Planning for families of people with special needs

Estate planning is for the benefit of our clients’ spouses, families and other beloved individuals. No one enters into an estate plan for their own benefit. By definition the fruits of this labor will inure to the benefit of third parties. The benefit to the party undertaking the planning is primarily peace of mind.

Nowhere is this desire for peace of mind more evident than in planning for a loved one of a person with special needs. The prevailing concern I hear from parents and siblings of people with special needs is “who will take care of my loved one when I die?” Following up that question, I will ask: “how do you want your loved one cared for, and how will the person you entrust your loved one to know what to do?” Quite often the answer is: “I never thought about that before.”

Special needs can take many forms; they may be physical, cognitive, behavioral, psychological or even medical, and we often forget that medically fragile individuals are people with special needs.

In order to assist clients in creating a holistic plan for the families of persons with special needs, it is helpful to consider the following:

Last Will and Testament with Supplemental Needs Trust
The days of disinheriting a loved one with special needs and trusting that the estate beneficiaries will “do the right thing” are long past. In 1978, New York State codified the rule set forth in Matter of Escher1 by enacting New York Estates, Powers and Trusts Law 7-1.12. This section provides safe harbor language to ensure the creation of a valid supplemental needs trust (SNT).

The assets held in the testamentary SNT are unavailable for the purposes of Medicaid and other governmental programs. While Medicaid planning may not be a primary concern for all families, the eligibility for Medicaid and other government benefits will often be threshold criteria for participating in certain beneficial programs.

If the person with special needs is a minor, provisions should be included in the Will to address the ongoing guardianship of this person through their minority. Often I will also state the clients’ intent such as:
It is my express wish and direction that my children, Richard and Jane, reside together and not be separated. Further, I direct that my son, Richard, be maintained in the community for as long as it is in his best interest. In the event it is in Richard’s best interest to reside in a facility, I direct that the facility be in the geographic region in which Jane resides.

Stand Alone Gifting Supplemental Needs Trust
It is also helpful to have the clients enter into a free standing inter vivos irrevocable Supplemental Needs Trust. This will allow other loved ones to make gifts or leave bequests to the person with special needs without endangering their benefits. It also simplifies the estate planning of these well-meaning third parties as they can simply leave the bequest for the individual to the trustee of the “Richard Special Needs Trust dated ##/##/####.”

Standby Guardian Designation for Minors
We all know that the probate of a will and the appointment and qualifications of guardians does not happen immediately. We also know that the needs of minors and particularly the needs of minors with special needs do not wait for the wheels of justice. These needs continue, and they take on a new urgency in the event of the death or serious injury of a parent.

SCPA 1726 (4) allows for parents of minors to appoint stand-by guardians. These individuals can act immediately upon the happening of the stated event. The standby guardian will be able to act for sixty days prior to seeking qualification in the Court.

SCPA 17-A Guardianship of the Person and Property with Standby Guardian
Many times the family of a person with special needs will have a strong informal support network in place, and will not move for guardianship over the person with special needs. The realities of the world we live in make the appointment of a guardian a necessity.

New York Surrogates’ Court Procedure Act §17-A provides for the appointment of guardians of the person and/or property of an individually diagnosed with mental retardation or developmental disabilities.

If the person with special needs does not have the ability to make medical decisions, and there is no guardian, no one is authorized to make medical decisions. Family doctors and emergency room personnel will likely provide services based on urgent need. However, if the treatment or surgery is not urgent, they may likely decline as no one can consent and treatment cannot be provided without consent. Assuming for a moment that the treatment is provided, who can the physician release information to about what was done and what is needed on an ongoing basis? The answer is no one because the information would be private information protected under the privacy provisions of HIPAA.

The other reality is that there are predatory individuals in our society who may seek to exploit the functional limitations of a person with special needs; the appointment of a guardian of the property can go a long way to avoiding such exploitation or to mitigating the damage.

It is good measure to nominate stand-by guardians in a SCPA 17-A to provide continuity of decision making, in the event of the death or incapacity of the primary guardian.

SCPA 17-A is a guardianship for life and it is not tailored to the needs of the individual. For a person with special needs who functions at a high level, or who may in the future have the tools to meet their own needs, a guardianship under New York Mental Hygiene Law Article 81 may be more appropriate.

