Supported Decision- Making And the Jonathan Martinis Senior - - PowerPoint PPT Presentation

Jonathan Martinis

Senior Director for Law and Policy The Burton Blatt Institute at Syracuse University Project Director, National Resource Center for Supported Decision-Making

Introduction to Supported Decision- Making And the Culture of Coordinated Support

THERE ARE STUPID QUESTIONS

What’s Your Favorite Right?

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RIGHTS=CHOICE

"I am my choices. I cannot not choose. If I do not choose, that is still a choice. If faced with inevitable circumstances, we still choose how we are in those circumstances.”

• Jean Paul Sartre

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RIGHTS=CHOICE CHOICE=SELF-DETERMINATION

• Life control
• People’s ability and opportunity to be

“causal agents . . . actors in their lives instead of being acted upon”

• Wehmeyer, Palmer, Agran, Mithaug, &

Martin, 2000.

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BENEFITS OF SELF-DETERMINATION

People with greater self determination are:

• Healthier
• More independent
• More well-adjusted
• Better able to recognize and resist abuse
• Khemka, Hickson, & Reynolds, 2005;

O’Connor & Vallerand, 1994; Wehmeyer & Schwartz, 1998

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ANOTHER STUPID QUESTION

Are Your Rights Worth ANYTHING If You’re Not Allowed to Use Them?

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AND YET: 2,000 YEARS AND COUNTING

 Ancient Rome: “Curators” appointed for

• lder adults and people with disabilities.

 5th Century Visigothic Code: “people insane from infancy or in need from any age . . . cannot testify or enter into a contract“  Feudal Britain: divided people with decision-making challenges into “idiots” and “lunatics” and appointed “committees” to make their decisions

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GUARDIANSHIP IN THE US

“Plenary” or “Full” Guardianship

• Gives the Guardian power to make ALL

decisions for the person.

• Used in the vast majority of cases-

Teaster, Wood, Lawrence, & Schmidt, 2007.

• “As long as the law permits plenary

guardianship, courts will prefer to use it.”

• Frolik, 1998

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AS WE’VE KNOWN FOR FORTY YEARS

When denied self-determination, people: “[F]eel helpless, hopeless, and self-critical”

• Deci, 1975.

Experience “low self-esteem, passivity, and feelings of inadequacy and incompetency,” decreasing their ability to function - Winick, 1995.

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THE PROBLEM

“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.”

• House Select Committee on Aging, H.R. Rpt.

100-641 (opening statement of Chairman Claude Pepper)

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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

• ther 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 you have ___”
• “Because you’re ___ years old”
• “Because you need help”
• “Because that’s the way its always been”
• “For your own good”

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BUT WE MEANT WELL

“Experience should teach us to be most on

• ur 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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WE MUST’VE MEANT REALLY WELL 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 overbroad or undue 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

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ON THE OTHER HAND

• People with disabilities who exercise

greater self-determination have a better quality of life, more independence, 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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AND

Women with intellectual disabilities exercising more self-determination are less likely to be abused

• Khemka, Hickson, and Reynolds, 2005

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AND

People 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?

If:

• We KNOW that increased self-determination

leads to improved quality of life; AND

• We KNOW that decreased self-determination

can result in decreased quality of life; AND

• We KNOW that some people need more

support as they age or due to disability

Then we need a means of INCREASING self-

determination while STILL providing support

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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

National Resource Center for Supported Decision-Making

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National Resource Center for Supported Decision-Making

EVERYONE has the Right to Make Choices

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Guardians had the power: “[T]o make decisions regarding visitation of individuals with Respondent, Respondent's support, care, health, safety, habilitation, education, therapeutic treatment and, if not inconsistent with an order

• f commitment, residence.”

Court Ordered “Temporary Guardianship”

On Jenny’s:

• Independent Living Skills: “If she had

assistance, she may be able to do that”

• Legal Skills: “she would need assistance to

understand a legal document”

• Money Management: She needs “assistance

with [a] bank account.”

WHY? FROM THEIR 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.”

THEREFORE…

How could Jenny execute a Power of Attorney? “[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.”

PETITIONERS’ SWORN STATEMENT

Jenny Needs Support: To Understand Legal Issues To Understand Medical Issues To Understand Monetary Issues In her Day to Day Life

WHAT THAT ALL ADDS UP TO

JENNY IS A PERSON

We Are All Jenny Hatch

IN OTHER WORDS

A WAY FORWARD: 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.

National Resource Center for Supported Decision-Making

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THINK ABOUT IT

How do you make decisions? What do you do if you’re not familiar with the issue? Taxes? Medical Care? Auto Repairs?

What Do You Do?

