Our History of Advocacy

The Coalition of Institutionalized Aged and Disabled (CIAD) is a non-profit, resident-led advocacy organization of adults living in Adult Care Facilities (ACF) and Resident Councils.

The organization was established in 1973 in response to the disenfranchisement and isolation residents experienced (and still do) living in institutionalized settings.

Together we empower them to have a say in how their residences are run, and to develop life skills and independence.

At the very core of our mission, we provide residents tools and skills they need to:

  • Advocate for themselves.
  • Protect and promote the rights of residents.
  • Improve the quality of their lives and care with as much agency as possible.

The Coalition of Institutionalized Aged and Disabled (CIAD):

  • Organizes residents into resident councils.
  • Trains and nurtures resident leaders.
  • Educates residents about their rights.
  • Promotes their participation in the affairs of their own residences.
  • Engages residents in broader public policy issues.

Since our founding in the 1970s, CIAD found institutional policies and regimens were slowly eroding the personal autonomy of residents, and robbing them of their independence, individuality, and decision-making power. Residents were dependent upon a system that neither met their needs nor consulted them on how their needs could best be met.

CIAD Staff are among the only advocates who regularly visit Adult Care Facility residents in New York City. We wish this were different as our visits shed light on the good as well as the opportunities for change happening in each home, and with the system as a whole.

Our social justice vision is one that seeks to protect people’s rights, improve the quality of their lives and transform institutions into real community settings. We continue our work to this day.

Greater Housing Opportunities

The CIAD team, including Staff, Board of Directors, Peer Advocates, and Resident Leaders believe the key to changing the adult home system requires moving from a system of treatment and management of residents to a system of empowerment, rehabilitation, and recovery. This will require redefining a system that has not been the most supportive of people in these situations.

The history of CIAD activism has really been a history of housing rights and opportunities.  Organizing residents to promote inspection reform has been critical in improving the housing of residents in Adult Care Facilities. Having appropriate heat, air conditioning, food, respect and autonomy are essential to being stably housed.  Stable and decent housing is an essential right for all people, thus housing is woven into the very fabric of our advocacy, training and resident engagement. To that end, we must create and fund supportive housing models to ensure access to appropriate housing as a critical step to a brighter future for all. 

Adult Home Inspection Reform

To many residents, the Department of Health (DOH), the agency that licenses and regulates adult homes, is an inaccessible and unknown entity. Because of the lack of information, residents are unable to bring up serious concerns about conditions in the home to the proper authorities. While DOH conducts an in-person inspection of all the homes on an annual basis, and is required to speak with residents, most residents are unaware of the inspection as an opportunity to speak directly with inspectors. In some cases, residents are even fearful that the inspectors are there to inspect them or shut down the facility and render them homeless.

To facilitate better communication between residents and DOH, CIAD members worked to reform the inspection process. CIAD’s media team created a training video for inspectors titled “Who Was That Guy?”which conveys the mis-perception that many adult home residents have about the inspection process and offers suggestions for better communication. 

The video was shown to adult home inspectors across the state and played a strong role in facilitated discussion between inspectors and residents about improvements that could be made. We also published a brochure with the New York State Health Department that explains the inspection process to residents and how residents can participate in the process. Follow this link to the Health Department’s website for the brochure: When Your Home Is Inspected.

As you scroll through our history below, you will see how we have been working for many years on issues related to our Residents…and our work is not done. We continue to advocate, train, and learn about what is happening so that we can partner with other agencies and policymakers to create better living conditions and opportunities for residents of Adult Care Facilities.

2020 – 2023: Covid-19 Pandemic

As with the rest of the world, CIAD had to make changes to how we reach our residents. When the first wave of the COVID-19 pandemic hit, it took a terrible toll on residents of Adult Care Facilities (ACF). We lost many residents, leaders, friends, and people who stood side by side with us through countless advocacy campaigns promoting the rights and dignity of our members. These losses have struck us to the core.

