NY Association on Independent Living
N
Y
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a
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D
i
r
e
c
t
o
r
,
S
D
M
N
Y
W
h
o
A
r
e
W
e
?
■
From 2016-March 31, 2021,
a consortium of
Hunter/CUNY, NY Alliance for Inclusion and
Innovation; Arc Westchester; Disability
Rights New York (DRNY)
■
F
unded by
NYS
Developmental
Disabilities
Planning
Council
(DDPC)
as 5-year pilot
project (largest in the
US,
second largest in
the world!)
■
From 2021-2022,f
unded for a final “bridge
year” by the Ford
Foundation, the FAR
Fund, and
the Taft
Foundation
T
h
e
g
o
a
l
s
o
f
t
h
e
D
D
P
C
g
r
a
n
t
•
Educate stakeholders about the emerging
practice of supported decision-making
(SDM)
•
Develop and pilot a process by which
people with I/DD can avoid guardianship
or, if already subject to guardianship, have
their rights restored
•
Develop an evidentiary base for Supported
Decision-Making Agreement (SDMA)
legislation
•
Create plan for sustainability
R
e
s
u
l
t
s
o
f
t
h
e
p
i
l
o
t
•
SDM now widely recognized, including by the
courts, AAIDD, ARC US (and NY), National Council
on Disability (NCD), American Bar Association,
Administration for Community Living (ACL), Social
Security Administration, National Guardianship
Association, etc. as a “less restrictive alternative to
guardianship”
•
SDM facilitation process piloted, refined, evaluated,
with almost 100 Decision-Makers with SDMAs and
many more in the pipeline
•
2021-22: OPWDD introduces SDMA legislation
based on SDMNY “Principles”: signed 7/26/22
•
SDMNY plan for sustainability incorporated into
OPWDD grant
2
0
2
2
:
O
P
W
D
D
I
m
p
l
e
m
e
n
t
a
t
i
o
n
g
r
a
n
t
SDMNY funded for 3 years to design
and pilot a facilitation service delivery
system that could be scaled up to serve
everyone in NY who wants SDM
facilitation
W
h
a
t
I
L
C
s
n
e
e
d
t
o
k
n
o
w
•
What is Supported Decision-Making?
•
What is the SDMNY facilitation
process?
•
What does the new SDMA legislation
do?
•
What are the
implications/opportunities for ILCs?
W
h
a
t
I
s
S
u
p
p
o
r
t
e
d
D
e
c
i
s
i
o
n
-
M
a
k
i
n
g
?
■
Supported decision-making (SDM)
is
“a
series of relationships, practices,
arrangements and agreements of more
or less formality and intensity designed
to assist an individual with
a
disability to
make and communicate to others
decisions
about the
individual’s
life.”
–
Robert
Dinerstein
(2012)
S
u
p
p
o
r
t
e
d
D
e
c
i
s
i
o
n
-
M
a
k
i
n
g
C
a
n
T
a
k
e
M
a
n
y
F
o
r
m
s
■
Completely
informal
(so
it
is
often
invisible)
■
Informal but with
a
n oral or written
Supported
Decision-
Making
Agreement
(SDMA)
■
Formalized
through
a
facilitated
process
that
results
in
a
written and signed
SDMA (SDMNY
model)
■
Legalized
by
statute
, with third parties (health care
providers, financial institutions, landlords, etc.)
required to accept decision made by persons with
SDMAs
W
h
e
r
e
D
o
e
s
S
D
M
C
o
m
e
F
r
o
m
?
■
Our
common
experience
of
how
everyone
makes
decisions
■
The
human right of every person
to
make
their
own
decisions
regardless
of
disability
E
v
e
r
y
o
n
e
U
s
e
s
S
u
p
p
o
r
t
s
:
N
o
r
m
a
l
i
z
a
t
i
o
n
■
When
you
make
an
important
decision,
how do you do it? Consulting friends
and/or family? Using experts (lawyers,
accountants, etc.)? Doing and utilizing
research?
■
People with I/DD may just need more or
different
kinds of
support
S
t
e
p
s
i
n
D
e
c
i
s
i
o
n
-
M
a
k
i
n
g
/
K
i
n
d
s
o
f
S
u
p
p
o
r
t
■
Gathering
necessary
information
■
Understanding
that
information
■
Identifying
possibilities
and
alternatives
■
Considering
consequences
■
Weighing
the
choices
■
Communicating
the
decision
to
others
■
Implementing
the
decision
H
u
m
a
n
R
i
g
h
t
s
:
U
N
C
o
n
v
e
n
t
i
o
n
o
n
t
h
e
R
i
g
h
t
s
o
f
P
e
r
s
o
n
s
w
i
t
h
D
i
s
a
b
i
l
i
t
i
e
s
(
C
R
P
D
)
A
r
t
i
c
l
e
1
2
1.
