News

On September 18, 2023, CPR and a coalition of diverse advocates testified in favor of Senate Bill 109, which would establish a legal framework for Supported Decision-Making (SDM) in Massachusetts. To learn more about the bill and its companion, House Bill 1485, see the bill fact sheet.

My SDM team has supported me with my health care. . . SDM is important to me. . . In the end, my voice matters!

Amanda Jo Benoit, SDM Pilot Participant

As showcased in the testimony of Morgan Whitlatch, CPR’s Director of SDM Initiatives, at least 24 states and the District of Columbia have already passed statutes that formally recognize SDM agreements and/or require courts to consider SDM as a less-restrictive option before appointing a guardian.  Rhode Island, New Hampshire, and Maine are among these states, and we strongly urge Massachusetts to join them.  Michael Kendrick, CPR’s Senior Advisor on SDM Initiatives, focused his written testimony on CPR’s experience with piloting SDM with key partners, including Nonotuck Resource Associates and others, and the benefits we have seen the practice have in people’s lives.

CPR testified alongside other members of the Massachusetts Advocates for Supported Decision-Making (MASDM) Coalition, including people with disabilities and their supporters who talked about how SDM can transform lives.

” I have witnessed Supported Decision-Making, and I’ve seen the transformative power of it . . . It’s time for people with disabilities’ voices to be heard.”

Maggy Walto, Supporter in SDM Pilot

Two participants in the SDM pilots in Massachusetts prepared videos for the hearing to share their powerful stories.

Cory Carlotto, SDM Pilot Participant

James Cowell, SDM Pilot Participant

Please join us in supporting these important SDM bills, so that more Massachusetts residents can access and enforce this decision-making model.

On August 15, 2023, CPR submitted written comments to the Administration for Community Living (ACL) on its Notice of Proposed Rulemaking (NPRM) that seeks to modernize the implementing regulations of the Older Americans Act of 1965 (OAA).

In its comments, CPR applauded ACL for including provisions recognizing the importance of promoting less-restrictive alternatives to guardianship, including Supported Decision-Making (SDM).  CPR also offered suggestions for improving the regulations, including further limiting the circumstances under which area agencies on aging (AAAs) can provide legal assistance to petitioners seeking guardianship.  In addition, CPR recommended funding for initiatives that advance alternatives to guardianship through proactive outreach, training, legal assistance, and innovation projects aimed at older adults, including those that improve access to augmentative and alternative communication (AAC).  These comments built upon the recommendations made in the 2022 law review article on SDM and older adults, which CPR co-authored to inform the deliberations of the Fourth National Guardianship Summit.

CPR was joined in these comments by key partners, including CommunicationFIRST, the Disability Rights Education and Defense Fund, the National Disability Rights Network, and Quality Trust for Individuals with Disabilities.

The Center for Public Representation (CPR) is pleased to announce that it has been awarded a grant from the Massachusetts Developmental Disabilities Council (MDDC) to address gaps in the adoption of Supported Decision-Making (SDM) across the state.  Under this grant, CPR will focus on making SDM more available to linguistically, ethnically, and culturally diverse communities and intentionally integrating its Racial Equity Initiative into its SDM work.  CPR will be:

• Developing an SDM training module and toolkit specifically designed for and vetted by people with intellectual and/or developmental disabilities (IDD) and their families within underrepresented and underserved populations, including Black, Indigenous, and People of Color (BIPOC) communities.
• Involving self-advocates and family members as subject matter experts and trainers.
• Piloting a culturally and linguistically competent training via two distinct and complementary strategies, including joint county-based forums with judges who have expressed interest in advancing SDM with CPR, as well as targeted outreach to family support centers funded by the Department on Developmental Services (DDS) and Massachusetts Interagency Transition Teams that serve diverse communities.
• Supporting and facilitating regular reconvening of MDDC’s guardianship work group, known as the Guardianship Alternatives Innovation Network (GAIN), to ensure collaboration with and input from diverse community members, including self-advocates, family members, guardians, and local and state advocacy organizations.

