News

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

May 4, 2022

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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

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.

Applications are due by 5 PM PST on February 10, 2022.

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

Statement from Disability Justice and

Supported Decision-Making Advocates:

Britney Spears Spotlights the Need for Change Now

June 25, 2021

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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 lives—rights 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 life—choices 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 terminated—even 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/

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.

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.

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:

• Senate SDM bill (SD 1746)
• House SDM bill (HD 2134)

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.

Center for Public Representation is honored to announce that we are part of a group of organizations that has been awarded a five-year grant from the Administration for Community Living. The grant is to implement a national Alternatives to Guardianship Youth Resource Center, which will be called the Center on Youth Voice, Youth Choice.

The partnership is led by the Institute for Community Inclusion at the University of Massachusetts, Boston.

The Center on Youth Voice, Youth Choice (CYVYC) will work to increase the use of guardianship alternatives by youth with intellectual and developmental disabilities to maximize self-determination and autonomy.

The partnership is led by the Institute for Community Inclusion at the University of Massachusetts, Boston and includes Center for Public Representation, Self-Advocates Becoming Empowered, Human Services Research Institute (HSRI), consultants from the Harvard Law School Project on Disability and the Georgia Advocacy Office, and subject matter experts, including disability activists, educators, parents, and advocates.

The new center will conduct research, create a sustainable model for capacity building and resource dissemination, and form a Youth Ambassador program that will train youth in leadership development and mentoring. In addition to directly engaging youth with IDD in the work of the project, it will be guided by an advisory committee, 75% of whom will be youth with IDD.

Principal Investigator Allison Hall of ICI explained, “Our research finds there is limited information on alternatives to guardianship for youth with IDD. We are excited to bring the voice of young adults with IDD into this work and support youth as leaders and change agents.”

The Center will be informed by ICI’s existing research funded by the Institute on Education Science, U.S. Department of Education, on how alternatives to guardianship during the transition process contribute to post-school outcomes.

If you would like to get involved with the work of the Center on Youth Voice Youth Choice, we would love to hear from you!

ICI’s Director, Cindy Thomas also notes, “CPR, HSRI and the Georgia Advocacy Project have led efforts to design, implement and evaluate supported decision-making pilots.  This work, along with the extensive array of resources developed by CPR will provide a strong foundation for the Center. I am excited by the opportunity ICI has to lead this work in partnership with a tremendous team.”