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SO, SUPPORTED DECISION-MAKING IS A LOT OF WORDS FOR

Getting help when its needed

Just like you and me

National Resource Center for Supported Decision-Making

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Decisions Jenny had made with Support Sign Power of Attorney Consent to Surgery Medicaid Waiver Individual Service Plan Application for Paratransit Authorization to share medical records Assignment of a Representative Payee

AND JUST LIKE YOU AND ME:

First 4 pages justify guardianship. “However”

• Guardians to be who she wants
• She lives where she wants
• Guardianship for only 1 year – Expired

August, 2014

• Only over 2 things – medical and safety

FINAL ORDER

EVEN DURING the 1 year limited guardianship: “Guardians shall assist Respondent in making and implementing decisions we have termed ‘supported decision making.’“ FINAL ORDER

JENNY GOT JUSTICE

WHERE DO WE GO FROM HERE? WHY GUARDIANSHIP?

KRS 387.580 A person should only receive a guardian if he or she is found to be “disabled” or “partially disabled”

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WHEN IS A PERSON “DISABLED”

KRS 387.510 (8) "Disabled" . . . any person fourteen (14) years of age or older who is: (a) Unable to make informed decisions with respect to his personal affairs to such an extent that he lacks the capacity to provide for his physical health and safety, including but not limited to health care, food, shelter, clothing, or personal hygiene; or (b) Unable to make informed decisions with respect to his financial resources to such an extent that he lacks the capacity to manage his property effectively by those actions necessary to obtain, administer, and dispose of both real and personal property.” (9) "Partially disabled" refers to an individual who lacks the capacity to manage some of his personal affairs and/or financial resources as provided in subsection (8) of this section, but who cannot be found to be fully disabled as provided therein

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• People may be able to “make informed

decisions” some decisions but not others.

• Or be able to “provide for physical health and

safety” only with assistance.

• Or be unable to manage their “financial

resources” unless they get help understanding them.

• Salzman, 2010

Capacity to take medication is not the same as capacity to prescribe it!

THINK ABOUT IT

SO…

If a person can only “make informed decisions” with assistance or support, is s/he “unable”?

ARE YOU?

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WHICH MEANS: ASK A QUESTION

BEFORE seeking or recommending guardianship:

What ELSE Have You Tried?

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OR, AS THE NATIONAL GUARDIANSHIP ASSOCIATION SAYS

“Alternatives to guardianship, including supported decision making, should always be identified and considered whenever possible prior to the commencement of guardianship proceedings.”

• National Guardianship Association Position

Statement on Guardianship, Surrogate Decision Making and Supported Decision Making, 2015

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SUPPORTED DECISION-MAKING CAN HELP PEOPLE “MAKE INFORMED DECISIONS” “PROVIDE FOR HEALTH AND SAFETY” AND “MANAGE PROPERTY”

Supported Decision-Making can help people:

• Understand information, issues, and choices;
• Focus attention in decision-making;
• Weigh options;
• Ensure that decisions are based on their own

preferences

• Interpret and/or communicate decisions to
• ther parties.
• Salzman, 2011

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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: That EVERYONE has the Right to Make Choices to the Maximum of Their Ability; That you can get help exercising your Right to Make Choices without giving it up; and That there are as many ways to give and get help as there are people

• 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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THAT’S ESPECIALLY IMPORTANT BECAUSE:

Historically, once you’re in a guardianship, its VERY hard to get out

National Resource Center for Supported Decision-Making

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THINK ABOUT IT:

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

National Resource Center for Supported Decision-Making

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GUARDIANSHIP AS A WAY-STATION, NOT A FINAL DESTINATION

• The Court and Guardian's Job is to

MAXIMIZE self-determination and independence

• The Guardian should work to increase self-

determination through Supported Decision-Making or other means

• Then ask the Court to remove or limit

guardianship

National Resource Center for Supported Decision-Making

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IT CAN HAPPEN

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THE ELEPHANT IN THE ROOM: SAFETY

NOTHING: Not Guardianship, Not Supported Decision-Making is 100% "Safe." HOWEVER: Supported Decision-Making Increases Self-Determination (Blanck & Martinis, 2015), which is correlated with increased Safety (Khemka, Hickson, & Reynolds, 2005).

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SIGNS AND SIGNALS –ABUSE AND NEGLECT

Injuries Unusual bruising or abrasions Fear or nervousness Withdrawal

Basic needs not being met Overdependence on another Bills not being paid Living below means Things are missing

BUT REMEMBER: ADULTS ARE ALLOWED

TO MAKE BAD DECISIONS

Health Money Love Living Conditions

WHERE DO WE GO FROM HERE: EVERYONE HAS THE SAME GOAL

We ALL want “a foundation that will foster a lifetime of opportunity and happiness.” “Many of the means to achieving those

• utcomes are the same: enrollment in post-

secondary education, vocational training programs, experiencing work, and developing social networks that foster long-term meaningful relationships and opportunity for continued growth.”

