September 26, 2017

Supported Decision-Making Introduction to SDM and Lessons Learned from Pilot Projects

October 25, 2019 Michael Kendrick and Anna Krieger, Center for Public Representation

www.supporteddecisions.org

Presentation Goals

• To put supported decision-making (SDM) into the context of the history and experience of guardianship

• To explain the concepts underlying SDM

• To hear from people who have used SDM in their lives

• To learn that SDM is a logical extension of self-determination

Guardianship

• Today it is estimated 1.5 million adults in United States are under guardianship, maybe as many as 3 million.

• Decision-making methods for guardians: Best interest of the person under guardianship

Substituted judgment deciding what the person would decide if competent, taking into consideration the person’s express preferences

Both methods result in SUBSTITUTED decision-making

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Guardianship pros and cons

Pros

• Offers some protections and safeguards against abuse

• Provides a standard for decision-making

• No ambiguity about who is the decider

• Provides 3rd parties (doctors, lawyers, etc.) certainty about the validity of decisions and actions

Cons

• Loss of legal personhood: “civil death”

• No right to make your own decisions about your own health, who you choose to associate with, what to buy with your own money

• Denied the “dignity of risk” -- opportunity to try new things, to test limits, to discover capabilities you never knew you had

• LESS LIKELY TO LIVE IN THEIR OWN HOME OR APARTMENT

• LESS LIKELY TO HAVE A JOB IN THE COMMUNITY

• LESS LIKELY TO HAVE FRIENDS

Under Guardianship people are…

Alternatives to Guardianship

• Health care proxies

• Durable powers of attorney

• Trusts

• Special education authority delegation

• Representative payee

AND…

• MORE INDEPENDENCE

• MORE DIGNITY

• MORE FREEDOM

SUPPORTED DECISION-MAKING

Supported Decision-Making Definition

SDM is an alternative to guardianship that allows an individual with a disability to work with personally chosen supporters and make decisions about his or her own life.

Supported Decision-Making Internationally

Canada, Israel, Ireland, Latvia, Hungary, Bulgaria, Australia, Czech Republic, Croatia, Georgia, India, Peru, Argentina, Costa Rica, Columbia, Sweden

How Does Supported Decision-Making Work?

JOHNATHAN

• JOHNATHAN’S STORY https://youtu.be/jel5gmf77JY

It’s not a new concept.

How does SDM work? • Individuals receive necessary supports to make a

decision on issues – big or small – affecting their lives

• Individuals choose one or more trusted people to assist them to make decisions – friends, family members, relatives

• Relationship between individual, supporter is built on trust and commitment

• SDM recognizes that will and preferences are the core of decision making abilities

• SDM is consistent with concepts that people may be competent in some areas even if not in others

Common Person-Centered Practices Consonant With SDM Practices

• Social Inclusion

• Person centered planning

• Upholding human rights

• Self-determination

• Circles of support/intentional networks

• Targeted individualized support

• Least Restrictive practices

• Use of natural supports

SDM Agreement

Document in which the SDM user identifies:

• supporter(s)

• areas of decision-making requiring assistance

Customized to reflect SDM user’s life

SDM Agreement Can Address…

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Voting

Finances

Living Arrangements

Relationships Healthcare

Association

Employment

Education

SDM Agreement: notarized

Health Care Proxy

Power of Attorney

Supported Decision- Making Agreement

Decision Supporter Role

Decision Supporter Role • Supporters and SDM user

discuss possible decisions and the ramifications of those choices/decisions.

• SDM user his/her own decision.

• Supporters honor/respect SDM user’s decision. No requirement to agree with a person’s preference or decision.

• Where necessary, supporters help to communicate the SDM user’s decision to involved community members.

Decision Supporter Role: Dignity of risk

• Respect, hard though it may be, person’s right to make a “bad” decision

• Honor the potential “dignity of risk” – the person has the opportunity to try new things, to test limits, to discover capabilities ….and to avoid unreasonable risks

• Acknowledge the risk of falling, of failing …and the courage to persevere, to keep trying

Supported Decision-Making is How Many People Make Their Decisions

• Most people reach out to others they trust when faced with a challenging decisions

• Who people reach out to for support varies depending on the type of decision they seek help with

• People may want support on decisions :

– Involving the freedom to do something or

– Ensuring freedom from something

• "Support” provided can be one-on-one, or a group of supporters can gather to assist the individual with a decision.