During the first months of the pandemic, we collected information from ACF residents exposing the devastating impact COVID-19 had in New York’s adult facilities, including the number of resident deaths and how well facilities were carrying out the Department of Health’s guidance to keep residents safe. The number of deaths reported to us were significantly higher than the data reported by the New York State (NYS) Department of Health which adult home residents who died in hospitals, rending the reported results inadequate and even misleading.

We have shared stories of the courageous and resilient residents who lived through the pandemic. These stories are reflected in this ProPublica and The New Republic collaboration, We Don’t Even Know Who Is Dead or Alive: Trapped Inside an Assisted Living Facility During the Pandemic. The article features CIAD (former?) Peer Advocate and Board of Directors member Renee Johnson, and the facility where she lived, Bronxwood Assisted Living. CIAD has organized residents here for many years.

As we pivoted our work during the pandemic, we:

  • Trained our resident leaders in how to conduct meetings on-line rather than in-person.
  • Established a toll-free support line, 866-503-3332
  • Launched a newsletter written by residents and resident Councils, to enhance communicate. Take a look at the September 2020 and December 2020 issues.

During the pandemic, we have continued to actively pursue efforts to support the health and safety of residents in their homes.

Historical Overview of CIAD and our Contribution to the Reform Effort with Adult Home Residents 2002 – 2014

In April 2002, The New York Times published Broken Homes by Clifford Levy which earned a Pulitizer Prize and begins changes within the adult housing system. George Gitlitz, CIAD’s former Adult Home Project Director, served as a valuable resource.

  • Spring 2002 Governor George Pataki established the Adult Home Work Group which made recommendations to move 6,000 adult home residents out of adult homes, create Independent Case Management Services, and assess the housing needs of residents. 
  • The New York State Coalition of Adult Home Reform is established and led by the Schuyler Center for Analysis and Advocacy, NY Association of Psychiatric Rehabilitative Services, Mental Health Association of NYS, and CIAD.
  • June 2003 Disability Advocates, Inc., MFY Legal Services, and other legal groups sue New York State claiming the state is in violation of the Americans for Disabilities Act. 
  • 2003 Modest gains are made when Independent Case Management is established in 12 homes. 

Historical Overview of CIAD and our Contribution to the Reform Effort with Adult Home Residents.

