News

What does it really mean to get guardianship?

What are other options to consider?

What is “Supported Decision-Making“?

Are you a family member or a supporter of a person with disabilities?  Do you want to learn more about ways to support people with disabilities with decision-making about their lives?

In Massachusetts, when people turn 18 years old, they become legal adults.  This means the law says they get to make their own decisions about their health care, education, finances, and other matters.

Parents of people with disabilities may be incorrectly told that going to court to get guardianship is the only way to remain involved in their child’s adult life.  But that is not true.  Getting guardianship is a serious step to take, and it is important to fully understand the consequences first.  There are other options – including Supported Decision-Making – that may work better for people with disabilities and their families.

FREE Trainings in 2025

The Center for Public Representation (CPR) is collaborating with community partners to offer a number of free SDM trainings in 2025 that are geared towards families and supporters of people with disabilities in Massachusetts.  The trainings are scheduled for January, February, March, May, and June.  More information about these educational opportunities is listed below.

• January, February, & March 2025 – The Cambodian Mutual Assistance Association (CMAA) and CPR partnered on a series of three hybrid (virtual and in-person) trainings.
  • The workshops provided education on Supported Decision-Making, with each focusing on a different life area – education, health care, and finances.
  • The workshops were held during CMAA’s monthly support group meetings, with Khmer interpretation provided.
    
  • The workshops were held on:
    • January 25, 10 am – 12 pm ET on “Supported Decision-Making in Education“
    • February 22, 10 am – 12 pm ET on “Supported Decision-Making in Health Care“
    • March 29, 10 am – 12 pm ET on “Supported Decision-Making in Finances“
    • More information is available in this flyer – English and Khmer
    • Training materials (in English and Khmer) are available here.
• March 11 & March 18, 2025 – Conexiones Latinx-MA and CPR partnered on webinars hosted by The Arc of Greater Haverhill-Newburyport in March.
  
  • Entitled “Guardianship is Not the Only Option: Supporting Decisions in Adulthood,” these webinars are tailored to families of people with intellectual and developmental disabilities
  • Training materials (in English and Spanish) are available here
• May 21, 2025 – CPR is partnering with SDM experts Jonathan and Nancy Gardner for a free webinar hosted by Boston Center for Independent Living in May
  • Entitled “Supported Decision-Making: Supporting Youth with Disabilities in Adulthood,” this webinar is tailored for families or supporters of people with disabilities who are approaching adulthood. It is scheduled for May 21, 6-7:30 PM.
    • REGISTER HERE
    • Webinar Flyer
• June 11 & 24, 2025 – Conexiones Latinx-MA and CPR are partnering on webinars hosted by the Parent/Professional Advocacy League (PPAL) in January.
  • Entitled “Guardianship is Not the Only Option: Supporting Decisions in Adulthood,” these webinars are tailored to families and professionals who support people with behavioral and mental health disabilities, including people with intellectual and developmental disabilities (IDD) who are dually diagnosed.
  • The first webinar is scheduled for June 12, from 6-8 pm ET and will be presented in Spanish.
    • Spanish – REGISTER HERE
  • The second webinar is scheduled for June 24, from 6-8 pm ET and will be presented in English (interpretation available upon request).
    • English – REGISTER HERE

On September 16, 2024, Morgan K. Whitlatch, CPR’s Director of Supported Decision-Making Initiatives, presented alongside I DECIDE Georgia leaders, including Dana Lloyd, Angad Sahgal, and Grace Sherman, at a session of the annual Reinventing Quality Conference in Baltimore, Maryland.

As a first-generation kid, it was hard. The Virgin Islands is quite behind when it comes to social awareness or acceptance, so my mom and I had no clue what to do when we learned I had autism. We didn’t know what I was going to do in the future.

Grace Sherman, I DECIDE Georgia

The interactive session explored Supported Decision-Making as a person-centered and culturally responsive strategy for overcoming intersectional barriers people with disabilities face when seeking decision-making supports.  It highlighted lessons learned from projects in Georgia and Massachusetts that are seeking to increase access to SDM in underrepresented and underserved communities.  It also showcased the work, experiences, and expertise of youth leaders who are advancing SDM across their states and beyond.

