Securing appropriate housing for people with mental illnesses has become a hot political issue in Erie County, New York. The State psychiatric hospitals have been downsized to such a degree that there are literally thousands of people who, twenty years ago, routinely would have been warehoused in an institution, but who are now living in the community. Advances in pharmaceutical and therapeutic treatments have enabled a great many to manage their illnesses and live without constant supervision. This independence is often desirable - if the necessary preparations are made for, and with, the newly freed citizens.

When they leave the hospital, many of these people have the best intentions to become self-sufficient, contributing members of the community, but they do not yet have the skills to achieve that goal. Some emerging from long institutionalizations do not know how to manage bills, get prescriptions filled, complete disability and/or social services forms, shop for groceries, apply proper grooming skills, or housekeep. For days, they may go without eating, without taking medication, without talking to another human being, and even without cleaning themselves. As they do not fill our the necessary forms, they lose their modest disability benefits. Eventually they become a nuisance to other residents, and community organizations, such as Forever Elmwood, tell their municipality's Common Council or other governing body that they no longer want people with psychiatric disabilities living in their neighborhoods.

The answer to this often repeated tragedy is not keeping these vulnerable citizens institutionalized but to provide proper community supports. These less-than-fortunate individuals could vastly improve their lifestyles with access to adequate housing, proper case management services, peer support, community outreach programs, and instruction in socialization skills. However, at present there are long waiting lists for people who wish to enroll in a limited number of these services, if they are available in the applicant's area at all. Thus, thousands of people with psychiatric disabilities are doing without the rehabilitation programs they need.

Reports from the authorities indicate that many citizens have complained about people "acting strangely" in their neighborhoods. Since little follow-up investigation is done in non-criminal cases, no one knows if these people have mental health impairments but it is assumed so. One apartment complex, Symphony North Apartments, received so many complaints that, in a one-month period, they evicted more than 100 residents, many of whom are thought to have psychiatric disabilities. No one has tracked where these forcibly displaced people ended up or how many are living on the streets. A recent survey of homeless people in Erie County, conducted by the Erie County Commission on Homelessness, indicates that more than 34% of this constituency has either a serious mental illness or both a mental health and a chemical addiction problem.

Mental health service providers that offer housing have been quietly working for years to seek more funding for housing and added supports to aid the most severely and persistently mentally ill people in our county. They have appealed to federal programs such as Housing and Urban Development (HUD) to obtain more "housing slots" or opportunities for community living.

An impressive example of federal-local cooperation called "Shelter Plus Care" calls on HUD to fund the actual housing and for the New York State Office of Mental Health (OMH) to provide the supportive services surrounding the person who receives it. This program already serves hundreds in Erie County successfully, empowering people to become functioning citizens in their communities.

Ironically, even though this kind of housing support program is meeting the needs of the lucky individuals who qualify for it, they are being blamed for the problems caused by other people outside the program. Often the latter have not accessed the service due to some of the following reasons: there are limited slots available; they have been stalled on long waiting lists after having applied to receive these services; they lack the supports needed to function independently in the community; they refuse programs when they are offered out of fear, because of negative experiences in the past with mental health service providers.

In 1995, due to complaints by Buffalo West Side Neighborhood Block Clubs and community leaders, the Erie County Legislature established the "Erie County Siting Committee." Consisting of neighborhood block club chairs and other community leaders, this body requires human service agencies that want to establish businesses in Erie County to apply to it to get permission to do so.

At one Erie County Community Services Board meeting, the President of Forever Elmwood, Michael Ferdman, said that it was not the people in wheelchairs that bothered them, but the people with serious mental illnesses that cause the disturbances. Many Siting Committee members complain that the presence of human service organizations there draws "undesirables" into their neighborhoods. They reason that if the number of such agencies decreased in certain districts, fewer people in need would live there. To the contrary, human service agencies believe that they are only trying to meet the needs of their consumers by offering services in the areas in which they currently live.

In February 1999, responding to years of complaints from Neighborhood Block Clubs, the Erie County Legislature's Health Committee declined to approve $1.7 million dollars of HUD money, earmarked to serve more homeless people with mental illnesses, until one demand was met. Its members wanted the ZIP codes of persons with mental illness who were already in a Shelter Plus Care program. The Chair of the Health Committee, Judith Fisher, stated that she wanted to know where the "problem people" live, evidently assuming that the "problem people" are the ones who receive housing subsidies and community supports. Although mental health housing providers would dispute this assumption, they needed the withheld funds and ultimately capitulated. The ZIP codes of two hundred and five individuals, who had been settled by the housing program, were handed over to the Legislature's Health Committee, and shortly afterward were published in the Buffalo News.