MHL Article 81 Guardianship of the Person and Property with Standby Guardian
The statutory mandate of New York Mental Hygiene Law Article 81 is to provide the least restrictive form of intervention tailored to the individual’s needs. If the functional limitations of the individual are eradicated or overcome after the appointment of a guardian, a proceeding can be commenced to discharge the guardian.

Article 81 recognizes that an individual with functional limitations is an individual and that there is no cookie cutter forms of relief. The guardian in an Article 81 proceeding is limited to the express provisions of the Commission and Order and Judgment. This authority can be as broad or as narrow as needed for the particular individual.

A person for whom a guardian is appointed under Article 81 need not be adjudicated as incapacitated, they can be determined to be a Person in Need of a Guardian, and such a distinction can be very meaningful to the self-esteem and individual identity of the person with special needs. It is also a validation to that person of their family’s hopes and dreams that with the appropriate intervention they can live as independently as possible.
Again, the appointment of stand-by guardians to provide continuity of decision-making, in the event of the death or incapacity of the primary guardian is prudent.

Letters/ Memorandums of Intent
Even with the appointment of guardians, either by will, SCPA 17-A or Article 81, the needs of the person with special needs may not be met as well as they were during the lifetime of their primary care-giver or care-coordinator. This is because there is no one else who knows the history and needs of the person with special needs as well as the person who has been there every step of the way.

I often counsel clients to compose a letter or memorandum of intent. I explain that it is the manual for your child. While my 14-year-old daughter of typical abilities would be able to make her needs and history known if I was not around, the same cannot always be said of a person with special needs.

There may be communication limitations, cognitive impairments, psychological limitations, or complex medical histories.

Through a letter of intent, the person who is the primary care giver can compose a virtual “Manual” to the world for their loved one. The letter should include a detailed medical history, allergies, sensitivities and family medical history, the names, locations and contact information for all medical providers. The letter should include insurance and public benefits information as well as copies of any insurance or other cards that would be needed. Family information should be included, who are the close relatives and friends and how do we find them, are there people who this person should never be left alone with and why. Most importantly, the letter should express who this person is, what they like and do not like, what makes them happy and what upsets or unsettles them. I always tell my clients this is your chance to be your child’s voice, while a person of typical abilities can tell a future care giver what helps her fall asleep or feel happy when she is sad, a person with special needs might not be able to, and there really is nothing more important than leaving the tools to fulfill that persons needs and wants.

The letter of intent can be in writing or in video form. If there are particular therapies or things that are needed for the person, with special needs sometimes showing is better than telling and this can be done through a home video in place of or as a supplement to a letter of intent. The letter of intent should be updated annually; a good reminder is the person’s birthday. It is also very important to let the potential caregiver know where the letter of intent is kept since if they cannot find it, they cannot use it.

Peace of Mind
There is no greater gift than the gift of peace of mind. I am reminded of this each time a client completes a plan for his or her loved one with special needs and they hug me instead of shaking my hand and tell me what a relief it is to know that they have done everything they can for their loved one.

Wendy H. Sheinberg, Esq. is a Partner in the law firm of Davidow, Davidow, Siegel & Stern LLP a law firm that concentrates in Special needs, Elder Law, Estate Planning, Guardianships, Estate Administration Trusts and Wills. She is one of fewer than 400 Certified Elder Law Attorneys. She has been certified by the National Elder Law Foundation as a Certified Elder Law Attorney and is one of fewer than 70 Fellows of the National Academy of Elder Law Attorneys and a member of its Board of Directors. Wendy is AV rated by Martindale Hubbell. Wendy is a Member of the Irish American Bar Association of New York; Member of the New York State Bar Association’s Elder Law Section: Health Law Section; Trust and Estate and Trial Lawyers Sections; Member of the Nassau County Bar Association Publications Committee; Board Member Long Beach Lawyers’ Association. Wendy can be reached by calling 516-393-0222 or on line at

1. 94 Misc.2d 952, 407 N.Y.S.2d 106 (Surr. Ct., Bx. Cty., 1978); aff’d mem. 75 A.D.2d 531 (1st Dept., 1980); aff’d 52 N.Y.2d 1006, 438 N.Y.S.2d 293 (1981).