States
Parties
reaffirm
that
persons
with
disabilities
have
the
right
to recognition
everywhere as persons
before
the
law.
2.
States Parties
shall recognize
that
persons
with
disabilities
enjoy legal
capacity
on an equal basis
with
others
in
all
aspects
of
life.
3.
S
t
a
t
e
s
P
a
r
t
i
e
s
s
h
a
l
l
t
a
k
e
a
p
p
r
o
p
r
i
a
t
e
m
e
a
s
u
r
e
s
t
o
p
r
o
v
i
d
e
a
c
c
e
s
s
b
y
p
e
r
s
o
n
s
w
i
t
h
d
i
s
a
b
i
l
i
t
i
e
s
t
o
t
h
e
s
u
p
p
o
r
t
t
h
e
y
m
a
y
r
e
q
u
i
r
e
i
n
e
x
e
r
c
i
s
i
n
g
t
h
e
i
r
l
e
g
a
l
c
a
p
a
c
i
t
y
.
S
D
M
N
Y
F
a
c
i
l
i
t
a
t
i
o
n
•
The goal: to enable a person with I/DD to
make their own decisions with the support
of trusted persons in their lives
•
How we do it: a three phase facilitation
process in which a trained facilitator,
backed by an experienced mentor works
with the person with I/DD (the Decision-
Maker) and their chosen supporters over
an average of 14 meetings, culminating in
a signed SDMA
M
a
i
n
c
o
m
p
o
n
e
n
t
s
o
f
t
h
e
f
a
c
i
l
i
t
a
t
i
o
n
p
r
o
c
e
s
s
•
“
Unpacking” how decisions are made; identifying
the seven steps; “mapping” decisions that the
Decision-Maker is and may be engaged in
•
Facilitating the Decision-Maker in identifying the
domains in which they want support, the kinds of
support they want, and the persons from whom
they want to receive that support
•
Fostering intrinsic motivation through competence,
autonomy and relationship
•
Educating supporters on SDM; unpacking and
mapping, “re-positioning” from previous
relationships; exploring “dignity of risk”; building
capacity for long term commitment to support
P
h
a
s
e
1
:
D
M
F
a
c
i
l
i
t
a
t
i
o
n
Working
with
the DM and utilizing “mapping” and
the
SDMA
worksheet
to
ascertain:
■
how
the
DM
receives
information; using
“mapping” to see
how decisions are
made; the kinds
of decisions
they
currently
make
and
want
to
make
in
the
future
(e.g.,
health,
money,
work, education,
etc.)
■
who helps
them
in
making
decisions and who
they
would
like
to support them
in
the future (e.g.,
one person per area
vs.
circle
of
support)
■
what
kinds
of
support
they
want
to
receive
(gathering
information,
communicating
decisions, helping weigh
alternatives,
etc.)
■
how
the
DM wants
to
use
their Supporter(s)
when
a
decision
is
to
be
made
P
h
a
s
e
2
:
S
u
p
p
o
r
t
e
r
F
a
c
i
l
i
t
a
t
i
o
n
■
Working with the Decision-Maker’s chosen
Supporters to
educate
them
about
SDM
including unpacking and mapping their own
decisions
■
“
R
eposition
ing
”
them
from
their
existing
roles
(such
as parents who
currently
make
decisions
for
the
D
ecision-
M
aker
)
■
G
ain
ing
their
commitment
to
that
role
,
including the “dignity of risk”
and
to
honoring
the
primacy of
the
D
ecision-
M
aker
in
their
decision-making
P
h
a
s
e
3
:
T
e
a
m
F
a
c
i
l
i
t
a
t
i
o
n
■
Working
with
the
D
ecision-Maker
and
Supporters
■
Utilizing
the SDMA
”Big Four” chart
to
negotiate
the
supported
decision-making agreement
(SDMA)
■
Modeling
what
that
process
should
look
like,
with
the
D
ecision-
M
aker
at
the
center
■
From the first
draft of
the SDMA,
incorporating all
changes
in
a final
agreement, which all parties
understand and
to
which
they
give
their
assent
P
r
o
d
u
c
t
/
R
e
s
u
l
t
s
o
f
F
a
c
i
l
i
t
a
t
i
o
n
•
A signed contract–the Supported Decision-Making Agreement
(SDMA)– that sets out the areas in which the Decision-Maker
wants support, the kinds of support requested and the persons
from whom that support is desired
•
A flexible (modifiable) document that describes the process the
Decision-maker will use in making decisions and utilizing
support throughout their life
•
Enhanced self-determination, confidence and autonomy for the
Decision-Maker
•
Changed relationships between the Decision-Maker and their
supporters, replacing paternalism and surrogate decision-
making with recognition and acknowledgement of the
Decision-Maker as an adult with the ability to make their own
decisions with support
L
e
g
a
l
E
f
f
e
c
t
o
f
S
D
M
A
s
■
Without legislation, t
hird
parties
(health care
professionals, bankers,
etc.)
