“The Right to Make
Choices”
Supported DecisionMaking
Jonathan
Martinis
Legal Director,
Quality Trust for
Individuals with
Disabilities
Project Director,
National Resource
Center for
Supported
Decision-Making
M ARGARET “J ENNY ” H ATCH
Margaret “Jenny” Hatch
Twenty-Nine year old woman
with Down syndrome.
▪High School graduate
▪Lived independently
▪Employed for 5 years
▪Politically active
National Resource Center for Supported Decision-Making
EVERYONE has the Right to Make Choices
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The Situation: February 2013
Court Ordered “temporary
guardianship”
Segregated group home
No cell phone or computer, Facebook
password changed
Guardians controlled all access to her
Working up to 5 days a week for 8
months – made less than $1,000
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TEMPORARY GUARDIANS GIVEN POWER
“[T]o make decisions regarding visitation
of individuals with Respondent,
Respondent's support, care, health,
safety, habilitation, education,
therapeutic treatment and . . .
residence.”
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Why?
Petitioners’ Expert:
“She’s going to need assistance to
make decisions regarding her
healthcare, her living
arrangements and such like that,
she will need someone to guide
her and give her assistance.”
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And
What would help Jenny?
“I believe what would be beneficial to
Jenny is that she is afforded the
opportunity to have individuals around
her who support and love her, who give
her the assistance she needs.”
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R ECORDS
Case Manager worked with Jenny so she
could understand and sign:
Medicaid Waiver Individual Service Plan
Application for Paratransit
Authorization to share medical records
Assignment of a Representative Payee
Application for an ID Card
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P ETITIONERS ’ S WORN S TATEMENT
How could Jenny execute a Power of Attorney
in 2001?
“[N]ot only did Jenny have an opportunity to
review the documents, but also the attorney
had the opportunity to get to know Jenny and
understand her capabilities and limitations in
understanding legal documents. Based on this
series of observations over several visits, the
attorney concluded, and we concurred, that
Jenny was capable of understanding these
documents.”
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T HANKS !
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JENNY IS A PERSON WHO NEEDS SUPPORT
To Understand Legal Issues
To Understand Medical Issues
To Understand Monetary Issues
In her Day to Day Life
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W HICH M EANS
Jenny is a Person!
We Are All Jenny
Hatch
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T RIAL S TRATEGY
“I don’t need a guardian. I just need a
little help.”
- Jenny Hatch
WE ARE ALL JENNY
HATCH
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T RIAL S TRATEGY : S UPPORTED D ECISION -M AKING
“a
recognized alternative to guardianship
through which people with disabilities
use friends, family members, and
professionals to help them understand
the situations and choices they face, so
they may make their own decisions
without the “need” for a guardian.”
(Blanck & Martinis, 2015).
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S UPPORTED D ECISION -M AKING IS
Something we all do, every day.
Something Jenny has done before
Something Jenny can do well
Something that will increase Jenny’s
abilities and independence
Something that will make her LESS
likely to be abused or neglected
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Obstacles
“Guardianship For Your Own Good”
- Wright, J (2010)
“I have a first cousin who has the same
intellectual disability as Ms. Hatch. I’d want
somebody to take care of her.”
- Judge Pugh: 2/10/13
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Evolution of a Judge
To our Psychologist:
“Would it be fair to say that
incrementally she could begin at a group
home . . .”
“I’m not talking about independence
now. I’m talking about gradual . . . Then
maybe some independence of herself….”
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Evolution of a Judge
To our Expert on Independence
“But given everything that I’ve heard here
today, there are certain issues when you’re
dealing with certain people, and there has to
be some discipline attached.”
“The people who supply these supported
services are only as good as their abilities and
their background and knowledge . . . If
everyone was like you, then I would feel
better. . .”
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Evolution of a Judge
To our Medicaid Expert
“My grandmother said there’s a lot of things that you
want in life that make it the best. . . In a perfect
world, everything you say that could take place
probably could take place. . . But you and I know
that this is not a perfect world.”
“You have a different expertise that lends itself to
telling us . . . What can be accomplished, not what
will be.”
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F INAL O RDER
First 4 pages justify guardianship.
“However”
Guardians to be who she wants
She lives where she wants
Guardianship for only 1 year – ended
August, 2014
Only over 2 things – medical and safety
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FULL Evolution of a Judge
DURING the 1 year limited guardianship:
“Guardians shall assist Respondent in making
and implementing decisions we have termed
‘supported decision making.’“
“‘[A] guardian’s job . . . is to make the
judgment that the individual would make if he
or she was able to express that judgment rather
than say . . . what the guardian thinks would be
right.’”
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Jenny Got Justice
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W HY ?
