Calling All Massachusetts SDM Advocates! – Time is Running Out!

The Time is Now!

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)

Press Release – More State Teams Join National Community of Practice on Alternatives to Guardianship for Youth

Center on Youth Voice Youth Choice

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:

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

Call for Applications! Center on Youth Voice, Youth Choice

Center for Youth Voice, Youth Choice

We are excited to announce that the Center on Youth Voice, Youth Choice (CYVYC) is now accepting applications from teams interested in participating in our 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 the Fall of 2020 through a grant from the Administration on Community Living. During the course of this five-year grant, we are supporting State Teams to promote alternatives to guardianship, so that fewer youth with IDD have legal guardians. We are currently seeking to recruit 4 new 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 is promoting alternatives to guardianship in your state? If the answer is yes, apply today for CYVYC’s Community of Practice. Our Community of Practice fosters a rich dialogue around best practices, provides a framework for sustainable change, and centers the voices of youth leaders in this work. Community of Practice members work in partnership with us to create lasting systemic change in their states.

CLOSED – This application period closed on February 10, 2022.   

STAY TUNED! – The next Call for Applications will be announced in early 2023.

If you have any questions, please contact Morgan Whitlatch, mwhitlatch@cpr-ma.org, 202-596-6116.

Coalition Testifies at Hearing on SDM Legislation in Massachusetts

Group of five people testifying remotely at the virtual hearing held by the Massachusetts Legislature on the SDM bills
(Left to right, bottom row) Morgan Whitlatch (CPR), Ellen Taverna (The Arc of Massachusetts), Paul Lanzikos (not pictured) (Dignity Alliance Massachusetts). ()Left to right, top row) Anna Krieger (Massachusetts Developmental Disabilities Council), Jennifer Honig (Massachusetts Association for Mental Health)

On November 22, 2021, CPR and a coalition of diverse advocates testified in favor of Supported Decision-Making legislation in MassachusettsS.124 / H.272. To learn more about the bill see the bill fact sheet and our page on the legislation.

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

Thank you to Representative Paul Tucker and Senator Joan Lovely for your testimony and your leadership on these critical bills.

Group of three people testifying remotely at the virtual hearing held by the Massachusetts Legislature on the SDM bills
(Left to right) Sandra Heller (Massachusetts Developmental Disabilities Council and Supporter in CPR SDM Pilot), Nancy Gardner (Supporter), Jonathan Gardner (Decision-Maker)

“SDM makes me feel involved with my life and choosing how and when I will be getting my treatments. I can let my body and voice guide me with the support of my Mom and Dad. I don’t have many choices when it comes to have Cancer, but at least I can control when and how we do it.” – Jonathan Gardner, 18 years old.

woman testifying remotely at the virtual hearing held by the Massachusetts Legislature on the SDM bills
Malia Windrow-Carlotto (Supporter in CPR/Nonotuck Pilot)

“Cory has flourished since he started using Supported Decision-Making. . . . He is currently living in his own apartment, has traveled the country with friends, and is now working full-time . . . I could not be prouder.”– Malia Windrow-Carlotto, Supporter in SDM Pilot Project (CPR/Nonotuck)

Speakers on MASDM Panels at Hearing

Written Testimony of Other SDM Pilot Participants

 In the past year, I have gone through some major health changes . . ., and I leaned on my SDM Team to help me understand what was happening to me and what the doctors were saying.  [They] helped me through each step.Amanda Benoit, SDM Pilot Participant (written testimony)

. . . I was the first person in Massachusetts to have my guardianship relinquished for the Supported Decision-Making Model.  This moment was very special, because I felt my own freedom for the first time.”Cory Carlotto, SDM Pilot Participant (written testimony)

 My SDM Team has helped me so much in achieving my dreams . . . I was happy to advocate for SDM, because it helps people with disabilities keep their voice and make the final decisions in things with support from a team, if needed.Jimmy Cowell, SDM Pilot Participant (written testimony)

SDM brings people together.  It brings families closer.  Service providers are more involved, more aware of the participant and closer to the family.  But most importantly, the participants grow, have control of their lives and experience love, pride, joy and happiness.

George Fleischner, Nonotuck Resources Associates (written testimony)

My SDM Team helps me grow in my skills, such as with my banking, making health decisions at doctors and dentist appointments, and buying healthy food choices.  My SDM Team is very important to me, and I trust them.

Johnathan Jenkins, SDM Pilot Participant (written testimony)

Please vote yes so that Supported Decision-Making agreements can be put in place for more people to make their own decisions with help just like me.

Craig Kinney, SDM Pilot Participant (written testimony)

Amanda knows who is in her life and who she trusts. She is also capable of making decisions . . . Amanda [gets] moral support from her SDM Team, one-on-one discussions, conversations going over the pros and cons, and getting info on the big picture of the decision.

