Organizing

CIAD works directly with adult home residents to organize for change. CIAD coordinates several activities to achieve our goals, including:

• Policy Committee meetings with resident leaders to strategize our campaigns
• Annual Adult Home Resident Speak-out in Albany
• Resident leadership trainings

CIAD’s adult home organizing staff are among the only advocates who regularly visit adult homes and adult home residents in the city.

Some of the issues we work on include:

Greater Housing Opportunities

CIAD believes that the key to changing the adult home system requires moving from a system of treatment and management and towards a system of empowerment, rehabilitation and recovery. In redefining the system, we must create and fund supportive housing models -- ensuring access to appropriate housing remains a critical step to a different future.

A Timeline of the Effort to Achieve Independent Housing for Adult Home Resident

April 2002 The New York Times publishes a series of Pulitzer Prize winning, front page investigative reports, "Broken Homes", by Clifford Levy.

In the wake of the NY Times articles....

Spring 2002 Governor George Pataki establishes the Adult Home Work Group  to make recommendations to reform the adult home system. The Work Group recommends:

• We support passage of a waiting list bill for all people with a diagnosis of mental illness awaiting housing in the community;
• We create a waiting list that documents as many residents as we can who would like to move;
• We document the barriers adult home residents face when applying and competing for scarce housing.

Consumers Rally for Housing in Albany

January 2008 The Campaign for Mental Health Housing organizes the largest mental health rally ever held in New York, with over 1,500 people attending.

Modest Gains are Made

NYC Supported Housing Initiative

2009 As a result of CIAD and NYSCAHR advocacy, 60 NYC adult home residents move to scatter-site apartments, funded by a NYS Legislative initiative in 2006.

Disability Advocates Inc. v. Paterson

Trial takes place from May to June 2009

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.

On March 1, 2010, Judge Garaufis releases his final remedy plan. New York State appeals the decision two days later.

April 2012 The NYS Court of Appeals overturns the federal court's decision on technicalities.

March 2014 A settlement between New York State and the plaintiffs in O'Toole v. Cuomo is approved by the federal court.

CIAD's Court-Related Activities

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 testify at the 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.

Hurricane Sandy

Super Storm Sandy 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. Fifteen hundred 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, 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.

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 at this time 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 have 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.

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, severeal million dollars were spent by the state to air-condition resident rooms.

The Need for an Increase the Personal Needs Allowance

Most adult home residents rely on federal and state benefits such as Supplemental Security Income (SSI) benefits or Social Security Disability Income(SSDI) 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), now a $193 per month that is meant to cover the cost of clothing, toiletries, transportation, snack, 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 a 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.