1. Supported Decision-Making Apergers Autism Network January 20, 2018
September 26, 2017
Supported Decision-Making Apergers Autism Network January 20, 2018

2. An Introduction to Supported Decision-Making
A revolution in decision-making is sweeping the country for people with disabilities
Substituted decision-making is being replaced with supported decision-making

3. What is substituted decision-making?
Another individual assumes the authority to decide for the person with a disability
May be informal designation, such as family members, relatives
Formal appointment:
guardianship or conservatorship
representative payee
power of attorney
advance directive for health care

4. A few words about guardianship…
On the plus side:
No ambiguity about who is the decider
There is someone to act in an emergency
Third parties – doctors, employers, clergy, etc. – have certainty about the validity of decisions

5. … and on the downside Loss of legal personhood: “civil death”
No right to make your own decisions about your own health, with whom you choose to associate, 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

6. The impact of guardianship on individuals’ lives
Adults with I/DD under guardianship and receiving publicly-funded services are less likely to:
Live in their own homes or apartments
Be involved in making choices about their lives
Have their rights respected
Have community jobs or service plans w/ this goal
Have friends
Source: National Core Indicators Project

7. Decades of guardianship reforms
Limiting guardians’ authorities
Making guardianship a last resort by promoting alternatives such as:
advanced health directives
- durable powers of attorney for financial matters
- special trusts
- Supported Decision-Making

8. What is supported decision-making?
Simple definition: Supported decision-making (SDM) is an alternative to guardianship wherein a person with a disability works with a team of supporters he or she has chosen to reach his or her own decisions.

9. SDM maximizes a person’s independence
Offers opportunities for person with disability to express himself
Offers opportunities for person with disability to indicate preferences
Ensures the person makes her own choices
Promotes self-advocacy, advances self-determination
Provides built-in protections, if needed

10. SDM changes the conversation
Recasts how we think about capacity, meaningful lives and guardianship
Discards the presumption the state needs to intervene and protect
Advances the tenet people with disabilities need to live full, rich and meaningful lives

11. How Does Supported Decision Making (SDM) Work?

12. Core Components of SDM
Individual with a disability receives necessary supports to make a decision on issues – big or small – affecting his/her life
Individual chooses one or more trusted people to assist him/her on decisions
- Friends
- Family members, relatives
- Professionals
Relationship between individual, supporter is built on trust and commitment.

13. SDM Agreement
Document on which the person with disabilities identifies decision supporter(s) and areas where he/she may need decision-making assistance, such as:
Health
Finances
Employment
Education
Relationships
Living arrangements
Typically notarized. May be accompanied by a Health Care Proxy or Power of Attorney.
Add link to SDM website and show SDM Agreement template.

14. Decision Supporter Role
Supporters and individual with a disability discuss possible decisions and the ramifications of those choices/decisions.
Individual with a disability reaches his/her own decision.
Supporters honor/respect individual’s decision. No requirement to agree with a person’s preference or decision.
Supporters communicate / convey individual’s decision to involved community members if necessary.

15. Decision Supporter Role
Respect, hard though it may be, person’s right to make a “bad” decision
Honor the “dignity of risk” -- grant person the opportunity to try new things, to test limits, to discover capabilities
Acknowledge the risk of falling, of failing …and the courage to persevere, to keep trying

16. Massachusetts SDM Pilot

17. SDM Pilot Structure Partnership between Nonotuck and CPR
Advisory Council offers guidance
Independent evaluation by HSRI
Individuals with I/DD enter into SDM Agreements with supporters in specified areas: health, relationships, finances, employment, legal, living arrangements
CPR provides legal representation as necessary
Nonotuck care managers support and monitor individuals

18. SDM Pilot Advisory Council
Representatives include:
People with disabilities
Disability rights advocates
Retired Judges
Attorneys
Medical professionals
Family members
and others...
Link to Paige’s video:

19. SDM Agreements
9 adults with I/DD chose 2 to 10 people to join their decision support networks: parents, siblings, grandparents, aunts, past and current providers
Notarized SDM Agreements identify supporters and areas for decision assistance
Some participants also executed health care proxies and durable powers of attorney
Pilot SDM Agreement: content/uploads/2015/09/SDM-Representation-Agreement-pdf.pdf

20. SDM Pilot Demographic Info
Age
25 to 80 years. When SDM Agreements executed, ages ranged 23 to 78 yrs.
Gender
6 women, 3 men
Primary means of communication
All use speech but there is vocal expression range:
1 uses “yes” and “no” with facial expression
1 relies heavily on text messaging
1 needs a lot of time to process information and respond
ID Diagnoses
2 mild intellectual disability, 6 moderate intellectual disability, 1 without an ID diagnosis
Behavioral health diagnoses
1 Borderline personality disorder, history of suicidal preoccupation
2 Bipolar mood disorder
4 Anxiety disorder
2 Depression/dysthymia
1 attention deficit hyperactivity disorder (ADHD )
1 Psychotic disorder
1 Post-traumatic stress disorder (PTSD)
Home
All live with caregivers using a shared living or family caregiver model. 2 lived for decades in Massachusetts state institutions
Guardian status
2 had full guardians, 1 discharged thus far