Supported Decision-Making and Personal Growth

• Individuals can grow by recognizing, appraising and addressing factors that have led to both poor decisions and sound decisions

• SDM “practice” is typically “developmental” in nature, i.e. people can further develop their capacities as decision makers

• Decision supporters can also further develop their capacities as a supporter

• People can intentionally be assisted to learn, grow and evolve in their capacities from being supported with their decision making

Supported Decision-Making and Personal Growth

• This can include many aspects of decision making such as…… – gaining greater clarity of personal values and

priorities, – being able to identify missing but needed information

bearing on a decision, – identifying where one needs to learn more, – developing the ability to resist pressures from others

around decisions, – having an organized way to make decisions, and – identifying who could be a useful resource on a given

decision

Supported Decision-Making and Personal Growth

• An individual can grow – by recognizing, appraising and addressing factors that

have led to both poor decisions and sound decisions

– by selecting supporters that are affirming of the focus person as a decisions maker but with a view to helping them advance with their decision making abilities over time

• Good decisions are potential pathways to enriched life opportunities and greater life satisfaction, as is learning from poor decisions and their impact on one’s life

• GROWTH & LEARNING

• COME FROM EXPERIENCE

• EXPERIENCE INCLUDES TAKING RISKS

• TAKING RISKS INCLUDES THE

POSSIBILITY OF FAILURE

Massachusetts SDM Pilots

CPR has been piloting SDM Across Massachusetts

• First pilot was a Nonotuck Resource Associates and CPR partnership. – Ages ranged from 24-79

years – All users had I/DD, some

mental health disabilities • Now five additional SDM

pilots across the state with – Massachusetts Families

Organizing for Change – Advocates, Inc. – Northeast Arc – Multicultural Community

Services – Nonotuck Resource

Associates

SDM Pilot in Georgia

• The Georgia Initiative on SDM has had four major foci over a two year period of a Developmental Disabilities grant – Working with 13 individuals with disabilities across the

state re using SDM via the GAO supported Citizen Advocacy program throughout the state

– Making SDM training, symposia & consultation available to people and groups interested in SDM within GA

– Assisting GAO in its efforts to promote SDM

– Linking people in GA to SDM resources available nationally and internationally e.g. videos, webinars, publications, conferences, websites, etc.

Did SDM place individuals at risk of abuse, neglect or exploitation?

Pilot Evaluation Finding: SDM adopters in MA did not experience abuse, neglect or financial exploitation through use of SDM.

Pilot participants stated that the structure of SDM reduces risk of abuse because:

(1) They choose people they can count on to help them make decisions and

(2) They have more than one supporter

Did SDM make a difference for SDM adopters?

Pilot Evaluation Finding: Positive changes occurred for SDM adopters who exercised their decision making rights with tailored decision assistance from trusted supporters.

SDM adopters reported increases in: • increased pride • self-confidence • happiness • willingness to try new experiences • taking greater control of their health &

mental health care • helping others more

Feedback from SDM adopters It’s really fun. It helps people with disabilities have their independence even though they have support through it all.

It feels so much better because my parents aren’t so in charge of me anymore. I have some independence now.

Feel good. Life is better. Explain to me. Have people I trust and like.

I have a new leaf on family tree.

Helping people with their problems. I help my co-workers. I feel more confidence and stronger.

MY SDM AGREEMENT

AMANDA

• AMANDA’S STORY https://www.youtube.com/watch?v=egKyIf7kK5o

QUESTIONS?

CENTER FOR PUBLIC REPRESENTATION

Michael Kendrick PhD Center for Public Representation mkendrick@cpr-ma.org 22 Green Street, Northampton, MA 01060 413-586-6024

Anna Krieger Center for Public Representation akrieger@cpr-ma.org 246 Walnut St Newton, MA 0246 617-965-0776

Resources and stories: www.supporteddecisions.org