CPR will also providing technical assistance to MDDC’s peer-run training program in its efforts to develop an SDM training program for people with IDD, utilizing CPR’s decades worth of experience in advancing alternatives to guardianship, SDM, and self-determination of people with disabilities.

For more information or any questions, please contact Morgan K. Whitlatch, CPR’s Director of Supported Decision-Making Initiatives, at mwhitlatch@cpr-ma.org.

Access pdf of Press Release

On March 30, 2023, the U.S. Senate Special Committee on Aging held a hearing on Guardianship and Alternatives: Protection and Empowerment.  In preparation for that hearing, the Committee sought public input, stories, and recommendations for reform related to guardianship, conservatorship, and other protective arrangements. CPR shared this request throughout the Protection and Advocacy network and the broader community interested in advancing alternatives to guardianship, including Supported Decision-Making.  The Committee ultimately received over 300 statements from 41 states and territories – all of which will be entered into the Congressional record of the hearing.

CPR submitted its own comment and recommendations for promoting Supported Decision-Making and dismantling pipelines to guardianship.  CPR also supported seven Massachusetts Supported Decision-Making pilot participants who wanted to share their stories and submitted their own statements to the Committee.  In addition, CPR led the effort of members of the Consortium of Constituents with Disabilities to submit a joint statement, further highlighting the need for reforms that go beyond improving judicial processes and that divert people from guardianship court systems and towards less-restrictive options.

REMINDER – Apply today!  The Center on Youth Voice, Youth Choice (CYVYC) is seeking applications for more State Teams to join our Community of Practice. If you are part of a team that wants to promote alternatives to guardianship for youth with intellectual or developmental disabilities in your state, read our FAQ and consider applying today. Applications are due by 8 PM ET/5 PT on February 24, 2023.

Want to Learn More?

UPDATE – Want to learn more?  – We are holding an optional informational session.  CYVYC staff and representatives from current State Teams and Youth Ambassadors will be there to answer your questions about the application and this project.  Please join us!

• When? –  Thursday, February 9, 2 – 3 PM ET.
• Where? – Zoom: https://communityinclusion.zoom.us/j/98790940949

The informational session webinar will have captioning and will be recorded and available for future viewing on the CYVYC website.

We are excited to announce that the Center on Youth Voice, Youth Choice (CYVYC) is now accepting the final round of applications from State Teams interested in joining its Community of Practice to promote alternatives to guardianship for youth with intellectual and developmental disabilities (IDD) in the United States.

CYVYC is a national resource center that was founded in Fall of 2020 through a five-year grant from the Administration on Community Living. CPR currently provides technical assistance to eight State Teams from Georgia, Indiana, Michigan, New Jersey, Oregon, South Carolina, Vermont, and Wisconsin.  Our Community of Practice fosters a rich dialogue around best practices, provides a framework of sustainable change, and centers the voice of youth leaders in its work.  We are seeking to recruit 3 additional State Teams to be part of our Community of Practice and to support Youth Ambassadors in those states to be leaders for change.

Are you part of a team that wants to promote alternatives to guardianship in your state?  If the answer is yes, apply today for CYVYC’s Community of Practice.  For more information, please check out this FAQ sheet with more information on CYVYC and the application process.

Applications due by 5:00 PM PST on February 24, 2023

If you have any questions about the application process or need any accommodations, please contact Morgan Whitlatch, mwhitlatch@cpr-ma.org, 202-596-6116.

CPR’s national leadership on Supported Decision-Making (SDM) is reflected in two new law review articles: “Supported Decision-Making: Lessons from Pilot Projects,” 72 Syracuse L. Rev. 99 (2022); and “Supported Decision-Making: Potential and Challenges for Older Persons,” 72 Syracuse L. Rev. 165 (2022).