• Gustin, 2015

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A CRITICAL DIFFERENCE

For People With Disabilities: “Figuring out who the different service provider representatives are and what their roles are can take on a life of its own that often

• verwhelms families, mostly because the

different service systems are not always clear

• n what their roles are or get into territorial

role definitions that impact forward progress and planning.”

• Gustin, 2015

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THE PROBLEM: LACK OF COORDINATION

The “fragmented system of services . . . contributing to the failure . . . to prepare [people with disabilities] for the future.” - Katsiyannis, deFur, & Conderman, 1998 “Too often, systems serving [people] with disabilities

• perate in “silos,” focused only on what they provide and

unaware of what others do. Worse, some providers engage in territorial “battles” that duplicate or cancel

• ut others’ efforts.” – Gustin & Martinis, 2016

www.ApostropheMagazine.Com

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THINK ABOUT IT

Special Education, Vocational Rehabilitation, Medicaid Waivers, Mental Health Services, Adult Services ALL can address Education Independent Living Health Care Community Integration SO WHY ARE THEY NOT MORE COORDINATED?

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THE SOLUTION: CREATING A CULTURE OF COORDINATED SUPPORT “We must create cultural change by moving away from separation and silos. Instead, individuals, families, and providers must work together to empower people with disabilities to live independent, productive, and community-included lives. We call this a Culture of Coordinated Support.”

• Gustin & Martinis, 2016

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PUT ANOTHER WAY

How Did YOU get where you are today? Develop short/long term goals Identify opportunities Complete college applications Write a resume Get a job “Most likely all of these experiences happened with support, either from your family or mentors.” Gustin, 2015

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HOW IT LOOKS

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• Education: “Student Led” IEPs
• Employment: “Informed Choice” in

Vocational Rehabilitation

• Medical Care: Person Centered Planning

for Medicaid and Waivers

• Adult Services: Centers for Independent

Living PASS plans, ABLE Accounts

OPPORTUNITIES FOR SDM AND COORDINATED SUPPORT ARE ALL AROUND US

COORDINATED SUPPORT OPPORTUNITY: SPECIAL EDUCATION

The Purpose of Special Education “to ensure that all children with disabilities have available to them a free appropriate public education. . . and prepare them for further education, employment, and independent living.” 20 U.S.C. § 1400(d)(1)(A) (emphasis added).

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Coordination Opportunity: SpEd Transition Services

Transition services are “a coordinated set of activities”

• To “facilitate the child’s movement from school to post-school

activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation;”  Are “based on the individual child’s needs, taking into account the child’s strengths, preferences, and interests; and  Include “instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and, when appropriate, acquisition of daily living skills and functional vocational evaluation.” 20 USC 1401(34)

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Transition Services

Start: “Beginning not later” than the year the student turns 16

(20 U.S.C. § 1414(d)

Continue: At least until student is 21

(34 CFR §300.101)

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YOU HAVE FIVE YEARS

 To “coordinate services”  To “coordinate community experiences”  To “coordinate the development of post- school adult living objectives”  To “coordinate . . . the acquisition of daily living skills”  To “prepare for further employment, education, and independent living”

COORDINATED SUPPORT OPPORTUNITY: VOCATIONAL REHABILITATION VR program provides services and supports to help people with disabilities: “prepare for, secure, retain, advance in, or regain employment” Rehabilitation Act, 2006, § 722 (a)(1)

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ASK YOURSELF

What are the things that keep people with disabilities from working? If you need something/ANYTHING to prepare for work, get a job, or keep a job, you can get it through the VR program

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VR CAN ADDRESS ALL OF IT

Some services that are available:

• Assessments
• Counseling
• Job search and retention services
• Education
• Assistive technology
• Medical and mental health careOn the job training
• Job coaches
• Transportation
• Services to family members (like Day Care!)
• 34 CFR 361.48

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SUPPORT IS BUILT IN!

VR Agencies must ensure that the person can exercise “informed choice” “Informing each applicant and eligible individual . . . through appropriate modes of communication, about the availability of and opportunities to exercise informed choice, including the availability

• f support services for individuals with cognitive or
• ther disabilities who require assistance in

exercising informed choice throughout the vocational rehabilitation process”

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OPPORTUNITIES FOR COORDINATION ARE BUILT-IN!

