A Memorandum (or Letter) of Intent communicates and documents your preferences regarding the care of a disabled family member or friend who is the beneficiary of the special needs trust you created. It provides guidelines for those who will become responsible for your disabled family member after you pass away or become so disabled yourself that you are unable to provide the necessary care to your loved one. Letters of Intent are most often prepared by parents of disabled adult children for either the trustees of special needs trusts or plenary guardians of the children.
The Memorandum of Intent is a personal letter drafted by you that is intended to give your trustees insight and information regarding services, supports and other personal matters affecting a disabled family member. The letter does not convey legally binding directions like those in a trust. Rather, it is a personal letter to assist those people who will have responsibility for a disabled family member when making important decisions.
A Letter of Intent should include:
1. Your disabled family member’s full name, date of birth, place of birth, name of the trust, date of trust, and Social Security Number.
2. The agencies that relatives, trustees, and guardians should contact for advice and assistance (e.g., local chapter of the ARC, the Law Office of Donald D. Vanarelli, case manager, care providers, physicians, therapists, close family members and friends, etc.).
3. Financial and Other Support for the Disabled Family Member
- List all government benefits that the disabled family member receives or may be eligible to receive.
- List any arrangements with trustees, care managers or other entities for the disabled family member’s continued care.
- If appropriate, list the disabled family member’s current employment or the type of employment you think he or she would like.
4. Current Living Arrangements
- Describe the type of living situation you anticipate for the disabled family member (e.g., live with a particular relative or in a small group home or in an apartment with supports)
- Identify the location of the living situation you anticipate for the disabled family member (e.g., the geographic locale you prefer and type of physical and natural environment, if that is important).
- Set forth the qualities of the living arrangement you want for your disabled family member (e.g., non-smoking home, adhere to a certain religion, one which only allows certain types of disabilities).
- Identify regular routines in the person’s schedule (e.g., daily schedule of getting ready for school, weekly appointments).
5. Programs and Services
- Name the type of school or day program setting expected.
- List the name and address of day programs, sports programs, habilitation programs or other programs and activities in which your disabled family member regularly participates.
- List the type of services, therapies, or medical interventions that are needed, or may be needed (e.g., job training, speech therapy, behavioral evaluations).
- Describe your disabled family member’s routine medical care (e.g., regular check-up schedule, annual eye examination) and the names and locations of preferred medical professionals.
- Identify any health insurance that should be maintained, including addresses, phone numbers and insurance number.
6. Personal Preferences
- Describe the disabled family member’s grooming preferences (e.g., type and color of clothes, hair style, preferred toilet articles).
- Describe likes and dislikes about food, chores, and other routine daily activities.
- List favorite personal items (e.g., personal radio, certain furniture, personal pet).
- Describe personal habits that it would be important for someone else to know about.
- List all friends and relatives, their addresses, and how often the disabled family member likes to visit the friends and relatives.
- List the disabled family member’s favorite recreation and other leisure activities and the level of independence in these activities. Include how often the disabled person likes to participate in these activities.
- Describe any religious preferences and how often the disabled person participates in religious activities.
- Describe the disabled person’s level of independence for getting around the community (e.g., ability to ride public transportation, independence in shopping, ability to go out alone).
- Describe the disabled person’s ability to handle money (e.g., change-making, independence in purchasing items).
- Describe the disabled person’s abilities in reading, writing, communicating, and understanding what others say. If the disabled person does not use verbal communications, note how he/she communicates desires or replies to others.
- Describe any aspects of the disabled person’s disability that you feel are particularly important to be aware of (e.g., needs a structured environment, must be kept from food, does not like loud noises).
Completing the Letter
Some clients find it easier to write the letter if they keep a daily journal for several weeks, which records the daily, weekly and monthly activities of both the disabled person and those people who provide support and care. The journal can then be condensed into a letter
(Adapted from a brochure published by the Academy of Special Needs Planners (ASNP). Mr. Vanarelli is a founding member of the ASNP)
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