“I want to regain my independence.”
It’s a simple request, one that Lorraine S. has repeatedly made. But due to a lack of community-based residential and support services, this affable 64-year-old woman is stuck in a nursing facility that has no plan to transition her home.
She is not alone.
Richard C., also 64, is languishing in yet another facility. His clinical team supports his fervent desire to leave, but due to longstanding capacity and service limitations, he has been denied access to the services he needs to transition to the community where all agree he would thrive.
With your support over the years, the Center for Public Representation has persistently fought for people’s right to retain and regain their independence. In 2023, CPR achieved sustained reforms for people with disabilities, people of color, children with psychiatric disabilities, older adults, and people in congregate settings – enforcing their right to be safe, to make informed choices, to remain in their homes, to actively engage in life.
Mindful of the thousands of older adults and people with disabilities who died in congregate placements during the pandemic, we pressed forward on one of the nation’s first cross-disability class action lawsuits brought under the Americans with Disabilities Act. Marsters v. Healey seeks to end the unnecessary institutionalization of thousands of people with disabilities in Massachusetts nursing facilities – people like Lorraine and Richard.
CPR’s mission to integrate disability service systems produced important reforms in 2023. We reached a new settlement agreement in Amanda H. v. Hassan, compelling New Hampshire to develop more community residential alternatives for class members who are institutionalized at the state’s only publicly operated nursing facility. We monitored a two-year-old court settlement in North Carolina to reduce reliance on sheltered workshops and expand opportunities for people with intellectual and developmental disabilities to obtain real jobs for real pay. And CPR extended its collaboration with Alabama agencies working to expand access to intensive home-based services for children with serious emotional disturbance and autism spectrum disorders.
In addition, we called upon Massachusetts to preserve its faltering children’s behavioral health system, now in crisis due to prolonged waiting lists, reduced provider capacity, and inadequate care coordination, and stressed the need to preserve and expand access to intensive home-based services created because of CPR’s landmark Rosie D. class action nearly two decades ago.
CPR submitted numerous amicus briefs on multiple cases throughout the country, including a filing with the 11th Circuit Court of Appeals on behalf of families and professionals so that children with complex medical conditions can remain with their families and receive care in their homes. We helped coordinate the national effort to submit comprehensive comments on proposed regulations governing Section 504 of the Rehabilitation Act, which prohibits discrimination based on disability.
On both the national and state level, CPR continued to herald Supported Decision-Making (SDM) as a viable alternative to restrictive guardianship. Our SDM staff are providing technical assistance and support to 11 state teams through the Center on Youth Voice, Youth Choice, which promotes alternatives to guardianship for teens and young adults up to age 26. In addition, we are partnering with individuals with developmental disabilities and family members to make SDM more available to linguistically, ethnically, and culturally diverse communities in Massachusetts – a project that intentionally integrates CPR’s Racial Equity Initiative into its SDM work.
CPR submitted recommendations highlighting SDM to the US Senate Special Committee on Aging for its hearing on guardianship alternatives, and supported seven Massachusetts SDM pilot participants who shared their stories with the Committee. We also testified at the Massachusetts Statehouse in favor of a bill to establish a legal framework for SDM, ever hopeful that the Commonwealth, like the District of Columbia and two dozen states, will recognize SDM and require courts to consider this less-restrictive option before appointing a guardian.
In addition, CPR provided testimony supporting a Massachusetts bill banning aversive interventions and opposed a 2nd bill seeking to establish outpatient commitment. CPR also supported bills to prevent disability discrimination in healthcare and to require the use of community alternatives prior to sending someone to a psychiatric hospital or emergency room.
It’s been a busy year, and your generous support has made it all possible. Going forward, we will strive to ensure people with disabilities are afforded the rights and opportunities they deserve.
With your help, CPR will remain vigilant in our response to injustice as we develop novel initiatives, pursue effective cases, and implement lasting and equitable remedies. Your contribution matters. Donations can be made online at www.centerforpublicrep.org/donate/ or mailed to CPR, 5 Ferry Street, #314, Easthampton, MA 01027.
With deepest gratitude and good wishes for your health and safety,
Cathy E. Costanzo
Executive Director
