34 THE QUEENS COURIER • HEALTH • FEBRUARY 18, 2021 FOR BREAKING NEWS VISIT WWW.QNS.COM
Elder Law Minute TM
The Special Needs Trust Fairness Act is now law
BY RONALD A. FATOULLAH, ESQ.
AND STACEY MESHNICK, ESQ.
A very important bill which was introduced in
Congress several years ago, and which will help to
provide equality for disabled individuals, has fi nally
When a disabled person who is in receipt of or in
need of government benefi ts receives assets from a
personal injury settlement or from an inheritance,
it may be appropriate to establish a special needs
trust in order to maintain eligibility for such benefi
ts (because otherwise the receipt of a big settlement
Control, loss of control and aging
Crisis, stress and coping have shown the importance
of a sense of control in preventing illness, disability
and deterioration. However, some people can
lose their incentive for eff ectively exerting control
over their lives and may become overwhelmed with
a sense of apathy and inertia. Stress, chronic illness
and depression in the aged individual will, in time,
erode one’s self-esteem and induce feelings of “oldness.”
In these cases it is not uncommon for the old
person to seek allies to whom they can safely relinquish
control. According to the researchers Linn and
Hunter, “Aged people of both sexes with various
socio-economic and educational backgrounds, varied
degrees of self-esteem and a satisfi ed life will usually
feel young and capable when they set out to manage
and maintain their internal control.”
A serious decline and a loss of physical health is
often a precursor to a loss of control and can signal
an inevitable acceptance of oncoming impairments,
disabilities, discomfort and old age. An interpretation
of independence changes with age. To the
young, independence is seen as a newfound freedom;
to the middle aged, an achievement of normalcy
in life-adulthood and self-worth; and to the adult
in late maturity and old age, it is not only an aspect of
normalcy but also something to be protected. Health
professionals and family members usually expect the
elderly to look, feel and portray themselves as sick.
Many old people however, are mostly active, creative,
involved and to a certain degree, independent, with
suffi cient resources of their own.
The number of Americans over the age of 85 years
is increasing rapidly – a positive sign for a longer
existence. However, a longer life span places their
independence in jeopardy from unforeseeable accidents,
rapid changes in health, fi nancial burden or
even the death of a spouse.
Dependence is not necessarily a bad word. There
are always the negatives and positives in a dependent
posture. We have all experienced feelings of
being dependent at one time or another and in various
situations. Being self-suffi cient is also a matter of
degree. To be considered as independent in today’s
society, one must meet socially defi ned norms e.g.
physical, mental, social, as well as economic. The
question that arises is, what about those who continue
being dependent and will almost never achieve
a state of autonomy? This can occur when the support
that is needed is either inadequate or missing
during critical stress periods. Dependence can
also be “cultivated” by caregivers who consciously
or even unconsciously assume a role as protector
of the people assigned to them for their daily care.
Unfortunately, a problem that frequently happens
in understaff ed facilities is where staff are giving
patient care and must rush through their work due
to the constraints of caring for an excessive number
of assigned patients. This tends to halt the care that
was being rendered as partially unfi nished and with
a dissatisfi ed patient. Also, the patient has no means
of control for insisting on having the care completed.
Here are several suggestions for combating helplessness
Identify issues in which the aged individual needs
to have control over personal items, selection of
clothes for daily wear, etc.
Provide realistic opportunities for choice of books,
Off er information and rationale for situations in
which the individual does not have control.
There is a practice known as “symbols of control”
and is a substitute for real infl uence.
The following case study is about Catherine, a resident
in a facility where I was employed, where the
above-mentioned practice was used.
Catherine owned a cane, a walking cane that for
her conveyed authority. She kept it near her at all
times, even slept with it and threatened to use it to
defend herself if and when necessary. Unfortunately
it was lost in her transfer to another facility that was
closer to her daughter. She commented rather angrily,
as she was leaving, “Well I think they’ve about got
me now. I am lost without my cane.” That cane was
Catherine’s symbol of control. My advice to staff and
family, when dealing with a vulnerable patient, is to
be alert to those symbols of control. They might be
family photos, favorite garments, compulsive placement
of personal articles, etc. In addition, from
my years of working in the long-term care arena,
I’ve noticed nurses and other staff who periodically
employ symbols of power and control, such as uniforms
that convey prime authority, standing above
a bedridden patient instead of bending to eye level
while conversing, walking into a patient’s room without
announcing oneself or asking for permission to
enter. The above examples convey an impression of
impatience and a lack of courtesy to that patient.
I urge my colleagues to avoid the use of these and
other practices that encourage the use of symbols of
control while caring for patients who are most vulnerable
and can’t resist.