may
accept,
but
decisions made with SDMAs
are
currently
not
legally
binding on private
third
parties;
■
SDMA
legislation
, requiring mandatory acceptance
(as with Powers of Attorney)
is
currently
in place in
15
states:
Texas,
Delaware,
Wisconsin, Alaska,
Nevada,
Indiana,
North Dakota, Rhode
Island,
New
Hampshire,
Washington, Oregon, Illinois, Virginia,
Louisiana,
Colorado
,
Washington.
D.C.
and, as of
July 26, 2022, New York. In return for acceptance,
third parties receive immunity from civil and criminal
liability.
N
e
w
Y
o
r
k
’
s
S
D
M
A
l
a
w
,
A
r
t
i
c
l
e
8
2
o
f
t
h
e
M
e
n
t
a
l
H
y
g
i
e
n
e
L
a
w
•
Acknowledges SDM, both formal and informal, as a
valid practice by which persons with disabilities can
make decisions with support, and as a practice that
may be a “less restrictive alternative to
guardianship”
•
Describes who can make an SDMA, who can be a
supporter, what the supporter can and can’t do,
how to change or terminate an SDMA, and
necessary formalities.
•
Provides for legislative recognition of decisions
made with SDMAs that have been made through a
facilitation process set forth in regulations to be
written by OPWDD
W
h
a
t
t
h
e
n
e
w
l
a
w
d
o
e
s
N
O
T
d
o
•
Affect families’ and others ability to petition for
guardianship
•
Require anyone to do SDM or make an SDMA,
including as a requirement for receiving services
•
Immediately “legalize” decisions made pursuant to
SDMAs
•
Extend legislative recognition to decisions made
with SDMAs to groups other than persons with
I/DD (older persons with cognitive decline,;
persons with psychosocial disabilities; persons with
traumatic brain injuries [TBIs])but encourages
government and civil society to develop
appropriate supports so that they may be covered
by regulations in the future
T
h
e
S
D
M
N
Y
f
a
c
i
l
i
t
a
t
i
o
n
s
e
r
v
i
c
e
d
e
l
i
v
e
r
y
m
o
d
e
l
•
Facilitators will come from, and be paid from a
variety of sources, primarily provider agencies, but
also the private bar, educational institutions with
graduate professional (MSW, OTA, etc.) programs
that provide academic (fieldwork) credit, and pure
volunteers (from faith-based organizations, etc.)
•
To ensure consistency, quality, accountability and
transparency, a central entity, the Facilitation
Training, Resource and Education Center
(FTREC) will provide all facilitator training and
facilitation materials and mentor all facilitators
(whatever the source) by experienced facilitators
employed and supervised by the FTREC
W
h
e
r
e
w
i
l
l
D
e
c
i
s
i
o
n
-
M
a
k
e
r
s
c
o
m
e
f
r
o
m
?
•
We expect families to be incentivized both by
widening knowledge and acceptance of SDM and
especially by passage of the SDMA legislation
•
In the pilot, from partner agencies, inclusive
education (“Think Colleges”) court referrals and
inquiries to SDMNY
•
From the private bar who will be able to offer SDM
facilitation leading to a legislatively recognized SDMA
as an alternative to guardianship where appropriate,
enabling the person with I/DD to retain their legal and
civil rights
P
o
t
e
n
t
i
a
l
i
n
v
o
l
v
e
m
e
n
t
f
o
r
I
L
C
s
•
Educating the community about SDM
as an alternative to guardianship?
•
Referring potential Decision-Makers?
•
Offering SDM facilitation as a service?
•
And?
•
Let’s continue the conversation
M
e
a
n
w
h
i
l
e
We welcome your thoughts,
suggestions, and collaboration to
develop the model, and to provide
people with I/DD and their families the
tools to enable them to be more self-
determined, autonomous and live their
best, most inclusive lives.
