“The Right to Make Choices” Supported Decision- Making · 10.02.2013 · EVERYONE has the Right to Make Choices TRIAL STRATEGY: SUPPORTED DECISION-MAKING “a recognized alternative

Jonathan Martinis

Legal Director, Quality Trust for Individuals with

Disabilities Project Director,

National Resource Center for Supported

Decision-Making

“The Right to Make Choices”

Supported Decision-Making

National Resource Center for Supported Decision-MakingEVERYONE has the Right to Make Choices

MARGARET “JENNY” HATCH

Margaret “Jenny” Hatch

Twenty-Nine year old woman

with Down syndrome.

▪High School graduate

▪Lived independently

▪Employed for 5 years

▪Politically active

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National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices 3

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

The Situation: February 2013

National Resource Center for Supported Decision-Making EVERYONE has the Right to Make Choices

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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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.”

Why?


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.”


RECORDS

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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PETITIONERS’ SWORN STATEMENT

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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THANKS!

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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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WHICH MEANS

Jenny is a Person!

We Are All Jenny Hatch

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TRIAL STRATEGY

“I don’t need a guardian. I just need a little help.”

- Jenny Hatch

WE ARE ALL JENNY HATCH

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TRIAL STRATEGY: SUPPORTED DECISION-MAKING

“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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SUPPORTED DECISION-MAKING 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


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….”



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. . .”



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.”


FINAL ORDER

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.’”


Jenny Got Justice


WHY?

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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REALLY, WHY?

Jenny Got Lucky

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WHERE DO WE GO FROM HERE?

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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GUARDIANSHIP IS NEVER NEEDED

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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BUT WE MEANT WELL

“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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REALLY, WE MEANT WELL…

“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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STUDIES

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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AS A RESULT

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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FACT

In Florida,

Plenary Guardians “exercise all delegable legal rights and powers of the ward.”

Fla. Stat. § 744.102(9)(b)

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OPINION

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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NUMBERS

Estimated number of adults under guardianship has tripled since 1995 (Reynolds, 2002; Schmidt, 1995; Uekert & Van Duizend, 2011).

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RESEARCH

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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SELF-DETERMINATION

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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WE’VE KNOWN FOR FORTY YEARS

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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YET MORE STUDIES

People who exercise greater self-determination 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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ONE MORE

Women with intellectual disabilities exercising more self-determination are less likely to be abused (Khemka, Hickson, and Reynolds, 2005)

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NEED PROOF?

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)


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)

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CAPACITY: IT’S COMPLICATED

▪ 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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THINK ABOUT IT

Do YOU lack “capacity” to do some things by yourself:

▪ Taxes?

▪ Auto Repair?

▪ Medical care?

What do you do?42


“CAPACITY” TO MAKE DECISIONS

▪ 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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“TO MANAGE” AND “TO MEET”

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 IF A PERSON IS TRULY INCAPACITATED

“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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WHICH MEANS

Before Guardianship:

What Else Have You Tried?

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“LESS RESTRICTIVE ALTERNATIVES”

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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IT’S A PARADIGM, NOT A PROCESS

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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IN COMMON

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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SUPPORTED DECISION-MAKING AND SELF DETERMINATION

“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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EXAMPLES ARE ALL AROUND US

▪ 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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PRECEDENT: CASE LAW

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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CASE LAW

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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CASE LAW

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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LEGISLATION

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 self-determination of the person.”

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POLICY

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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ETHICAL CONSIDERATIONS

(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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ETHICAL CONSIDERATIONS

“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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DOESN’T THAT SOUND LIKE

Supported Decision-Making?

It’s a Paradigm, Not a Process!

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ESPECIALLY BECAUSE

“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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THINK ABOUT IT

“Restoration”

Means the person has been “restored” to capacity – or

“cured.”

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RESTORATION IN FLORIDA

“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)

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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)

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SO, WHAT IF THE PERSON USES SUPPORTED DECISION-MAKING?

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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DOESN’T THAT MEAN

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

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DOESN’T THAT MEAN

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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REMEMBER THE CHALLENGE

EVERY great advance in civil rights fundamentally changed the way “things have always

been”

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REMEMBER THE OBSTACLES

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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REMEMBER THE GOAL

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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NOT JUST JUSTICE FOR JENNY

Justice for You

Justice for Me

Justice for Everyone

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JOIN THE CONVERSATION

National Resource Center for Supported Decision-Making: SupportedDecisionMaking.Org

Jonathan Martinis, Legal Director [email protected]

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http://supporteddecisionmaking.org/

mailto:[email protected]


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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“The Right to Make Choices” Supported Decision- Making · 10.02.2013 · EVERYONE has the Right to Make Choices TRIAL STRATEGY: SUPPORTED DECISION-MAKING “a recognized alternative