Date: August 1, 2011

We have been pleased in recent years to see an increasing number of individuals with disabilities and their families take a more active role in planning for the point in time when the parent or caregiver becomes disabled or passes away. “Future Planning,” or as we call it in our office, “Special Needs Estate Planning,” can be especially difficult for parents and caregivers, as it forces them to contemplate the often inconceivable notion that a son or daughter with a disability will have to continue on without the support and advocacy provided by his or her parents.

The Special Needs Estate Planning process is designed to help families take a proactive role in determining how a family member with a disability will live his or her life once the parent or caregiver is gone. Part of that process involves selecting “fiduciaries,” usually Guardians or Trustees, to manage funds and make medical and other personal decisions for the individual with the disability.

Yet while more families are recognizing the need for this disability-focused estate planning, we still find that many fail to complete one critical part of the process: they fail to document how they would like the successor Guardians and Trustees to make choices and exercise authority once the parents and caregivers are gone. In other words, a well designed Special Needs Estate Plan will ensure that upon death or disability, the transfer of assets and transition of decision making authority will happen in the most efficient way possible. However, after the administration or transfer of authority is complete, the successor Guardians and Trustee are often left asking, “Now what?” “How do I make decisions about how to spend money safely preserved in the Supplemental Needs Trust?” “How do I exercise my authority as personal needs Guardian so as to make the life of the individual with the disability as secure and fulfilling as possible ?”

In some cases, a Guardian or Trustee will have an existing, close relationship with the individual with the disability. In others, and we would venture to say in the majority of cases, that close relationship does not exist. Guardians and Trustees often live in other cities, have families of their own, and have never been able to dedicate the time and attention that is required for an intimate knowledge of the individual’s needs. When the individual with the disability has a cognitive limitation which prevents him from expressing his preferences in any comprehensive and credible way, it is really the responsibility of the parents and caregivers to provide this information to the successor Guardians and Trustees.

The most common tool for accomplishing this is the “Life Care Plan,” often referred to as the “Letter of Intent.” Many readers of this newsletter have attended our community education programs where we discuss Supplemental Needs Trusts, Future Planning, and the Life Care Plan. They know that there is no single, specific form for this document. The key is that the information is written down in a clear, concise and regularly updated fashion.

In preparing this newsletter, we came across an excellent article written by Reginald “Reg” Turnbull,  Esq., an attorney in St. Louis who is active in the Special Needs community and who is an original member of the Special Needs Alliance (www.specialneedsalliance.com). The following article has been adapted from an article that Reg wrote and which was published in Exceptional Parent magazine, a monthly publication that focuses on the needs of individuals with disabilities and their families. With his generous permission, we reproduce an excerpt of his article on the nuts and bolts of preparing a Life Care Plan and Letter of Intent for our readers.

One note on Reg’s article is warranted. He is writing primarily for the mental retardation/developmental disability community. Many of his suggestions assume that the disabled individual lacks cognitive capacity and/or has significant physical limitations. We know that disability comes in many shapes and sizes, so keep the broad picture in mind – the idea is to inform, educate and encourage those who will follow in a caregiver’s footsteps. Enjoy.


By Reginald Turnbull, Esq.

St. Louis, Missouri

Herman, age 79, and his wife, Mildred, age 68, began to worry about their mortality because Herman’s knees were getting bad and had to be replaced. Herman was also starting to get forgetful. Their only child, Joe, now age 42, had lived with them since he was born after being diagnosed with Down’’s Syndrome. Joe had never been away from his parents overnight. Joe went everywhere with his parents — church, store, and vacation trips.

The family never pursued disability services for Joe, although he did receive Social Security benefits as a disabled adult. Mildred was very energetic during the interview and was still working but was planning to retire soon. Herman had retired at age 65 and had been the primary caregiver for Joe when Joe also “retired” from his sheltered workshop employment to be at home with Herman.

During the consultation in my office, the parents were very concerned about how to provide for Joe after their deaths. They were quick to talk about Joe’s abilities and disabilities, and I wanted to capture their enthusiasm and frustration, both of which were apparent when they described Joe and how they provided love and care for him. We discussed a Special Needs Trust, and they were eager to establish one for Joe. I felt it important for the parents, while they were able, to put down on paper what they believed would be important for Joe’s caretakers to know.

Day in and day out over the lifetime of a person with disabilities, parents have learned (often through trial and error) just what should be done to care for a loved one with special needs. Small wonder that parents are concerned about how the “hands on” care will be continued when they die or lose the capacity to continue.

Trust lawyers point out to parents how using a Special Needs Trust can enhance the quality of life for a person with disabilities over what public benefits provide. A well-drafted trust document, by itself, does not offer to parents the opportunity to put in their own words what the person needs. Without instructions to inform the successor caregivers and trustees, such a Trust falls short of being successful, even if well-written and funded sufficiently to meet foreseeable special needs.