The first article explains how SDM has transformed the lives of many individuals with disabilities who participated in SDM pilot programs, including those led by CPR in Massachusetts and Georgia, and it outlines the key principles necessary for successful replication.

The second article describes how SDM can be used to help older adults retain or regain their legal decision-making rights, and it includes recommendations for how to make SDM more accessible to that population.

Both articles were drafted to inform the deliberations at the Fourth National Guardianship Conference, which resulted in key recommendations for promoting SDM.

Please act TODAY in support of S.2848/H.4725, the MA Supported Decision-Making legislation.

Click here to send a letter to your Representative and Senator to ask them to urge their Chair of the House and Senate Ways & Means Committees to pass the SDM bills favorably out of the Committees!

The Massachusetts Advocates for Supported Decision-Making (MASDM) and countless advocates have been working hard to get these important bills passed.  We need your help!  Learn more about these bills and our Call to Action here.

I am 19 years old … Fighting cancer has been one of the hardest journeys of my life … A law would make it easier for people to have supporters with them anywhere they need them … I fully trust my team, but I want to make choices for my own life, and this law would protect that process.

– Jonathan Gardner, East Bridgewater, MA,

Boston Globe Op Ed (June 15, 2022)

Center on Youth Voice Youth Choice Expands its National Community of Practice of State Teams Advancing Alternatives to Guardianship

May 4, 2022

access pdf of Press Release

The Center on Youth Voice, Youth Choice (CYVYC) is delighted to announce its selection of five additional State Teams to join its national Community of Practice to promote alternatives to guardianship for youth with intellectual and developmental disabilities (I/DD).  Twenty-five teams from 21 States and territories applied.  The quality of the applications was excellent and revealed a deep interest in and commitment to Supported Decision-Making and its importance in the lives of transition-aged youth.

After an extensive selection process, CYVYC has chosen State Teams from Indiana, Michigan, New Jersey, Oregon, and South Carolina to join our existing Community of Practice. Each of the State Teams will be co-led by a youth with I/DD who is 14 to 26 years old.  The organizations co-leading the efforts of these newly selected State Teams include:

• Indiana Disability Rights and Self-Advocates of Indiana
• The Arc Michigan and the Michigan Developmental Disabilities Council
• Disability Rights New Jersey
• Oregon Council on Developmental Disabilities, FACT Oregon, and The Arc Oregon
• Able South Carolina

Congratulations to the newly selected State Teams from: Indiana, Michigan, New Jersey, Oregon, and South Carolina!

Under a five-year grant from the U.S. Administration on Community Living, CYVYC provides extensive technical assistance to State Teams to promote alternatives to guardianship, so that fewer youth with I/DD have legal guardians. The Community of Practice fosters a rich dialogue around best practices, supports long-term change, and centers the voices of youth leaders in its work. Community of Practice members work together to create lasting systemic reform in their states and support Youth Ambassadors to be leaders for change.

“We look forward to welcoming these new State Teams into the fold. At the core of our work is a deep commitment not only to expand this important work to more states, but to do so in a way that ensures the leadership of youth with I/DD is front and center.”

Cathy Costanzo, Executive Director of CPR, which facilitates the CYVYC Community of Practice

The CYVYC Community of Practice Selection Committee was comprised of a Youth Ambassador, a member of its Youth Advisory Committee, a representative from its National Coalition, and CYVYC staff, including representatives from the Institute for Community Inclusion, the Center for Public Representation (CPR), Self Advocates Becoming Empowered, and the Georgia Advocacy Office.  CYVYC plans to solicit applications for a third cohort of State Teams next year.

Contacts:

• Morgan Whitlatch, Director of Supported Decision-Making Initiatives, Center for Public Representation, mwhitlatch@cpr-ma.org, 202-596-6116
• Allison Hall, CYVYC Project Director, Institution for Community Inclusion, hall@umb.edu, 480-677-9677