For more information, check out our
website
https://sdmny.org
Supported Decision-Making (SDM) empowers individuals with disabilities to make their own choices with assistance, offering an alternative to guardianship. The SDMNY initiative, funded by various organizations, aims to educate stakeholders, develop SDM processes, restore rights, and create sustainable practices. Results show widespread recognition of SDM's effectiveness, leading to legislative developments and future implementation plans. ILCs play a crucial role in understanding and implementing SDM practices to support individuals in leading self-determined lives.
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Presentation Transcript
NY Association on Independent Living December 15, 2022 Kristin Booth Glen Director, SDMNY Joan Cornachio Associate Director, SDMNY
Who Are We? From 2016-March 31, 2021,a consortium of Hunter/CUNY, NY Alliance for Inclusion and Innovation; Arc Westchester; Disability Rights New York (DRNY) Funded by NYS Developmental Disabilities Planning Council (DDPC) as 5-year pilot project (largest in the US, second largest in the world!) From 2021-2022,funded for a final bridge year by the Ford Foundation, the FAR Fund, and the Taft Foundation
The goals of the DDPC grant Educate stakeholders about the emerging practice of supported decision-making (SDM) Develop and pilot a process by which people with I/DD can avoid guardianship or, if already subject to guardianship, have their rights restored Develop an evidentiary base for Supported Decision-Making Agreement (SDMA) legislation Create plan for sustainability
Results of the pilot SDM now widely recognized, including by the courts, AAIDD, ARC US (and NY), National Council on Disability (NCD), American Bar Association, Administration for Community Living (ACL), Social Security Administration, National Guardianship Association, etc. as a less restrictive alternative to guardianship SDM facilitation process piloted, refined, evaluated, with almost 100 Decision-Makers with SDMAs and many more in the pipeline 2021-22: OPWDD introduces SDMA legislation based on SDMNY Principles : signed 7/26/22 SDMNY plan for sustainability incorporated into OPWDD grant
2022: OPWDD Implementation grant SDMNY funded for 3 years to design and pilot a facilitation service delivery system that could be scaled up to serve everyone in NY who wants SDM facilitation
What ILCs need to know What is Supported Decision-Making? What is the SDMNY facilitation process? What does the new SDMA legislation do? What are the implications/opportunities for ILCs?
What Is Supported Decision-Making? Supported decision-making (SDM) is a series of relationships, practices, arrangements and agreements of more or less formality and intensity designed to assist an individual with a disability to make and communicate to others decisions about the individual s life. Robert Dinerstein (2012)
Supported Decision-Making Can Take Many Forms Completely informal (so it is often invisible) Informal but with an oral or written Supported Decision- Making Agreement (SDMA) Formalized through a facilitated process that results in a written and signed SDMA (SDMNY model) Legalized by statute, with third parties (health care providers, financial institutions, landlords, etc.) required to accept decision made by persons with SDMAs
Where Does SDM Come From? Our common experience of how everyone makes decisions The human right of every person to make their own decisions regardless of disability
Everyone Uses Supports: Normalization When you make an important decision, how do you do it? Consulting friends and/or family? Using experts (lawyers, accountants, etc.)? Doing and utilizing research? People with I/DD may just need more or different kinds of support
Steps in Decision- Making/Kinds of Support Gathering necessary information Understanding that information Identifying possibilities and alternatives Considering consequences Weighing the choices Communicating the decision to others Implementing the decision
Human Rights:UN Convention on the Rights of Persons with Disabilities (CRPD) Article 12 States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law. States Parties shall recognize that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life. States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity. 1. 2. 3.