Sandy Dear-Robinson, Supporter in SDM Pilot (written testimony)

If you support the SDM bill in Massachusetts, see how to make your voice heard!

Advocacy Alert! CPR joins ACLU in filing Amicus Brief in Britney Spears’ conservatorship case

Advocacy Alert! The Center for Public Representation joined the American Civil Liberties Union and a diverse coalition of Supported Decision-Making advocates in filing a request to file an amicus brief in Britney Spears’ conservatorship case.

The amici argue that Ms. Spears the has the right to choose her own attorney, as she has expressed she would like to do. Amici urge the court to provide Ms. Spears with any tools needed to do select her own lawyer — including Supported Decision-Making if she wishes. The amicus brief was filed July 12, 2021 in Los Angeles Superior Court.

Supported decision-making is another option that Ms. Spears may wish to use in selecting her own attorney. With supported decision-making, a person can use supports – including working with trusted advisors, mentors, friends, or professionals, to help them understand, consider, and make their own choices.

BRIEF OF AMICI CURIAE, p. 9, line 23-26

Amici urged the court to take steps to ensure that Ms. Spears can consider and explore the opportunity to learn about and use supported decision-making to select her own attorney, if she chooses.

Supported decision-making is also an example of a “reasonable modification” that a public entity, like this Court, may be required to provide or facilitate under the Americans with Disabilities Act and/or the Rehabilitation Act, in order to ensure that people with disabilities have equal access to the Court’s proceedings and processes.

BRIEF OF AMICI CURIAE, p. 11, line 11-14

The coalition of organizations filing the amicus brief are a broad and diverse group of disability justice, self-advocacy organizations, elder justice, and civil rights organizations.  The coalition members all work to advance Supported Decision-Making as a tool that allows people to retain their rights and exercise choice.

Read the amicus brief here.

Read the ACLU’s statement about the brief here.

For more background, read our statement on Britney Spears’ conservatorship case.

Coalition of organizations filing the amicus brief:

AIDS Legal Referral Panel

American Civil Liberties Union

The Arc of the United States

Autistic Self-Advocacy Network

Burton Blatt Institute

California Advocates for Nursing Home Reform

California Alliance for Retired Americans

Cardozo Bet Tzedek Legal Services

Center for Public Representation

Choice in Aging

Civil Rights Education and Enforcement Center

Coalition for Elderly and Disability Rights

The Coelho Center for Disability Law, Policy and Innovation

Communication FIRST

Disability Rights California

Disability Rights Education & Defense Fund

Disability Rights Legal Center

Disability Voices United

Justice in Aging

Legal Aid at Work

Mental Health Advocacy Services

National Resource Center for Supported Decision-Making

Quality Trust for Individuals with Disabilities

TASH

Interested to learn more about Supported Decision-Making and how it can work?

decorative image of circles and lines

National media coverage of Supported Decision-Making!

With the national attention on guardianship reform sparked by Britney Spears experience living under a conservatorship, Supported Decision-Making has been in the national news.

Check out some of this recent coverage featuring Supported Decision-Making, including stories from Center for Public Representation’s work and pilots!
Man standing against brick wall
Jimmy C., decision-maker from CPR/Nonotuck pilot

Wisconsin Public Radio: Britney Spears Doesn’t Get The Freedom Of Choice. Neither Do People Under Guardianship by Elizabeth Dohms-Harter (July 13, 2021)

featuring Anna Krieger of Center for Public Representation and Jordan Anderson, Co-Team Leader of the Wisconsin Community of Practice State Team for the Center on Youth Voice/Youth Choice

Wisconsin Public Radio’s Central Time: Conservatorship 101 And Ideas For Reform (July 2, 2021)

featuring Anna Krieger of Center for Public Representation. Access the Wisconsin toolkit referenced on the show.

Vice: The Horror of an Unwanted Conservatorship, According to People Who Lived It by Reina Sultan (July 8, 2021)

featuring Cory from the CPR/Nonotuck pilot describing his experience under guardianship and how Supported Decision-Making works for him

Salon: The supportive decision-making model that might have saved Britney Spears from conservatorship by Laura Guidry (June 27, 2021)

featuring Jimmy C. from the CPR/Nonotuck pilot and Jordan Anderson, Co-Team Leader of the Wisconsin Community of Practice State Team for the Center on Youth Voice/Youth Choice

New York Times: Britney Spears’s Case Calls Attention to Wider Questions on Guardianship by Amanda Morris (July 10, 2021)

Slate: For the Disability Community, Britney Spears’ Situation Is All Too Familiar interview with Sara Luterman by Mary Harris (June 29, 2021)

Teen Vogue: Britney Spears’s Conservatorship Is a Disability Rights Issue That Deserves More Attention by Haley Moss (June 25, 2021)

The Guardian: After Britney Spears testimony, lawmakers push changes to conservatorship laws by Sam Levin (July 2, 2021)

Time Magazine: How Britney Spears’ Case Could Change the Future of Conservatorship by Abigail Abrams (June 25, 2021)

The Nation: Free Comrade Britney! by Sara Luterman (March 31, 2020)

For more media coverage of Supported Decision-Making check out our resource library.

