SDM SYMPOSIUM 6 .2019

Margaret Cardoza, Self-Advocate

Nell Brimmer, Esq., Managing Attorney, Disability Rights

Maine

SupportedDecision-Makingin Maine

Agenda M A K I N G S D M A R E A L I T Y I NM A I N E - G R A S S R O O T SA D V O C A C Y A N DD I S A B I L I T Y R I G H T S L A W

History

Impact

Challenges

Work To Do

www

.supportm

ydecision

.org

Who we areMARGARET CARDOZA SELF ADVOCATE

MANAGING ATTORNEY

DISABILITY RIGHTS MAINE

NELL BRIMMER

History of Self Advocacy in Maine

Pineland : Maine 's institution

closed by a class action lawsuit

in 1996

As a result , people discovering their

world for the f irst t ime

de-programming

fighting institutional thinking

The Maine Self-Advocacy

Movement

PAIGE BARTON , CREATOR OF SPEAKING UP

FOR US (SUFU )

Paige received independent living services. Today, SUFU is

Maine's largest self-advocacy organization

PAIGE LEFT HER POSITION WITH A SERVICE PROVIDER TO

WORK IN THE STATE 'S DHHS

Hired to do self-advocacy work on behalf of DHHS

MARGARET TOOK OVER PAIGE 'S POSITION IN 1997 AT THE

SERVICE PROVIDER

Margaret's WorkTHE WORK OF SELF-ADVOCACY

ACCESSIBILITY

ACCOMODATIONS

Transportation in Maine - advocating for commuter train 

COMMUNITY INVOLVEMENT

Difficult working relationship with guardians

Confronted with guardians and the line was drawn; guardian

authority was law

ALWAYS AN IDENTIFIED PROBLEM WITH

GUARDIANSHIP

Introduction to SDM - Self-Advocacy

How do we bring this

to Maine?!

MARGARET SEES

JENNY HATCH

ON TV -

REACHES OUT

TO JONATHAN

MARTINIS

Started SDM trainings

as Self-Advocate

Coordinator

RESEARCH AND

WORK TO

DESIGN SDM

TRAININGS FOR

SELF

ADVOCATES

Discussion of SDM as an

alternative to guardianship

SELF

ADVOCATES

AND DISABILITY

RIGHTS MAINE

ATTORNEYS

VISIT PROBATE

JUDGE

She knew SDM was

the solution

MARGARET

CONCLUDED

WORK AS

RESULT OF

MEETING HER

MISSION

www..supportmydecision.org

Introduction to SDM: Disability

Rights Maine

Committee Formed:

Seeking to identify

alternatives to

guardianship

DRM ATTORNEY

RETREAT

SUMMER 2013

Representation of

Clients in Probate

Court to Terminate

Guardianships

RESTORATION

OF RIGHTS

Self Advocacy and DD

Network

COLLABORATION

Formed in 2015

SUPPORTED

DECISION-

MAKING

COALTION

www.supportmydecision.org

SUPPORTEDDECISIONMAKING!!!  IT'STHE FUTURE!!!MARCH 2015 EMAIL FROMDRM'S EXECUTIVE DIRECTOR

Sent to prospective partners, announcing

DRM is applying for NRC-SDM Grant and

seeking participants to form a coalition

www.supportmydecision.org

Timeline of SDM Work in Maine

Maine Supported

Decision-Making

Coalition Formed to

Bring SDM to Maine

DRM receives seed

grant from the

National Resource

Center on

Supported Decision-

Making (NRC-SDM)

2015

OCFS includes SDM

in its Guide to

Transition Services

in Maine

supportmydecision.

org launched

2016

Maine Probate and Trust

Law Advisory

Committee (PATLAC)

recommends inclusion

of SDM in the Probate

Code

DRM receives 2nd seed

grant from the National

Resource Center on

Supported Decision

Making (NRC-SDM)

2017

Maine passes legislation

to include SDM in

Probate Code

Knox County Probate

Court terminates

guardianship in favor of

SDM

OADS awarded ACL

grant to enhance APS

system by incorporating

SDM

2018

www.supportmydecision.org

Key Partnerships

Maine was a 2 time grant recipient

Delegation from Maine went in September 2018 to

learn from their work on facilitation 

National Disability Rights Network Annual

Conferences, Online Trainings, Recent Developments

NATIONAL RESOURCE CENTER FOR

SUPPORTED DECISION-MAKING (NRC-SDM )

SUPPORTED DECISION-MAKING NEW YORK

(SDMNY )

TRAININGS AND OUTREACH

Trainings

Individuals who receive services

Transition-age young adults and

their families

Judiciary/members of the

bar/Probate Court staff

State Actors: Office of Aging and

Disability Services/Adult Protective

Services (act as public guardian in

Maine)

Case Managers

Parent Groups

2016 2017 2018 2019

1,000

750

500

250

0

Attorneys and Advocates

providing materials at

meetings to individuals

and their teams

PERSON CENTERED

PLANNING (PCP )

MEETINGS

Continuation of

partnership and

community building

COLLABORATION AND

CONNECTION

Creation of a User's Guide -

ability to provide materials

that can be used to

facilitate the process of

SDM

SDM WORKBOOK  

The Work of OutreachBUILDING CAPACITY IN MAINE

Supported Decision-Making

A USER 'S GUIDE FOR PEOPLE

WITH DISABILITIES AND THEIR

SUPPORTERS

Approx 6,000 printed

MAINE DEVELOPMENTAL DISABILITIES COUNCIL ,

STANDING UP FOR US (SUFU ) , UM CENTER FOR

COMMUNITY INCLUSION AND DISABILITY

STUDIES , MAINE PARENT FEDERATION

Maine signs the new

Probate Code into law

March 2018 with a

promulgation date of July

2019

SDM BECOMING

LAW 2018

Maine's Probate Code has

not been updated since

the 1970's

RADICAL

DEPARTURE  

Uniform Guardianship,

Conservatorship, and

Other Protective

Arrangements Act

MAINE ADOPTS

THE UGCOPAA

of people receiving state

services

MAINE HAS TWICE

THE NATIONAL

AVERAGE OF

GUARDIANSHIPS

A desire for SDM to be a

protective device with

court oversight

GUARDIAN

CONCERN

Substantive changes

proposed

CLEAN UP BILL

2019 LEGISLATIVE

SESSION

Considerations

Creating supports naturally is preferable to calling

them "natural supports"

Maine is a large, rural state with long winters

Am I making the final decision? 

MAKING CONNECTIONS AND AND

CREATING SUPPORTS

ISOLATION

HOW TO ENSURE THE DECISION-MAKER 'S

DECISIONS ARE HONORED

Ensuring DecisionsAre Honored W H E N S E E K I N G O U T H E L P F O R AD E C I S I O N , A L L P E O P L E W A N T T H E S EQ U A L I T I E S I N A S U P P O R T E R S :

Be UNBIASED , NON-JUDGMENTAL , and

NOT PERSUASIVE

Provide access to information

Provide ACCOMMODATIONS to

communicate and understand each

other

is the RELATIONSHIP balanced or is one

person paid? is the relationship mutual

or are there ulterior motives?