Organizing

CIAD works directly with nursing home and adult home residents to organize for change. CIAD coordinates several activities to fuel our work, including:

  • Quarterly Caucus meetings with adult home residents throughout NYC
  • Bi-weekly Policy Committee meeting 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 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

The People’s Waiting List Campaign

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 diverse supportive housing models; ensuring access to appropriate housing remains a critical step to a different future. The People’s Waiting List Campaign is CIAD’s means for taking that critical step.

The People’s Waiting List is a compiled list of adult home residents who wish to move to alternative independent housing in the community. Governor Spitzer vetoed a bill that would establish a waiting list for mental health consumers seeking placement in OMH housing. In the absence of a state list, adult home residents decided to create their own. Right now there are 217 adult home residents on the People's Waiting List. Contact us if you are an adult home resident or mental health consumer and want to add your name to the People's Waiting List.

Governor Spitzer appropriated funds in the 2007-08 state budget for 2,000 new units of housing for people with mental illness. The State Office of Mental Health (OMH) has refused to earmark any of these new units of housing to adult home residents despite broad, unprecedented support to do so among the mental health service, provider and consumer community. OMH is opposed to earmarking the units, in part, because they claim adult home residents are already a priority population for housing. On paper OMH is correct, but in practice adult home residents lose out to other priority populations for housing.

 The goals of the People’s Waiting List is to campaign for greater adult home resident access to independent housing units and to support passage of a waiting list bill for all psychiatrically disabled persons awaiting housing in the community. The campaign documents as many adult home residents as we can who are waiting for housing in the absence of any organized state plan to document housing need. The campaign also documents the problems and barriers adult home residents face when applying and competing for this scarce housing.

Supported Housing Initiative for NYC Adult Home Residents

As a result of CIAD and NYS Coalition for Adult Home Reform advocacy, the New York State legislature funded 60 supported housing units for New York City adult home residents with a psychiatric disability. OMH is currently working with three housing providers to implement the initiative: Transitional Services of NY, Postgraduate Center and Comunlife. This is a significant first step, but as indicated by the People's Waiting List and the New York State Health Department's own assessment, we have a long way to go.

Consumers selected for this housing initiative will live in their own apartment or share an apartment with one other person. Consumers will be responsible for shopping, cooking, cleaning and paying bills. The individual will pay 30% of their income for rent and reasonable utilities. Staff will visit monthly or more often as needed.

Take these basic steps if you are interested:

  • Discuss your desire for community housing with your case manager or peer specialist
  • Develop a plan
  • Work with your case manager to submit an HRA 2010e application

CIAD held Housing Forums in Brooklyn and the Bronx in October and December to educate residents about the housing initiative and launch the People's Waiting List Campaign. A total of 110 residents from 15 adult homes in the Bronx, Manhattan, Brooklyn and Queens attended the forums.

 

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 have been working to initiate reform in the inspection process. CIAD's media team created a training video for inspectors titled "Who Was That Guy?", which conveys the misperception 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 has 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 Independent Case Management

The interests of adult homes sometimes conflict with those of the residents. At the same time, many New York adult homes house over one hundred people, but do not have adequate staffing to take care of residents' needs. To fill this void, CIAD has been advocating for state-sponsored case management slots that could provide much needed services. Paid by the Department of Health while housed in the homes, these case workers would be independent from the facility. Thus, they would be in a better position to provide housing assistance for those interested in more independent housing, better mental health services, and assistance in conflicts in the homes. So far Independent Case Management has been secured at the Garden of Eden, Ocean House, Queens Adult Care, Riverdale Manor, Park Inn, and more sites are in the works!

 

The Need for Air-conditioning

CIAD has been working 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, 2 million dollars has been set aside by the state to supplement the cost of air-conditioning in adult homes.

 

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), usually $150 or $170 a 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 has been fighting for a raise in the PNA. Last year, 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 will put in an additional $14 in January 2007.