I was born in India where there was little awareness and support for people with Down syndrome. However, I was fortunate to have an incredible circle of support, including my family and even my neighbors. I was the first person with Down syndrome to attend the neighborhood preschool alongside my friends.

Angad Sahgal, LetMeDoIt and I DECIDE Georgia

For more information on this presentation, please see:

• Reinventing Quality PowerPoint Slides
• I DECIDE Georgia
• LetMeDoIt
• The Georgia Advocacy Office
• CPR’s SDM Training and Technical Assistance Center
• Center for Public Representation

The teacher [in Vermont] asked my parents if they wanted me to have a guardian . . . And then my family said I don’t need that because, in my culture, we don’t believe in that . . . [M]e and my family decided I don’t need a guardianship . . . Sometimes people need help from somebody else.  Like it can be your friend or it can be your family, someone you trust.

Hasan Ko, Youth Leader and Self-Advocate

On August 28, 2024, CPR Staff Attorney Megan Rusciano presented alongside Judge Paula Carey, retired Chief Judge of the Massachusetts Trial Court, and Elizabeth Moran, Executive Director of The Arc of Colorado, at a plenary session of the National Association of Presiding Judges and Court Executive Officers (NAPCO) conference in Denver, Colorado.  The presentation topic was “Breaking Barriers: Ensuring Effective Communication for Individuals with Disabilities in Court.”

While effective communication is fundamental to ensuring that people with disabilities can meaningfully engage in every aspect of the judicial process, many courts still do not have the skills needed to address communication barriers and ensure that people with disabilities have an equal opportunity to participate in court services, programs, and activities. The presentation aimed to educate judges and court staff on people with disabilities’ right to effective communication under the Americans with Disabilities Act.  It provided practical tips and strategies courts could use, including recognizing the role of Supported Decision-Making, to ensure that people with disabilities have equal access to the court system.  Over 120 judges and court staff attended the presentation.

The presentation followed from a webinar that Rusciano and Moran held earlier this year for the National Center for State Courts (NCSC) on “Ensuring Effective Communication for People with Disabilities”.

CPR collaborated with the Monorom Family Support Program of the Cambodian Mutual Assistance Association (CMAA) on a workshop for families in Lowell, Massachusetts.  The topic was Supported Decision-Making (SDM) and other alternatives to guardianship.  This workshop was part of an initiative designed to increase access to SDM in linguistically, ethnically, and culturally diverse communities in the State.

This interactive hybrid workshop – with participants both on-line and in-person – was held on August 24, 2024.  It represented the culmination of a series of planning sessions with community leaders and advocates at CMAA over a number of months to ensure that the training’s approach, format, and materials would meet the needs of the audience.

Thank you to CMAA for its leadership and vision!

Please read our FINAL REPORT, “Addressing Diversity, Equity, and Inclusion: A Project to Advance SDM Through Community Partnerships.”

The Center for Public Representation, along with the National Disability Rights Network and other disability and civil rights organizations, recently filed an amici curiae (“friend of the court”) brief in a guardianship case before the Western District of the Missouri Court of Appeals.

Critical issues on appeal include: (1) whether people subject to guardianship have the right to retain an attorney of their choice to challenge the terms of their guardianship; and (2) whether it is legally and ethically sufficient for counsel representing people subject to guardianship to act based on their “best interest,” rather than their expressed wishes.

Proposed amici have an interest in ensuring that every person subject to or facing guardianship enjoys full and meaningful due process rights, given the significant liberty and autonomy interests at stake in these proceedings . . .

Brief of Amici Curiae, p. 1

In this case, the trial court disqualified a Missouri P&A attorney who was retained by the person subject to guardianship to represent her in seeking modification of the terms of the guardianship, improperly concluding that she could not hire private counsel because of the prior adjudication of incapacity.  The trial court also erred in ordering the person’s court-appointed attorney to take actions in his client’s representation based on a good faith determination of her best interest. On appeal, the Missouri P&A addressed arguments based on Missouri law.

Amici’s brief focused on the appellant’s right to hire a zealous advocate to challenge the terms of the guardianship on federal due process grounds.

While guardianship remains one of the most sweeping civil judgments that can be levied upon a person, it does not and cannot result in stripping people of their Constitutional due process rights. . .