Jenny is Strong, Smart, Determined
AND
She had support from:
Friends and professionals
National Organizations and Leaders
Media
A Judge who was willing to Listen and
Learn
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R EALLY , WHY?
Jenny Got Lucky
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W HERE D O W E G O F ROM H ERE ?
Guardianship MAY be Needed:
In emergency situations when
▪ The person is incapacitated and cannot give consent
▪ The person did not previously identify how decisions should be
made in that situation
▪ There is no one else available in the person’s life to provide
consent through a Power of Attorney, Advanced Directive, or
other means
To support People:
▪ Who face critical decisions and have no interest in or ability to
make decisions
▪ Who need immediate protection from exploitation or abuse
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G UARDIANSHIP I S NEVER N EEDED
JUST
▪ “Because that’s the way its always
been”
▪ “For your own good”
▪ “Because s/he has ____” or “the IQ of
a __ year old”
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B UT W E M EANT W ELL
“Experience should teach us to be most
on our guard to protect liberty when the
Government’s purposes are beneficent. . .
. The greatest dangers to liberty lurk in
insidious encroachment by men of zeal,
well-meaning but without understanding.”
Olmstead v. U.S., 277 U.S. 438 (1928)
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R EALLY , W E M EANT W ELL …
“Full” or “Plenary” Guardianship
▪ Gives one person power to make ALL
decisions for another.
▪ Used in the VAST majority of cases
“As long as the law permits plenary
guardianship, courts will prefer to use
it.”
(Frolik, 1998)
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S TUDIES
More than 90% of guardianships reviewed
were plenary (Teaster, Wood, Lawrence, &
Schmidt, 2007).
87% of guardianships reviewed were plenary
(Lisi, Burns, & Lussenden, 1994).
54% of the cases reviewed resulted in plenary
guardianship but almost no difference
between “plenary” and “limited”
guardianship (Millar & Renzaglia, 2002).
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A S A R ESULT
Guardians have “substantial and often
complete authority over the lives of
vulnerable [people].”
4 NAELA J. 1, 7 (2008).
This includes power to make the most basic
personal and financial decisions.
AARP, Guardianship Monitoring: A National
Survey of Court Practices 1-2 (2006).
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F ACT
In Florida,
Plenary Guardians “exercise all delegable
legal rights and powers of the ward.”
Fla. Stat. § 744.102(9)(b)
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O PINION
The typical ward has fewer rights than the
typical convicted felon . . . . By appointing a
guardian, the court entrusts to someone
else the power to choose where they will
live, what medical treatment they will get
and, in rare cases, when they will die. It is,
in one short sentence, the most punitive civil
penalty that can be levied against an
American citizen.
(H.R. Rpt. 100-641 (opening statement of
Chairman Claude Pepper))
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N UMBERS
Estimated number of adults under
guardianship has tripled since
1995
(Reynolds, 2002; Schmidt, 1995;
Uekert & Van Duizend, 2011).
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R ESEARCH
People under guardianship can experience
a “significant negative impact on their
physical and mental health, longevity,
ability to function, and reports of
subjective well-being”
(Wright, 2010, p. 354)
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S ELF -D ETERMINATION
Self-Determination = Control over one’s
life
When people exercise self-determination,
they become “causal agents . . . actors in
their lives instead of being acted
upon” (Wehmeyer, Palmer, Agran,
Mithaug, & Martin, 2000, p. 440).
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W E ’ VE K NOWN F OR F ORTY Y EARS
A person denied self-determination can
“feel helpless, hopeless, and self-critical,
and will not behave because he can see
no use in behaving”
(Deci, 1975, p. 208).
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Y ET M ORE S TUDIES
People who exercise greater selfdetermination have a better quality of
life, better employment, and more
community integration.
(Powers et al., 2012; Shogren, Wehmeyer,
Palmer, Rifenbark, & Little, 2014;
Wehmeyer and Schwartz, 1997; Wehmeyer
& Palmer, 2003)
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O NE M ORE
Women with intellectual
disabilities exercising more selfdetermination are less likely to
be abused
(Khemka, Hickson, and Reynolds,
2005)
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N EED P ROOF ?
Floridians with Intellectual and
Developmental Disabilities who do NOT have a
guardian are more likely to:
Have a paid job
Live independently
Have friends other than staff or family
Go on dates and socialize in the community
Practice the Religion of their choice
2013-2014
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So, Where DO We Go From Here?
“When an order determines that a person is
incapable of exercising delegable rights, the
court must consider and find whether there is
an alternative to guardianship that will
sufficiently address the problems of the
incapacitated person. A guardian must be
appointed to exercise the incapacitated person's
delegable rights unless the court finds there is an
alternative. A guardian may not be appointed if
the court finds there is an alternative to
guardianship which will sufficiently address the
problems of the incapacitated person.”
