and don’t forget passwords to access online accounts. Also list all of the government benefits your loved one receives and any important recertification dates.

Education:

Because of the impact that education can have on every aspect of their life, including a clear picture of current and future education plans for your loved one will be key. Provide detail about the current Individual Education Plan (IEP), what school they are attending and what a typical day is like. Include your and your loved one’s desires for their educational future, as well.

Employment:

As current and future plans for education are detailed, a next step may lead to employment. Describe the different types of work your loved one enjoys, place of employment, if they work, and supervisor.

Environment:

Your loved one’s environment encompasses a complex set of social and cultural conditions that influence their day-to-day life and shapes their future. Do you prefer that they live in the same community where they live now? Make sure to explain your loved one’s ideal living arrangements and other related information, including:

• Residential: What is your loved one’s current living arrangements, what accommodations and supports are in place, and what environmental conditions should be avoided?
• Social: It’s important to include social information in the LOI, as there may be the least amount of documentation to reconstruct it without you. What types of social activities does your loved one enjoy? Do they need help managing spending money?
• Religious: For many families, your loved one’s religious life is a critical element of overall well-being. To ensure continuity, specify their religious affiliation as well as contact information for any places of worship.

Legal and estate planning in place:

Depending on your loved one’s life stage, the legal components of a long-term estate plan may vary from family to family. It’s important to provide detail about what legal and estate planning documents are in place, including trusts, Powers of Attorney, medical directives and wills. Be sure to list contact information for the attorney or law firm that drafted the documents and in what state. Where are these documents stored? Include any passwords needed to access them.

Final arrangements:

It’s never easy to think about the need for final burial arrangements, but having your and your loved one’s wishes carried out at this critical time are paramount. Describe any final arrangements that are in place for your loved one and list contact information. If none have been made describe your preferences and favored final resting place.

Taking the final steps

The initial process of writing an LOI may be an emotional experience and prompt a level of planning and consideration for future events that you may not have had the time and need for, in the past. You may want to enlist an experienced financial or legal professional to guide you through the process. Once complete, however, make sure your hard work is not overlooked. Take these steps to put the LOI into action:

1. Share it with family members, guardians, caregivers or other interested parties.
2. Schedule a family meeting to encourage family members to ask questions and discuss any concerns they may have.
3. Revisit and update the LOI as your loved one ages to keep it current. Set an anniversary date to help you remember — such as Valentine’s Day to show your love — to review annually.
4. Use the LOI as the basis for special needs financial planning to bring your vision of the future to life.

While no one can ever replace you, the LOI is a critical step toward ensuring the well-being and care of your loved one, now and in the future.

Download your own copy of our letter of intent template below, and get started today.

• Interactive fillable version (PDF)