  • Winter 2004  – the First Annual Adult Home Resident Speak Out, in Albany. 
  • January 2005 –  CIAD Action at the Joint Legislative Mental Hygiene Budget Hearing.
  • 2005: The Need for Air-conditioning. CIAD worked with adult home residents to ensure the provision of air-conditioning in resident rooms. For the many frail elderly and individuals taking psychotropic medications, heat can be deadly. Many residents living in adult homes are highly susceptible to heat illness or heat stroke.
    • In the summer of 2005, CIAD launched a series of public meetings, released a documentary titled “Dying for Air: The Need for Air-Conditioning in Adult Homes”, and vigorously rallied the press. 
    • Through our efforts, a strong team of legislators (including Assemblyman James Brennan, Senator Marty Golden, Assemblywoman Audrey Pfeffer, and Senator Diane Savino) met with the Department of Health and CIAD to collaborate on a policy initiative that would address the issue. Since then, several million dollars were spent by the state to air-condition resident rooms.
  • 2006-2007 The Need to Increase the Personal Needs Allowance. Most adult home residents rely on federal and state benefits such as SSI – Supplemental Security Income or SSDI – Social Security Disability Income (https://www.ssa.gov/benefits/) as their main source of income. Most of this money is used to pay for the cost of living in an adult home. What’s left is called their Personal Needs Allowance (PNA), that is meant to cover the cost of clothing, toiletries, transportation, snacks, personal care, and entertainment. 
  • Considering the high cost of living in New York and the limited funds available to many residents of adult homes, CIAD fought for a raise in the PNA.  Because of continued pressure by adult home residents working with CIAD and with the assistance of coalition groups such as the New York State Coalition for Adult Home Reform (NYSCAHR) and the New York Association of Psychiatric Rehabilitation Services (NYAPRS), residents won an increase. New York State raised their portion of the SSI check by $15 starting January 2006, and put in an additional $14 in January 2007.
  • 2006 New York Office of Mental Health released assessments of the 2,600 residents assessed, over 500 residents are ready, willing, and able to move.
  • 2007 The People’s Waiting List Campaign where we supported a waiting list bill for all people with a diagnosis of mental illness awaiting housing in the community. We created a list that documents as many residents as we can who would like to move as well as the barriers they face when applying for housing which is in limited supply.
  • January 2008 The Campaign for Mental Health Housing organized the largest mental health rally ever held in New York, with over 1,500 people in attendance.
  • 2009 As a result of CIAD and New York State CAHR advocacy, 60 NYC adult home residents move to scatter-site apartments, funded by a NYS Legislative initiative in 2006
  • May – June 2009 Disability Advocates, Inc. v. Paterson. On September 7, 2009, Federal Court Judge Nicolas Garaufis rules that New York State is in violation of the Americans with Disabilities Act by illegally segregating adult home residents with psychiatric disabilities in large adult homes.
  • March 1, 2010 Judge Garaufis releases his final remedy plan. New York State appeals the decision two days later.
  • November 2010 CIAD and ally organizations hold a rally in front of Governor Paterson’s midtown NYC office to demand he uphold the federal court’s ruling.
  • November 2010 CIAD and ally organizations hold a rally in front of Governor Paterson’s midtown NYC office to demand he uphold the federal court’s ruling.
  • Two CIAD leaders and former residents testified at the Disability Advocates, Inc. v. Paterson trial.
  • CIAD’s housing video, Coco’s Story, is used to educate residents, policymakers and the general public about the case.
  • CIAD is an amici in the motion against the state’s appeal.
  • CIAD conducts a 9 week Peer Advocacy Training for 15 former and current residents to help educate and support other residents during implementation of the court order.
  • 2011 – 2012 CIAD organizes and convenes the NYC Adult Home Resident Housing Task Force to:
  • Fast track moves by adult home residents to supportive housing via the NYC Single Point of Access (SPOA) process.
  • Identify and overcome barriers in the process.
  • April 2012 The New York State Court of Appeals overturns the federal court’s decision on technicalities.
  • March 2014 Settlement reached between New York State and the plaintiffs in O’Toole v. Cuomo, formerly Disability Advocates, Inc. v. Paterson, is approved by the federal court.

October 2012 Hurricane Sandy and the Aftermath

Overlapping our history of advocacy and empowerment was Super Storm Sandy which had a devastating impact on the people of New York City including the 2,300 adult home residents living in 15 facilities in the Rockaways, Coney Island, and Staten Island. 1,500 residents from 11 homes were evacuated after the storm hit. Many slept on cots in crowded conditions. They were all remarkably resilient given what they endured on a daily basis. 

CIAD spent 6 months tracking and reaching out to residents and responding to their immediate needs as a result of the storm. We reported residents’ experiences and circumstances to state agency staff and helped them respond to residents as well. CIAD staff:

  • Helped obtain beds to replace the cots that Belle Harbor Manor residents had been sleeping on for months.
  • Assisted residents at the Park Slope Armory obtain absentee ballots for the November 7, 2012 presidential election, helping preserve their fundamental rights as citizens.
  • Helped one resident obtain appointments at a local methadone clinic when he could not get to his regular clinic appointments miles away.
  • Responded to complaints from residents of Park Inn Home for Adults housed at York College that they were only eating cold sandwiches for two weeks by arranging for “Two Boots”, a local Park Slope restaurant, to provide hot meals for 200 residents and staff at the shelter.
  • Alerted the New York State Health Department that residents from Promenade Nursing Home arrived at Brooklyn Technical High School without records, medication, or nursing home staff.
  • Alerted the State Health Department about unsafe conditions at an adult home where residents had sheltered in place.

We documented residents’ experiences in a participatory research project conducted with the help of students from the Columbia School of Social Work. Download our Sandy Policy Brief. We then made recommendations to New York City and New York State about how we can best prepare to keep residents safe when the next disaster strikes.

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