Fla. Stat. § 744.331(6)(b)
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WHEN IS A PERSON TRULY INCAPACITATED ?
“’Incapacitated person’ means a person
who has been judicially determined to
lack the capacity to manage at least some
of the property or to meet at least some
of the essential health and safety
requirements of the person.”
Fla. Stat. § 744.102(12) National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices
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C APACITY : I T ’ S C OMPLICATED
▪ Can change based on experience or
situation.
▪ Can change based on support given.
▪ Lack of opportunity to make decisions
can prevent people from developing
capacity or further decrease capacity.
(Salzman, 2010)
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T HINK A BOUT I T
Do YOU lack “capacity” to do some things
by yourself:
▪ Taxes?
▪ Auto Repair?
▪ Medical care?
What do you do?
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“C APACITY ” T O M AKE D ECISIONS
▪ People may have “capacity” to make some
decisions but not others.
▪ Or be able to make decisions some times
but not others.
▪ Or be unable to make decisions unless they
get help understanding the decision to be
made.
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“T O M ANAGE ”
AND
“T O M EET ”
What does that mean?
Is there more than one way to do that?
Do you “manage” and “meet” your
needs in more than one way?
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SO…
If a person can “manage” or
“meet” his or her needs with
assistance or support, is s/he
incapacitated?
ARE YOU?
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EVEN I F A P ERSON IS TRULY I NCAPACITATED
“A guardian may not be
appointed if the court finds there
is an alternative to guardianship
which will sufficiently address the
problems of the incapacitated
person.”
Fla. Stat. § 744.331(6)(b) National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices
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W HICH M EANS
Before Guardianship:
What Else Have You
Tried?
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“L ESS R ESTRICTIVE A LTERNATIVES ”
Methods or strategies that help an “incapacitated”
person make decisions WITHOUT a guardian:
▪ Supported Decision-Making
▪ Power of Attorney
▪ Advanced Directive
Guardianship is only appropriate if
there are NONE available.
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I T ’ S A P ARADIGM , N OT A P ROCESS
There is no “one size fits all” method of
Supported Decision-Making.
Can include, as appropriate
Informal support
Written agreements, like Powers of
Attorney, identifying the support needed and
who will give it
Formal Micro-Boards and Circles of Support
(Martinis, Blanck, and Gonzalez, 2015).
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I N C OMMON
ALL Forms of Supported Decision-Making recognize:
The person’s autonomy, presumption of capacity, and
right to make decisions on an equal basis with others;
That a person’s can take part in a decision-making
process that does not remove his or her decision-making
rights; and
People will often need assistance in decision-making
through such means as interpreter
assistance,
facilitated
communication,
assistive technologies
and plain language
(Dinerstein, 2012).
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S UPPORTED D ECISION -M AKING AND S ELF
D ETERMINATION
“Supported Decision-Making has the potential
to increase the self-determination of older
adults and people with disabilities,
encouraging and empowering them to reap
the benefits from increased life control,
independence, employment, and community
integration”
(Blanck & Martinis, 2015)
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E XAMPLES
ARE
ALL A ROUND U S
▪ The “Student Led” IEP
▪ “Informed Consent” to medical care
▪ “Informed Choice” in Vocational Rehabilitation
▪ “Person Centered Planning” in Estate and End of
Life Planning
ARE ALL SUPPORTED DECISION-MAKING
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P RECEDENT : C ASE L AW
In re Peery, 727 A.2d 539, 540 (Pa. 1999).
Guardianship terminated because person
“has in place a circle of support to assist
her in making rational decisions
concerning her personal finances and to
meet essential requirements of health and
safety.”
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C ASE L AW
In re Dameris L., 956 N.Y.S.2d 848, 856 (N.Y. Sur.
Ct. 2012).
Guardianship terminated because person
“able to engage in supported decision making.. . .
proof that a person with an intellectual disability
needs a guardian must exclude the possibility of
that person’s ability to live safely in the community
supported by family, friends, and mental health
professionals.
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C ASE L AW
Ross v. Hatch, No. CWF120000426P-03 (Va. Cir.
Ct. Aug. 2, 2013), available at http://
jennyhatchjusticeproject.org/docs/
justice_for_jenny_trial/
Permanent guardianship denied. Friends
Jenny chose will “assist [Ms. Hatch] in
making and implementing decisions we
have heard termed ‘supported decision
making’”
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L EGISLATION
Volunteer-Supported Decision-Making Advocate
Pilot Program, Tex. Gov't Code Ann. § 531.02446
(2009)
Created a program to train volunteers to
support people in making “life decisions such as
where the person wants to live, who the person
wants to live with, and where the person wants
to work, without impeding the selfdetermination of the person.”
