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I am a consumer working with adult home residents.

On any given day in New York State, 15,000 people with psychiatric disabilities languish in adult homes, which do not offer rehabilitation services.

Adult homes are mostly run for profit. The homes have been written up in The New York Times. Adult care operators receive a large portion of the residents' SSI checks and often are payees on the SSI check. While the adult home operators provide meals, they only give a small portion of the SSI to residents as a personal needs allowance (PNA). Most adult home residents suffer from:

Low personal needs allowance
Lack of money for clothing
Inability to pay for air conditioning fees charged by home administrators
No access to more independent housing

Poor medical services In worse homes problems include:

Reprisals for speaking out against the home operator
No recreational or vocational services
Woefully inadequate case management
Forced medication; incorrect dispensing of medication
Threats of withholding the personal needs allowance for any noncompliance with the adult home
Poor quality food

Through my work at Coalition of Institutionalized Aged and Disabled (CIAD), I have met many adult home residents. I am amazed at their resilience and pride. These leaders organize others despite fear of reprisal. I became acquainted with residents who run residence council meetings. I also met residents who attend adult home caucuses, which are gatherings of adult home residents from across the City.

About 50 adult home residents attend a caucus meeting every other month. Topics at these caucuses range from the very specific to the very broad means to accomplish change. Topics have ranged from specific changes (e.g., lack of telephone service in homes and lack of photo ID to broad educational issues like how a legislative bill becomes a law).

In addition to caucuses, adult home residents elect a council or president. These leaders facilitate monthly meetings. They find a way to put up signs without money for xeroxing. The leaders I have met arrive on time and attend every meeting. Most importantly, resident leaders mobilize other adult home residents who do not recognize that they have a voice worth hearing. These leaders deserve our respect.

Adult home resident leaders cannot accomplish change on their own. They require the support of the entire mental health community.

Editor's Note: Monday March 1st adult home residents from across the state will join together in Albany to SPEAK OUT for better conditions for adult home residents. To become more involved with the education of adult home residents, contact Tanya at CIAD (Coalition of Institutionalized Aged and Disabled) (212) 481-7572. A version of this article appeared in the January-February issue of the The Morningside Westside Bulletin.