Want to talk with us more about Supported Decision-Making?

updated July 12, 2021

Statement: Britney Spears Spotlights the Need for Change Now

Statement from Disability Justice and

Supported Decision-Making Advocates:

Britney Spears Spotlights the Need for Change Now

June 25, 2021

access PDF of statement here

 

When Britney Spears chose this week to share her personal experience living under a conservatorship, she shined a national spotlight on the problems of guardianship systems and the damaging and potentially devastating impact they can have on people’s lives.  Ms. Spears is not alone in her experience.  We are disability justice organizations that have been working for years to advocate for alternatives to overbroad, unnecessarily restrictive, and undue guardianship.  We work to promote alternatives to guardianship and conservatorship, namely Supported Decision-Making, which is taking hold more and more across the United States.   No one should be subjected to the experiences described by Ms. Spears.  There is a better way that gives people the support that they need and does not diminish their personhood.  Now is the time to fully embrace less-restrictive options that allow people to maintain their rights, dignity, and independence.

The problem with guardianship and conservatorship: While we do not know the details of Ms. Spears’ case outside of what she has shared, we do know that the U.S. legal system is overly reliant on restrictive guardianships and that the disability community and families want and deserve different and better options.  Guardianship and conservatorship take away fundamental rights people have to direct their own livesrights that many Americans never imagined could be restricted.   While the law varies from state to state, guardianship orders routinely authorize third parties to make decisions about the most personal and important decisions in an individual’s lifechoices that impact the person’s own body and reproductive health; how and where they receive medical, psychiatric, and psychological treatment; how the money and resources they work to earn are spent; and even with whom they associate.  Guardianships also can prohibit someone from voting or getting married.  Guardianship is regularly imposed on people of all ages, with all kinds of diagnoses, and with all kinds of life experiences.  And, as Ms. Spears’ circumstances illustrate, even people with significant financial resources can face barriers in seeking to get the court to restore their rights.  Once they are under guardianship, often individuals are not informed they have the right to request a hearing to have their rights restored.  This is further complicated by their difficulty in retaining representation from an attorney of their choice.  It is much easier to get a guardian appointed than to have a guardianship terminatedeven when an individual’s personal or medical circumstances change significantly, when a long period of time has passed, or when there is a viable alternative available.  In fact, it is often extraordinarily difficult to get a guardianship terminated.

An answer—Supported Decision-Making: We know from our advocacy work that many families are told guardianship is the best way to protect their family member.  Families report that they are rarely presented with alternatives to guardianship.  Supported Decision-Making is an alternative to guardianship and conservatorship that allows a person to retain their legal rights while getting support with decision-making from those they choose and trust.  In our work, we have seen time and again that many people at risk of guardianship or previously under guardianship can make their own decisions as long as they have the right support to understand their options and communicate their choices.  Supported Decision-Making should be considered as an alternative to guardianship, regardless of the person’s disability, be it intellectual or developmental, physical, psycho-social, or cognitive in nature.  Supported Decision-Making does not require court involvement and can be coupled with other legal tools, such as powers of attorney and advance health care directives, that promote self-determination and autonomy.  For more about Supported Decision-Making, visit http://www.supporteddecisionmaking.org/ and https://supporteddecisions.org/.

Supported Decision-Making is already a part of the mainstream disability rights discourse and is gaining traction among elder advocates.  It has been the subject of pilots, and many states have introduced or passed bills codifying Supported Decision-Making into law.  Critically, judges across the country have terminated guardianships when presented with evidence about  Supported Decision-Making, including in New York, Virginia, the District of Columbia, Indiana, Massachusetts, and Maine, among others.  Supported Decision-Making has also been widely embraced by federal agencies, including the National Council on Disability and the Administration for Community Living, as well as organizations representing lawyers and guardians like the American Bar Association and the National Guardianship Association.  Its important role was recently reinforced in recommendations issued at the Fourth National Guardianship Summit.

We commend Ms. Spears for her bravery in sharing her experience.   Courts, policymakers, and advocates should be listening first and foremost to the experiences of people who have been subjected to the guardianship and conservatorship system.  We stand in solidarity with Ms. Spears and all other people who have experienced guardianship and conservatorship and who long for a better way.