The Workforce Innovation and Opportunity Act requires VR to “significant emphasis on the provision of services to youth with disabilities”

• U.S. Department of Education, 2014

Federal law requires VR to become involved in Special Education services “as early as possible”

• 34 C.F.R. § 361.22

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COORDINATED: SPECIAL EDUCATION

AND VR CAN Help Students identify work/life goals Link Students to services Give Students work and community living experiences Identify, provide, and fund needed services and supports Build Self-Determination skills

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COORDINATION OPPORTUNITY: PERSON CENTERED PLANNING

Person Centered Plan MUST:  Address “health and long-term services and support needs in a manner that reflects individual preferences and goals.”  Result “in a person-centered plan with individually identified goals and preferences, including those related community participation, employment, income and savings, health care and wellness, education and

• thers.”

www.medicaid.gov/medicaid-chip-program-information/by- topics/long-term-services-and-supports/home-and- community-based-services/downloads/1915c-fact-sheet.pdf

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BRINGING IT TOGETHER

Use Supported Decision-Making across systems to Identify and Coordinate Opportunities and Options Supporters and Teams Goals, Supports, and Services

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BUILDING A COORDINATED SUPPORT TEAM

A Coordinated Support Team can include:  The Person

• The Person's chosen Friends, Family, Professionals
• Educators
• Counselors
• Service Coordinators
• Providers
• Advocates
• Anyone Else who Can Contribute!

THINK BROADLY!

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CREATING A COORDINATED SUPPORT PLAN

Review! Go through each area of the individual's life.

• Example: Financial, Medical, Social, Employment

Brainstorm! Does the person need support in these areas?

• If so, talk about what support could help, who could

provide it, and how

Write! As you develop support solutions, create a written plan for the person and team to use Attach! Include it as part of the person’s IEP, ISP, IPE, and other plans

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MAKING IT HAPPEN: DREAM-INSPIRED PLANNING

• Coordinating and collaborating to create

support plans that build on the person’s dreams.

• Goals and Objectives are created by

working with the person to identify their dreams, the values that make them up, and the education, employment, independent living, and other goals that match up to them

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DREAM-INSPIRED PLANNING: THREE STEPS

Dream: The person identifies and communicates his/her dreams Delve: Conversations between the person and the support coordinator about his/her dreams, the values and visions that make them up, and the implications of them Develop: The person and support coordinator develop program goals and objectives that are consistent with and move the person toward their dreams

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DREAMING

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IT CAN HAPPEN: PROJECT RENEW

Provided young adults with coordinated services including employment planning and training as well as education in independent living skills and social skills- Malloy, 2013.  First year of program

• 93% of participants found employment
• 69% maintained employment for more than 6 months

 2 years after program

• 94% either completed high school or were involved in a high

school program

• 75% were enrolled in post-secondary education
• 83% found employment
• Hagner, Cheney, & Malloy, 1998

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IT IS HAPPENING: VERMONT SUPPORTED DECISION-MAKING TASK FORCE

• Vermont Task Force “to create solutions

and initiatives that transform practices in a way that brings a culture of collaboration”

• Includes consumers, families, and

representatives of the Provider, Legal, Educational, Employment, Advocacy, Mental Health, Aging, and Developmental Disabilities communities

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VERMONT PROJECTS

• Pilot project between DD Provider and Public

Guardian to identify people who could “take care of themselves’ with appropriate supports, plan for and provide the supports, and move to terminate guardianship

• Project between Self-Advocate Group,

Schools, VR, State P&A and State DD Agency to identify students at risk of guardianship and help them receive appropriate supports and services

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VERMONT PROJECTS

Collaboration between Public Guardian, State DD Agency, and State Evaluators to review competency evaluation guidelines to examine whether people are able to make their own decisions if they have appropriate supports Education of people, families, judges, attorneys, and others about alternatives to guardianship

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NEVER FORGET

Supported Decision-Making and the Culture of Coordinated Support can ONLY work if we recognize, respect, and protect EVERYONE’S Right to Make Choices.

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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

• f 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

• nly by daring and effort and resolve.”

Stephen R. Donaldson

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CHANGE THE CULTURE, CHANGE THE WORLD!

“If we create a Culture of Coordinated Support . . . service providers will . . . help people with disabilities dream and lead lives of independence and meaning. If we create a Culture of Coordinated Support, people with disabilities will have the same opportunities for success and security as their nondisabled

• peers. If we change the culture, we will change

the world!” Gustin & Martinis, 2016

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JOIN THE CONVERSATION

The National Resource Center for Supported Decision-Making: SupportedDecisionMaking.Org The Burton Blatt Institute at Syracuse University: BBI.Syr.Edu Jonathan Martinis, Senior Director for Law and Policy: JGMartin@Law.Syr.Edu

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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.

About this Project