21. Amanda’s SDM Arrangement
Decision Support Areas:
Finances, health, living arrangements, legal matters, employment and relationships
Four Supporters:
Mother
Live-in caregiver
Respite worker
Friend-Care Manager
Link to Amanda’s video:

22. Using SDM 9 people made 72 SDM decisions over approximately a year
Health care & financial decisions most frequent, but important decisions made in all the areas tracked
Most decisions did not involve community members (12 of 72)
Community members included banker, urgent care doctor, surgeons, pharmacist
Where involved, community members respected person’s preferences, occasionally with prompts by decision supporters

23. Did SDM place individuals at risk of abuse, neglect or exploitation?
Evaluation Finding: SDM adopters did not experience abuse, neglect or financial exploitation through use of SDM.
Pilot participants stated that the structure of SDM – (1) selecting people they can count on to help them make decisions and (2) having more than one supporter – reduces risk of abuse.

24. Did SDM make a difference for adopters?
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 decision supporters:
Confidence: “She is more confident in herself. She knows more what she wants. When I first met her she was sad due to past life experiences, and not motivated to do things she does now. SDM has helped motivate her. As things go on she is more confident that she is becoming more independent; she is more comfortable in herself. I see her blossoming.”
Esteem: “She’s happier, she has more self-esteem. People listen to her; before she was told what to do.”
Responsibility: “He’s learned all about his medication. He has a lot -- from fish oil to melatonin to anti-anxiety, thyroid, and mood stabilization. I used to do it. He is now taking a more active role with his doctors and psychiatrist.”

25. 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.

26. SDM impact on decision supporters
Evaluation Finding: SDM made a positive difference in decision supporters too, particularly for family members.
Family members felt more comfortable about not going to court for guardianship
Family members reported increased feelings of security knowing network supporters were committed in SDM Agreements.

27. SDM: A viable alternative to guardianship
Evaluation Finding: Supporters and project staff believe this intentional pilot demonstrates SDM is a viable alternative to guardianship.
SDM allows individuals to keep their decision-making rights
SDM has a positive impact on their self-respect
SDM gives people a voice in decisions about their lives
SDM can reduce society’s use of guardianship

28. Guardianship removed | SDM adopted
Mr. C, who is served by Nonotuck, is a 25-year-old pilot participant, diagnosed with autism and psychiatric disabilities.
Full guardianship since he was 18; also a Roger’s order
Adopted SDM and sought discharge of guardianship. Family, including mother/guardian, doctors and attorney supported discharge.
After a hearing, judge discharged guardianship and found: “The SDM Agreement provides to Mr. C. a sensible, reasonable and workable arrangement to assist him to make his own decisions about all aspects of his life."

29. SDM = “the right fit”
After court hearing, Mr. C. signs SDM agreement before notary public
Mr. C’s mother / former guardian calls SDM the right
fit. “We always wanted an alternative to guardianship, but there was not such an option at the time when he turned 18.”
His mother, father and sister are the supporters in his SDM network.
City clerk’s notarizes SDM Agreement after probate court hearing.

30. SDM Aligns Current Best Practices
Full community membership and integration
Person-centered service planning
Self-determination
Self-directed services
Self-advocacy
Self-advocacy: speaking up for oneself, expressing & communicating needs & goals.
Self-determination: the right to be provided opportunities, supports and authority to make choices and decisions about one’s life
Explore opportunities to make choices
Assume responsibility for one’s choices

31. Ways to gain decision experience
Always include the individual in the conversation
Ask for his/her opinion
Widen person’s experiences so he/she learns what they do not want as well as what they do want and what they are interested in
Talk about how you make decisions and what you considered, resources you used, if you were nervous about outcome, etc.
Incorporate SDM in the planning and development of ISPs, IEPs

32. Supported Decision-Making Matters
SDM helps people retain or regain legal rights
SDM increases self-esteem, self-worth
SDM encourages personal growth and new experiences
SDM reduces stigma!
SDM lets people shine and demonstrate they are capable contributing members of society

33. Supported Decision-Making together
“SDM means people are not making decisions alone. SDM is not about letting people sink or swim. … Let’s be in their corner, so they are not alone or making decisions in isolation. We can guide, correct, affirm decision making – just as we do for everyone else in our lives.”
Michael Kendrick, disability rights consultant

34. References and Resources
Affordable Care Act (ACA) Section 2402(a): Guidance for Implementing Standards for Person Centered Planning and Self-Direction in HCBS:
AAID-Arc Position Statement, Autonomy, Decision-Making Supports, and Guardianship:
Massachusetts SDM Pilot website:
National Core Indicators:
National Guardianship Association, Standards of Practice 2013 revision:
National Resource Center for Supported Decision Making:
Practical Tool for Lawyers: Steps in Supported Decision Making:
United Nations Convention on the Rights of Persons with Disabilities:

35. Contact us Center For Public Representation 22 Green Street
Northampton, MA 01060
Cathy Costanzo Michael Kendrick Anna Krieger