Signed,

National Resource Center on Supported Decision-Making – http://www.supporteddecisionmaking.org/

Center for Public Representation – https://supporteddecisions.org/

Quality Trust for Individuals with Disabilities – http://www.dcqualitytrust.org

The Arc of the United States – https://thearc.org/

Autistic Self Advocacy Network – https://autisticadvocacy.org/

Burton Blatt Institute – www.bbi.syr.edu

Cardozo Bet Tzedek Legal Services – https://cardozo.yu.edu/bet-tzedek-civil-litigation-clinic

Disability Rights California –  https://www.disabilityrightsca.org/

Disability Rights Texas – www.disabilityrightstx.org

Disability Voices United – DisabilityVoicesUnited.org

Georgia Advocacy Office – https://thegao.org/

Indiana Disability Rights – www.indianadisabilityrights.org

National Disability Rights Network – www.ndrn.org

Self Advocates Becoming Empowered – https://www.sabeusa.org/

TASH – https://tash.org/

 

CONTACT:

 

Morgan K. Whitlatch

Legal Project Director, National Resource Center on Supported Decision-Making

Legal Director, Quality Trust for Individuals with Disabilities

mwhitlatch@dcqualitytrust.org; 202-459-4004

http://www.supporteddecisionmaking.org/

 

Anna Krieger

Senior Attorney

Center for Public Representation

akrieger@cpr-ma.org; 617-965-0776

https://supporteddecisions.org/

 

 

Center on Youth Voice/Youth Choice Announces First Community of Practice

The Center on Youth Voice/Youth Choice is delighted to announce that, after an extensive selection process, we have chosen Georgia, Vermont, and Wisconsin to form our first Community of Practice on alternatives to guardianship for youth with intellectual and developmental disabilities (IDD).

Congratulations to the first Center on Youth Voice/Youth Choice Community of Practice state teams: Georgia, Vermont, and Wisconsin!

CPR is part of a group of organizations led by the Institute for Community Inclusion at the University of Massachusetts, Boston that have been awarded a five-year grant from the Administration for Community Living to establish the Center on Youth Voice/Youth Choice.

The selection committee was comprised of Center on Youth Voice/Youth Choice staff, including two representatives from Self Advocates Becoming Empowered, two members of the Center on Youth Voice/Youth Choice National Coalition, and other youth self-advocates from the Center on Youth Voice/Youth Choice Advisory Committee. Twenty-six highly qualified state teams applied for this opportunity. 

This selection process has illuminated many important collaborations and initiatives across the country related to alternatives to guardianship for youth with IDD.

CYVYC is developing a series of promising practices that will highlight these innovative approaches.

Over the course of the five-year grant, eight more states will join the Community of Practice to share ideas, exchange effective strategies, and elevate the voices of youth with IDD in their states.

For more information about the CYVYC project and Community of Practice, please contact Allison Hall by email at allison.hall@umb.edu or by phone at 480-677-9677.

Need help with setting up an SDM agreement in Massachusetts?

Center for Public Representation has recently partnered with the Suffolk Law School Health Law Clinic to provide representation to people in Massachusetts interested in using Supported Decision-Making.

The clinic will be representing a limited number of people in Massachusetts who are interested in using SDM and need assistance creating an SDM Agreement. Student lawyers in the clinic will be representing people who have guardians and people who do not.

If you live in Massachusetts and are interested in getting help with Supported Decision-Making from the Suffolk Health Law Clinic, please contact us by email or phone!

Supported Decision-Making Bill refiled in Massachusetts!

This week, Senator Joan Lovely and Representative Paul Tucker filed Supported Decision-Making legislation in the new session of the Massachusetts legislature!

You can see a copy of the SDM bills here:

Massachusetts Advocates for Supported Decision-Making (MASDM), a diverse group of self-advocates, families, legal services providers, older adult advocates, and disability advocates supports the SDM bill.  CPR is a proud member and leader of this broad coalition.

Read more about what the SDM bill would do in our Fact Sheet.

Man in green shirt reading from paper into microphone at table in statehouse.
Johnathan Jenkins, SDM Pilot Participant, testifying in support of SDM bill at 2019 Statehouse hearing.

If you or your organization would like to support SDM Legislation in Massachusetts, we want to hear from you!

Supported Decision-Making legislation was also introduced in the last legislative session.  The Committee on Children, Families and Persons with Disabilities favorably reported the bill and the SDM bill had promising momentum before the COVID-19 pandemic.

We applaud Senator Lovely and Representative Tucker for their continued commitment to Supported Decision-Making and look forward to working with the legislature on this important legislation.