Letter of Intent Offers Peace of Mind: Information of Interest to People with Disabilities and Other Special Needs and Their Families


A Letter of Intent (LOI) is a document containing caregiving instructions to future guardians, trustees and advocates. It's a necessary supplement to a Will or Trust in that it attempts to ensure that a family's wishes will be fully understood and carried out. Although not legally binding, an LOI offers guidance to the courts and trustees. It typically includes a summary of family and financial information, as well as the child's medical and social history—like the list of instructions you leave for a babysitter when going out for an evening. While length will vary, more detail is better than less, particularly if the child is non-communicative.

The LOI should state specifically that the instructions it contains are not binding, so as not to interfere with the Special Needs Trust and so that the use of the trust fund isn't conditional upon following the text of the LOI. Parents or caregivers should work with an attorney who has experience in creating these specialized Trusts to help them draft the LOI.

Seeking comfort

The instructions might include, if necessary, suggested remedies for calming down the child during an emotionally upsetting episode. For example, since many children with special needs adore animals, one instruction in an LOI could mention that a visit to the zoo might trigger excitability in the child and warn that, as a consequence, there's a risk of the child disappearing into the crowd. In this case, the LOI could suggest that the child use a neck tag or wristband(like a medical-alert bracelet) informing strangers that the lost child has special needs in the event that he or she acts belligerently, and including a phone number for people to call in that event. These instructions will be particularly useful to help explain the behavior of a fully-grown child with Asperger Syndrome who is unable to recognize social cues and may say inappropriate things.

Remember that a caregiver reading the LOI at some point in the future might not understand the medical terminology that describes the child's condition. Use plain language where possible, for example in parentheses after a difficult term.

Document revision

Families should conduct a review of these documents at every significant transition in life, including academic progression from elementary school to middle school and high school, and eventually the move into adulthood. An LOI will also need to be amended if the child develops an allergic reaction to a specific medication or if one form of therapy for the child is replaced with another, though such revisions generally aren't expected to require substantial time or effort.

It's critical to carefully craft future documents in such a way to preserve government assistance such as Medicaid or Med-waiver, a funding source offering comprehensive services that include various therapies, respite care and housing benefits. Special Needs trusts must be carefully drafted to avoid disqualifying the individual from essential government benefits. A useful—and free—LOI template on CD-ROM is available from MassMutual to help walk families through the process.1

Emotional acceptance

A Letter of Intent should reflect a family's core values, what they care about and how they'd like their loved one to be cared for in their absence. Understanding what makes children with special needs comfortable or uncomfortable in certain situations, and learning to anticipate their reactions, can take years of trial-and-error experiences before parents are able to sit down and adequately convey their wishes in an LOI. The same thinking applies to developing appropriate coping mechanisms as a family to deal with medical emergencies, behavioral challenges, sleeping disorders and other matters that future caregivers will need to know.

Remember to include your child as much as possible in the creation of your LOI. Ask him or her what things matter the most: attending worship services at a particular church, visiting with a favorite aunt, wearing a certain outfit to a sporting event? Getting an education, working outside the home, being around family and friends? High-functioning children and adults, including those with physical disabilities and no cognitive impairment, are perfectly able to articulate their likes and dislikes and should have a stake in planning their own lives.

1 http://www.massmutual.com/specialcare

The information provided is not written or intended as specific tax or legal advice and may not be relied on for the purposes of avoiding any Federal tax penalties. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel.

(1)The Special Care Planner receives advanced training and information in estate and tax planning concepts, special needs trusts, government programs, and the emotional dynamics of working with people with disabilities and other special needs and their families. The certificate program was offered by The American College in Bryn Mawr, PA, exclusively for MassMutual financial professionals.

AND if using ChSNC

(1)The Chartered Special Needs Consultant (ChSNC®) - a professional designation awarded to those individuals who've completed 120 hours of academic classes in addition to holding either Chartered Life Underwriter (CLU), Chartered Financial Consultant (ChFC) or Certified Financial Planner (CFP) designations and previously completing the Special Care Planner certification program. The ChSNC designation was developed by The American College in Bryn Mawr, Pennsylvania. The certification program and the professional designation evolved from MassMutual's SpecialCare(SM) Program.

If using the Brand Ambassador option, you also need to include the following (2)“Local sales agencies are not subsidiaries of MassMutual or its affiliated companies.”

© 2013 Massachusetts Mutual Life Insurance Company 01111-0001