SDMNY Facilitation The goal: to enable a person with I/DD to make their own decisions with the support of trusted persons in their lives How we do it: a three phase facilitation process in which a trained facilitator, backed by an experienced mentor works with the person with I/DD (the Decision- Maker) and their chosen supporters over an average of 14 meetings, culminating in a signed SDMA
Main components of the facilitation process Unpacking how decisions are made; identifying the seven steps; mapping decisions that the Decision-Maker is and may be engaged in Facilitating the Decision-Maker in identifying the domains in which they want support, the kinds of support they want, and the persons from whom they want to receive that support Fostering intrinsic motivation through competence, autonomy and relationship Educating supporters on SDM; unpacking and mapping, re-positioning from previous relationships; exploring dignity of risk ; building capacity for long term commitment to support
Phase 1: DM Facilitation Working with the DM and utilizing mapping and the SDMA worksheet to ascertain: how the DM receives information; using mapping to see how decisions are made; the kinds of decisions they currently make and want to make in the future (e.g., health, money, work, education, etc.) who helps them in making decisions and who they would like to support them in the future (e.g., one person per area vs. circle of support) what kinds of support they want to receive (gathering information, communicating decisions, helping weigh alternatives, etc.) how the DM wants to use their Supporter(s) when a decision is to be made
Phase 2: Supporter Facilitation Working with the Decision-Maker s chosen Supporters to educate them about SDM including unpacking and mapping their own decisions Repositioning them from their existing roles (such as parents who currently make decisions for the Decision-Maker) Gaining their commitment to that role, including the dignity of risk and to honoring the primacy of the Decision- Maker in their decision-making
Phase 3: Team Facilitation Working with the Decision-Maker and Supporters Utilizing the SDMA BigFour chart to negotiate the supported decision-making (SDMA) agreement Modeling what that process should look like, with the Decision-Maker at the center From the first draft of the SDMA, incorporating all changes in a final agreement, which all parties understand and to which they give their assent
Product/Results of Facilitation A signed contract the Supported Decision-Making Agreement (SDMA) that sets out the areas in which the Decision-Maker wants support, the kinds of support requested and the persons from whom that support is desired A flexible (modifiable) document that describes the process the Decision-maker will use in making decisions and utilizing support throughout their life Enhanced self-determination, confidence and autonomy for the Decision-Maker Changed relationships between the Decision-Maker and their supporters, replacing paternalism and surrogate decision- making with recognition and acknowledgement of the Decision-Maker as an adult with the ability to make their own decisions with support
Legal Effect of SDMAs Without legislation, third parties (health care professionals, bankers, etc.) may accept, but decisions made with SDMAs are currently not legally binding on private third parties; SDMA legislation, requiring mandatory acceptance (as with Powers of Attorney) is currently in place in 15 states: Texas, Delaware, Wisconsin, Alaska, Nevada, Indiana, North Dakota, Rhode Island, New Hampshire, Washington, Oregon, Illinois, Virginia, Louisiana, Colorado, Washington. D.C. and, as of July 26, 2022, New York. In return for acceptance, third parties receive immunity from civil and criminal liability.
New Yorks SDMA law, Article 82 of the Mental Hygiene Law Acknowledges SDM, both formal and informal, as a valid practice by which persons with disabilities can make decisions with support, and as a practice that may be a less restrictive alternative to guardianship Describes who can make an SDMA, who can be a supporter, what the supporter can and can t do, how to change or terminate an SDMA, and necessary formalities. Provides for legislative recognition of decisions made with SDMAs that have been made through a facilitation process set forth in regulations to be written by OPWDD
What the new law does NOT do Affect families and others ability to petition for guardianship Require anyone to do SDM or make an SDMA, including as a requirement for receiving services Immediately legalize decisions made pursuant to SDMAs Extend legislative recognition to decisions made with SDMAs to groups other than persons with I/DD (older persons with cognitive decline,; persons with psychosocial disabilities; persons with traumatic brain injuries [TBIs])but encourages government and civil society to develop appropriate supports so that they may be covered by regulations in the future
The SDMNY facilitation service delivery model Facilitators will come from, and be paid from a variety of sources, primarily provider agencies, but also the private bar, educational institutions with graduate professional (MSW, OTA, etc.) programs that provide academic (fieldwork) credit, and pure volunteers (from faith-based organizations, etc.) To ensure consistency, quality, accountability and transparency, a central entity, the Facilitation Training, Resource and Education Center (FTREC) will provide all facilitator training and facilitation materials and mentor all facilitators (whatever the source) by experienced facilitators employed and supervised by the FTREC
Where will Decision-Makers come from? We expect families to be incentivized both by widening knowledge and acceptance of SDM and especially by passage of the SDMA legislation In the pilot, from partner agencies, inclusive education ( Think Colleges ) court referrals and inquiries to SDMNY From the private bar who will be able to offer SDM facilitation leading to a legislatively recognized SDMA as an alternative to guardianship where appropriate, enabling the person with I/DD to retain their legal and civil rights
Potential involvement for ILCs Educating the community about SDM as an alternative to guardianship? Referring potential Decision-Makers? Offering SDM facilitation as a service? And? Let s continue the conversation
Meanwhile We welcome your thoughts, suggestions, and collaboration to develop the model, and to provide people with I/DD and their families the tools to enable them to be more self- determined, autonomous and live their best, most inclusive lives. For more information, check out our website https://sdmny.org