“Letters of Intent” have long been recommended by estate planning lawyers to clients to express after-death instructions regarding property and to explain why they made certain distribution decisions. Moreover, lawyers tell clients to write in their own words their explanations, feelings, and emotions in the Letters of Intent to augment the necessary “legalese” in the wills and trusts. These “Letters of Intent” are just as important (if not more important) for families with members having special needs.

Regardless of where the person with the disability lives –– in the parents’ home, a group home, or in his or her own home –– the parents should communicate to successor caregivers and trustees in a Letter of Intent their knowledge and experience vital to their disabled child’s best interest.

Successor caregivers and trustees appreciate realistic information in a Letter of Intent depicting what the parents have been doing for the person. Practical concerns of the caregivers can be alleviated if parents clearly describe how they provided special care. Their successors will then know how to care for the person with disabilities.

To be most useful, Letters of Intent should address the following subjects:

Identifying information about the person and those caring for the person; Medical information including providers, resources, and treatments; Personality traits and personal preferences; Need for personal care assistance; Meal preparation and any assistance needed to eat; Necessary and preferred activities; Abilities and disabilities; Hopes and fears the parents have for the person; Any other general information.

Identification. In addition to the person’s name, Social Security number, birth date, address, and phone number, the person’s known diagnoses are necessary. Important people contacts for the person should be included: guardians, trustees, caregivers, close friends, and family members.

Medical. Begin with identifying and contact information about primary care physicians, specialists, dentists, and other therapists (such as psychologists or physical therapists). Include payment sources such as private insurance and Medicaid and remember to include account balances. The hospital and pharmacy used by the person should be specified.

List medications, schedules and dosages, as well as the physicians who prescribed them. Allergies to medications (as well as to insect bites, food, or chemicals) should be specified. Finally, give instructions for special procedures which have worked well when taking the person to the physician or dentist, or for taking medications and doing various therapies.

Personality. Describing personality traits and personal preferences gives the parents the opportunity to tell how the person with a disability responds to certain stimuli based upon years of care. Successor caregivers and trustees can be prepared for, rather than be put off by such idiosyncrasies.

The person’s likes and dislikes should be catalogued with the best methods for coping with problems. Parents should state the person’’s favorite activities, clothing style preferences, and favorite places to visit. Describe the person’s shoe and clothing sizes and any special adjustments necessary (e.g., orthotics).

Personal care. Describe any personal care assistance that might be necessary to get the person to take his or her medicine (e.g., put pills in apple sauce or draw and give insulin shots). How does the person dress? Must appropriate clothes be laid out, or does the person pick her own clothes to wear each day?

Parents should fully inform caregivers and trustees about how the person functions. Is assistance needed with buttoning clothes or tying shoes? Is assistance needed with a bath or shower? How does the person complete personal hygiene from caring for his or her hair to shaving? What, if any, assistance does the person need with toileting?

Meals. Meals and nutritional topics are often big issues for persons with disabilities. Does the person fix his or her own meals? Can some meals be prepared by the person? If so, which? What are the person’’s food allergies or likes/dislikes. Can the person cut food for herself or must someone else cut the food to be eaten? Can the person feed himself or herself? Does the person need prompting to eat nutritious food? Does the person have a special diet?

Activities. Describe everything the person does from expected chores to leisure activity preferences. Does the person do any housework or lawn maintenance? What hobbies, entertainment, or recreation does the person have? What is the person’s daily routine? Does the person like to go to public events or church services, sports events, shopping malls, grocery stores, or the movies?

Does the person work? If so, where is the jobsite? Are any accommodations such as job coaching provided? Does the person attend a school or day program? If so, what instructions should be given regarding the person’s attendance and participation?

Abilities/disabilities. Try to detail the person’s abilities to hear, see, speak, walk, remember, concentrate, understand, stand, sit, and be coordinated. Medical equipment or supplies such as glasses, braces, dentures, hearing aids, canes, wheelchairs, or walkers should be specified.

Inform the successor caregivers and trustees how the person gets along with other people –– both acquaintances and strangers. Describe not only what upsets the person (“hot buttons”) but also what calms them down.

Hopes/fears. State the hopes and goals for the family member who is disabled, or the successors can assist with accomplishing them if known. Conversely, anything which makes the parents anxious or fearful about their family member should also be included so that successor caregivers will know what to look out for or avoid.

Additional comments. Anything else about the person in addition to what was categorized elsewhere in the Letter of Intent should be provided in the parents’ words. Write freely –– this will be your opportunity to educate those who follow in your footsteps.

The Letter of Intent should be copied and given to successor caregivers, trustees, and the lawyer who drafted the Special Needs Trust. In conclusion, a well-done, comprehensive Letter of Intent for successor caregivers and trustees can help assure as high a quality of care as that provided by the parents. In today’s world, parents who have done a Special Needs Trust should communicate what they want in the Letter of Intent and expect no less.

This newsletter is not intended as a substitute for legal counsel. While every precaution has been taken to make this newsletter accurate, we assume no responsibility for errors or omissions, or for damages resulting from the use of the information in this newsletter. If you would like to be removed from our distribution list, please email us or call us at (518) 881-1621