The researcher Bokavee states, “Control or the lack
of it, i.e. the uncontrollability of negative thoughts and
images is a central component of worry.” He states further,
“Worry has a negative impact on the psychological
life; the feelings and events in one’s life are as a
result of fate, chance or luck that creates worry.”
I ask the reader, what are the problems that worry
you? Here are several that come to mind.
Are your vision and hearing getting worse?
Are you no longer able to get around by yourself
as you used to?
Are you able to provide care for a spouse if you
become sick or disabled?
Do you have a serious illness or accident that limits
Are your refl exes slowing down with an increase of
Do you feel you won’t be able to drive your car
Dr. Sheldon Ornstein
is a registered professional
a doctoral degree in
He has specialized
in the care of
older adults and has published many
articles on the subject. He has done
post-graduate work in gerontology
and has taught at several universities.
In 2013, he was inducted into
the Nursing Hall of Fame at Teachers
College, Columbia University.
I don’t have concrete answers or a solution to
these questions. However, if I was asked to design a
“how to” plan of action, I would respond in the following
Discuss with relatives and friends who have similar
issues regarding worry and lack of control over their
lives and how they dealt with it.
Seek professional advice from a recognized selfhelp
organization that off ers social support and assistance
to the elderly population.
Seek either medical treatment, legal consultation,
spiritual guidance or perhaps all three.
Investigate the possibility of a facility admission.
Visit that facility, observe its physical layout, its cleanliness,
its recreational activities and how meals are
prepared and served.
Final thoughts: My fervent hope is for a brighter
tomorrow, a joyful new-new year, a miracle vaccine,
and multiple celebrations everywhere.
Stay well, stay safe, stay positive and begin, once
again, enjoying the gift we’ve been given…life!
Sheldon Ornstein Ed.D, RN, LNHA
or inheritance would put the individual over
the allowable resource level). A special needs trust
allows an individual to maintain Medicaid/SSI eligibility
as long as the trust contains a provision that
the government agency will be reimbursed for its
expenditures upon the death of the individual. In
most cases, setting up a special needs trust is the
only option available in order to remain eligible for
government benefi ts. However, until recently, it was
required that a parent, grandparent, court or guardian
establish a Special Needs Trust on behalf of a disabled
individual, even if the individual had the mental
capacity to do so himself.
Fortunately, the Special Needs Trust Fairness Act,
federal legislation that allows individuals with disabilities
to create their own special needs trusts
instead of having to rely on others, is now law. The
measure was included in the 21st Century Cures Act,
a $6.3 billion package of health-related initiatives
signed by President Obama on December 13, 2016.
The Fairness Act, introduced in 2013 by Rep.
Glenn Thompson, fi xes the frustrating drafting error
in the Social Security Act that had prevented people
with disabilities from creating special needs trusts
to hold their own funds. Under prior law, only a parent,
grandparent, guardian or court could establish
a fi rst party special needs trust (a trust which
is set up with the funds of the disabled individual)
to hold the benefi ciary’s assets. This forced competent
people with disabilities to incur unnecessary
expense and waste time to set up trusts that they
could otherwise have created on her own with the
help of an attorney. The Special Needs Trust Fairness
Act inserts language into the Social Security Act to
give individuals with special needs the same right
to create a trust as a parent, grandparent, guardian
or court. If competent to do so, individuals can
now create trusts on their own behalf using their
own assets. These trusts must still contain provisions
that Medicaid will be reimbursed from the
estate upon death.
Before the Fairness Act, it was demeaning for
adults with capacity to be told they had to ask a parent
or grandparent to help them establish a trust.
For those people without a parent or grandparent,
attorneys had to obtain court jurisdiction to establish
a trust. Once an attorney was in court, the court
often placed the trust under ongoing court supervision.
This meant that the disabled individual’s funds
had to be used to pay attorney’s fees, bond, fi ling
fees, accounting, etc., instead of being used for the
individual’s own needs. Disabled people who had
capacity, but didn’t have a parent or grandparent,
were subjected to these unnecessary costs and fees,
which is fundamentally unfair.
The Fairness Act will apply to trusts established
on or after December 13, 2016, the date that the
Cures Act was enacted.
Ronald A. Fatoullah, Esq. is the principal of Ronald
Fatoullah & Associates, a law fi rm that concentrates
in elder law, estate planning, Medicaid planning,
guardianships, estate administration, trusts, wills,
and real estate. Stacey Meshnick, Esq. is a senior
staff attorney at the fi rm who has chaired the fi rm’s
Medicaid department for over 15 years. The law fi rm
can be reached at 718-261-1700, 516-466-4422,
or toll free at 1-877-ELDER-LAW or 1-877-ESTATES.
Mr. Fatoullah is also a partner with Advice Period, a
wealth management fi rm, and he can be reached at