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P OLICY
Administration for Community Living
Grant HHS-2014-ACL-AIDD-DM-0084
Funding to create “a national training and
technical assistance center on . . .
supported decision making.”
Supported Decision-Making is “an
alternative to and an evolution from
guardianship”
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E THICAL C ONSIDERATIONS
(a) Maintenance of Normal Relationship. When
a client's ability to make adequately
considered decisions in connection with the
representation is impaired, whether because
of minority, mental disability, or for some
other reason, the lawyer shall, as far as
reasonably possible, maintain a normal
client-lawyer relationship with the client.
Florida Rules of Professional Conduct, Rule
4-1.14(a)
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E THICAL C ONSIDERATIONS
“The normal client-lawyer relationship is based on the
assumption that the client, when properly advised
and assisted, is capable of making decisions about
important matters. When the client is a minor or
suffers from a mental disorder or disability, however,
maintaining the ordinary client-lawyer relationship
may not be possible in all respects. In particular, an
incapacitated person may have no power to make
legally binding decisions. Nevertheless, a client
lacking legal competence often has the ability to
understand, deliberate upon, and reach conclusions
about matters affecting the client's own well-being.”
Comment to Rule 4-1.14
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D OESN ’ T T HAT S OUND L IKE
Supported Decision-Making?
It’s a Paradigm, Not a
Process!
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E SPECIALLY B ECAUSE
“A lawyer may seek the appointment of a
guardian or take other protective action
with respect to a client only when the
lawyer reasonably believes that the client
cannot adequately act in the client's own
interest.”
Florida Rule of Professional Conduct 4-1.14(b)
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THAT’S ESPECIALLY IMPORTANT BECAUSE
Historically, once you’re
in a guardianship, its
VERY hard to get out
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T HINK A BOUT I T
“Restoration”
Means the person has been
“restored” to capacity – or
“cured.”
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R ESTORATION I N F LORIDA
“Any interested person, including the
ward, may file a suggestion of capacity.
The suggestion of capacity must state that
the ward is currently capable of
exercising some or all of the rights
which were removed.”
Fla. Stat. § 744.464(2) National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices
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“CURRENTLY CAPABLE OF EXERCISING”
Remember, Guardianship is ONLY
appropriate if there is NO
“alternative to guardianship which will
sufficiently address the problems of the
incapacitated person.”
Fla. Stat. § 744.331(6)(b) National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices
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S O , W HAT I F T HE P ERSON U SES S UPPORTED
D ECISION -M AKING ?
Isn’t that a way to “manage” or
“meet” needs without a
guardian?
Doesn’t that show the person is
“Currently Capable of
Exercising” the rights that were
removed?
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D OESN ’ T T HAT M EAN
A person under guardianship
who successfully uses
Supported Decision-Making
should not be kept under
guardianship?!
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THE WHOLE POINT OF GUARDIANSHIP
“Recognizing that every individual has unique needs
and differing abilities, the Legislature declares that it
is the purpose of this act to promote the public
welfare by establishing a system that permits
incapacitated persons to participate as fully as
possible in all decisions affecting them; that assists
such persons in meeting the essential requirements
for their physical health and safety, in protecting
their rights, in managing their financial resources,
and in developing or regaining their abilities to the
maximum extent possible”
Fla. Stat. § 744.1012 National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices
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D OESN ’ T THAT M EAN
Guardians should be working to
implement Supported Decision-Making or
other alternatives to help people
develop or regain their abilities?
And once that happens, terminate or
modify the guardianship?
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R EMEMBER T HE C HALLENGE
EVERY great advance in civil
rights fundamentally changed
the way “things have always
been”
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R EMEMBER T HE O BSTACLES
Change is HARD
“We were not promised ease. The purpose of
life . . . is not ease. It is to choose, and to
act upon the choice. In that task, we are not
measured by outcomes. We are measured only
by daring and effort and resolve.”
Stephen R. Donaldson
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R EMEMBER T HE G OAL
Every person the “causal
agent” in his or her life.
▪ We all need help making decisions
▪ Older adults and people with disabilities
may need more or different help but
have the SAME rights
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N OT J UST J USTICE F OR J ENNY
Justice for You
Justice for Me
Justice for Everyone
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J OIN
THE
C ONVERSATION
National Resource Center for Supported
Decision-Making:
SupportedDecisionMaking.Org
Jonathan Martinis, Legal Director
[email protected]
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About this Project
This project was supported, in part by grant
number HHS-2014-ACL-AIDD-DM-0084, from the
U.S. Administration for Community Living,
Department of Health and Human Services,
Washington, D.C. 20201. Grantees undertaking
projects under government sponsorship are
encouraged to express freely their findings and
conclusions. Points of view or opinions do not,
therefore, necessarily represent official
Administration for Community Living policy.
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