Brief of Amici Curiae, p. 5

Amici’s brief also educated the court about best practices identified through national trends in the field.

National trends have emerged over the last eight years to amplify the fundamental nature of the right of people subject to guardianship to hire and direct their own counsel to challenge the terms of their guardianship.

Brief of Amici Curiae, p. 12-13

10 organizations joined the amici brief.

In addition to CPR and NDRN, these organizations included the American Civil Liberties Union, the American Civil Liberties Union of Missouri, Autistic Self-Advocacy Network, Bazelon Center for Mental Health Law, CommunicationFIRST, Disability Rights Education & Defense Fund, National Coalition for a Civil Right to Counsel, and National Association of Councils on Developmental Disabilities.

Read the amici brief here.

Thanks to the support of the Massachusetts Developmental Disabilities Council, CPR has been working with key partners on an initiative designed to increase access to Supported Decision-Making (SDM) in linguistically, ethnically, and culturally diverse communities in Massachusetts.

Do you want to request a FREE training for families on alternatives to guardianship in Massachusetts?  Please email SDM@cpr-ma.org.

March has been a busy month for CPR’s SDM and Racial Equity Initiative team!

• CPR, in partnership with the Black Autism Coalition and Autism 509, shared information about Supported Decision-Making in a Facebook Live session. This session included interpretation for the Haitian Creole community and has been posted to YouTube.
• In partnership with The Arc of Greater Haverhill-Newburyport and Conexiones Latinx-MA, CPR also offered two state-wide training sessions, titled “Guardianship is Not the Only Option: Supporting Decisions in Adulthood.” One session was presented in English, and one was presented in Spanish.   The content of the Zoom sessions was developed with the feedback of focus groups of family members of people with intellectual and developmental disabilities across the state, as well as a project advisory committee of community leaders.

We have been impressed by the response to these trainings.  As participants have said:

Thank you so much . . . We have learned so much.

Comment on Facebook Live Session on March 14, 2024

Thank you so much for putting together this training.  It was informative and inspiring!

Comment about Webinar on March 21, 2024

Muchas gracias

Comment about Webinar on March 28, 2024

Do you want to request a training for families on alternatives to guardianship in Massachusetts?  Do you know of any groups that would be interested in learning more?  We are here to help!  Please email SDM@cpr-ma.org to make a training request.

Are you a family member of a person with intellectual or developmental disabilities?  Do you want to learn more about ways to support youth and young adults with decision-making about their lives?

FREE Trainings for Families
Guardianship is Not the Only Option: Supporting Decisions in Adulthood

The Arc of Greater Haverhill-Newburyport, Conexiones Latinx-MA, and the Center for Public Representation are collaborating on these two training sessions. These Zoom trainings will help empower families and people with disabilities through education and information about all the options, including Supported Decision-Making.

Thursday, March 21, 2024, 11:30 AM – 1:00 PM (in English)

Thursday, March 28, 2024, 6:30 PM – 8:00 PM (en Español)

REGISTER – English and Español.

If you would like to request accommodations or interpretation, please contact Rowan DeAza at rowan.deaza@thearcofghn.org or 978-373-0552, ext. 216.

“Empower and Ability in the Hispanic Community” & “Supported Decision-Making: Diversity, Equity & Inclusion,” funded through grants from the Massachusetts Developmental Disabilities Council, U.S. Department of Health and Human Services, Administration for Community Living, Federal Award No. 93.630.

The Center for Public Representation is working with other members of the Massachusetts Advocates for Supported Decision-making (MASDM) Coalition to advocate for passage of legislation that would create a legal framework for SDM across the Commonwealth.  A legislative deadline is fast approaching in early February.  We urge you to support this effort by taking action now.

As MASDM co-chair, Jonathan Gardner, said in a recent news article: “SDM has allowed me to practice and strengthen my decision-making skills and learn self-advocacy . . . But until SDM legislation is passed in Massachusetts, I have no guarantee that my decisions will be respected.”  Legislatures in at least 19 other States and the District of Columbia have already passed similar legislation.  We urge Massachusetts to join them.

Please contact the Chairs of the Joint Committee on Children, Families, and Persons with Disabilities (for the Senate bill, S. 109) and the Joint Committee on the Judiciary (for the House bill, H. 1485) to ensure the bills go to vote.

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.