What is a Letter of Intent for a Disabled Adult?

Walking Through the Process

Step 1- Structure & Sharing

While creating a letter of intent may not result in extra funding or meaningful therapy time, it may allow the author to rest easier at night knowing they have a plan to answer the question, ‘How will anyone else take care of them like I do?’ 

While preparing for ‘worst case scenarios’ can bring up unwanted worries, having a written plan to ensure that the individual receives as close to the same level of care their primary caregiver(s) provide sets up the individual and temporary caregivers for success.  

Envision that the individual’s primary caregiver(s) is unable to provide care for a period of time, for example 24 hours to 1 week- what would someone who is taking over care duties need to know to provide the best care to the individual?  

Step 2 includes potential topics to include in the letter of intent.  While the list may feel like a daunting task, use the snowball strategy by starting small and adding to the letter over time.  

The level of detail included in the drafted letter of intent is at the author’s discretion.   While the level of detail will be different for each individual, be sure to provide just enough to ensure a smooth transfer of care by a temporary caregiver.  

Next, determine who would be appropriate people to share this document with and/or where this document may live in the home so it can be accessed by anyone who may step in to provide care. 

As the author drafting the letter of intent are often primary caregivers, knowing who would be reading this and taking into account their background and understanding will help to keep the document from becoming too lengthy.  

A letter of intent can be drafted for individuals under 18, young adults, or adult children, those with a developmental disability or intellectual disability as part of special needs planning, or simply as a guide for loved ones who want to begin providing more support.  There is no 'eligiblity requirements' for this support, however this document is typically associated with legal guardianship for a disabled person.  

Letters of intent can be handwritten or digitally drafted, bullet point or narrative style, in a printed and labeled binder or accessible via email or a shared drive.  There is no right or wrong way to draft a letter of intent, just getting one started and sharing with appropriate people/places is a meaningful accomplishment.  Remember, don’t let perfect get in the way of good enough.  

Step 2- Draft

The following is a list of daily, legal, and personal matters that authors may consider including in the letter of intent for the individual.  Choosing only the information that is relevant to the individual and necessary at the time will help keep the letter of intent focused and meaningful for the reader.  

The list below is meant to guide the author to include important and relevant information for the individual. Use the list to help plan what topics to include.   Typically, letters don’t cover everything from the list, and there may be unique matters not listed below that should be included.  

Consider starting the letter with basic personal information and the following statement:

Individual’s name & nicknames:

Date of birth:

Last revision date:

Author:

This letter of intent was developed to assist temporary caregivers in providing meaningful and consistent care to _.  Please use the information in this letter with positive intent. 

Letter of Intent Potential Information to Include:

• Family Structure
  • Family member names and relationships (immediate and extended)
•  Legal documents
  • Special Needs Attorney contact information
  • Guardianship
  • Power of attorney
  • Supported decision-making agreements
  • Special needs trust
  • Other policies the individual is a beneficiary
• Health and Medical Care
  
  
  • Individual’s disability/diagnosis
  • Medical history
  • Insurance cards
  • Contact information for primary doctors & offices

  • Contact information for field-specific doctors (i.e. neurology, allergy, etc.) 

  • Medication- dosage and when, and pharmacy that fills the prescriptions

  • Body care and needs

  • Equipment and how/when to use + contact information for repairs

  • Allergies

  • Home care schedule
• Family/& individual’s long-term goals, dreams, desires, and plans
  • Final arrangements and preferences
• Communication
  • Communication phrases or meanings
  • Nonverbal communication meanings
  • Visuals, where to find, and meaning
  • Assistive technology system
• Sensory needs
  • Preferences/Needs, where they are kept and for how long
  • Triggers
  • Tell tale signs individual needs a sensory break
• Self Care/Personal Hygiene
  • Showering, dressing, brushing teeth, toileting, handwashing, hair, nails, washing face, etc.
  • Menstrual care
• Socialization & relationships
  • Names of people in their social circle and relationships
  • Family’s names, relationships they may mention or request to see/talk to
  • Background of friendships or romantic relationships
  • Preferred social activities and times/dates/locations of routine social engagements
• Daily Needs
  • School, therapy, clubs, sports, volunteer, work, respite providers, day programs
  • Where, when, equipment/supplies, transportation, uniform, etc.
  • Contact information and/or relationships of coaches/managers/leaders
• Morning/Evening/Weekday/Weeknight Daily Routines
  • Sleep habits, arrangements, schedule, and preferences
• Family Routines
  • Holiday, weekend, birthdays, etc.
• Transportation
  • Driving needs and preferences, insurance
  • Requesting transportation, fares/fare card, local stops and time schedules
  • Addresses of high frequency places
• Behavior
  • Triggers
  • Behavior plans
  • Strategies for coping or transitions
  • Rewards- when and how to use, where they are kept
  • Expectations for behavior in the home and community
• Preferences
  • Food
  • Where they shop, what they prefer to eat and when or where, allergies, preparation of common favorite foods, preferred restaurant and orders, typical snacks
  • Recreation
• Technology
  • Uses, passwords, locks, cords, programs, etc.
  • Social media accounts, appropriate usage, etc.
• Financial Support
  • Wallet, cash/debit card, typical budgets
  • Skills and typical spends
• Home Chores
  • Laundry, cleaning, tidying,  mail, garbage, etc.
• Financial Information & Government Benefits
  • Bank accounts
  • Supplemental Security Income (SSI) payments and amounts/SSDI benefit statement
  • ABLE Account
  • Other financial resources
• Religious or spiritual routines, practices, and/or expectations
• Location of special keys, special hiding spots, passcodes, etc.

Regardless of the information provided, a helpful detail may be to note how independent the individual is with particular tasks.  

For example, if the letter outlines the bedtime routine, specify if the individual is completely independent, benefits from reminders, needs periodic check-ins, or mostly dependent on a caregiver.  

Step 3- Sign, Share, and Schedule Routine Updates

Once the letter is drafted, it is important to sign it (in ink or digitally, if possible) and date.  

If the letter of intent is being held in the family home, then be sure to label it and inform appropriate parties where it can be found.  

If the letter of intent is being distributed to a supportive trusted person, then be sure to print copies and review the purpose and contents of the letter with appropriate parties.  Be clear about how and when people will be notified to review or use the letter of intent and whether they have permission to share or disseminate it to others.  

Once signed, dated, and housed, determine an appropriate schedule for updating.   Between 1-2 times a year is typical.  Aligning the updates with significant events, such as the individual’s birthday or other yearly events will help to trigger the thought to update.  

Whether simply updating or adding to, semi-frequent revisions is an ongoing process and will ensure the letter of intent doesn’t become irrelevant or unhelpful as this would negate the purpose of the letter.