Most people who read the article about the ZIP codes and responded in writing were outraged at the Erie County Legislature's Health Committee's high-handed tactics. One "Letter to the Editor" compared the demanding of the participants' ZIP codes to what then-Alabama Governor George Wallace was trying to accomplish in the 1960's with African-Americans: keeping them out of the places to which everyone else could go.

The news media has also contributed to the increased stigmatization of people with mental illnesses, not just by printing the ZIP codes of people with psychiatric disabilities who have used Shelter Plus Care. In the recent past, they repeatedly highlighted the fact that, in the last year or so, six Western New Yorkers with mental illnesses have allegedly committed murders. It could have been put in context by also noting how minute a proportion that is of the hundreds of thousands of current and former recipients of mental health services in the State.

On April 14, 1999, Action for Mental Health, the OMH Bureau of Recipient Affairs, and Restoration Society, Inc. sponsored a Town Meeting on Patient Rights held at The Western New York Independent Living Project, Inc. in Buffalo, New York. The meeting was well attended by recipients and providers of mental health services.

When asked to name them, it was apparent that members of the audience had a good idea and understanding of the rights of recipients of mental health services. Interestingly enough, recipients and providers mentioned a couple of rights that do not directly involve treatment in inpatient or outpatient mental health settings: the right to live independently and the right to have adequate housing. When the audience was asked to vote on which rights are the most important to them, these two were among the top five of twenty items being considered. We at Action for Mental Health see this response as a clear indication that housing rights are a major concern to mental health recipients and providers.

Those who attended the town meeting unanimously agreed that the right to be respected by others was the most important. Regrettably, when recipients in the audience were asked to cite experiences in which their rights have been violated, their answers most commonly had to do with the lack of respect they have received in the community. Recipients stated that this is a frequent occurrence when dealing with the general public which, they feel, does not treat them as equal human beings. Typical of this lack of respect were two items: the difficulty recipients have in obtaining housing in the particular areas where they wanted to live; and the ongoing sense of being discriminated against once they came to the community.

After reviewing the testimony gathered at this town meeting, it is apparent that many people with psychiatric disabilities are having difficulty finding a satisfying life in the community. Complaints by neighborhood block clubs about the presence of people with mental illnesses also demonstrates the difficulty the general public has with the concept of recipients living in the community. In light of the hospital closings, the absurd notion of sending large numbers of people with mental illnesses back to be institutionalized is, fortunately, no longer an option. As the only viable alternative, people with and without mental illness must learn to live together amicably in our neighborhoods. Several steps may be taken that would enhance community living for both groups.

More housing assistance with added supports to help prepare persons with mental illness for this radical shift in lifestyles should be made available, and additional HUD dollars should be sought. Mental health housing providers should secure these dollars and then train individuals with psychiatric disabilities who are already in housing programs to assist newly released recipients to gain necessary instruction in independent living, medication monitoring, socialization, and other skills needed to live in the community. A low or no-cost solution to the need for supplemental supports, this idea will benefit both "levels" of recipients: the peer service providers will enjoy a sense of being needed, and the new residents will gain the skills needed to enter the community successfully.

Mental health service recipients should also be made aware of their rights when dealing with the mental health system and the community at large, and even encouraged to live wherever they want, despite discouragement from neighborhood block clubs and county legislators. Presentations on patient rights and housing rights, given by informed individuals with psychiatric disabilities to other recipients, should be a priority. Mental health recipient service providers should work with Housing Opportunities Made Equal, Inc. (HOME, a nationally recognized civil rights organization in Western New York, which is dedicated to eliminating discrimination in housing) to provide consumers with the knowledge of recipients' housing rights under the law. Funding sources should also be identified, and appropriate literature should be developed for this initiative to educate recipients on Patient Rights.

There should be support to oppose the official systematic singling out of any group of people living in certain areas of Erie County. The community should encourage and conduct petition drives, voter registrations, and surveys of the general public living in the Allentown area of downtown Buffalo to learn whether a concentration of people with psychiatric disabilities living nearby is really a concern to many neighborhood citizens. The process of gathering this information, and its public-spirited nature, should be spotlighted for local media and legislators.

The community should be encouraged to enlighten Erie County legislators to persuade them of the wisdom of abolishing secondary zoning requirements for human service agencies. Efforts to do so should be organized and publicized in the local media.

New York State must be convinced to increase housing slots and the complementary housing supports for people with mental illness. The existence of people with debilitating psychiatric illnesses is not the real issue; the problem is the lack of support they receive in our community. Governor Pataki must be convinced of the need to take responsibility for this problem and create the mechanisms to provide the needed services to enhance community living for our neighbors with psychiatric disabilities.

A much larger anti-stigma campaign to encourage a more knowledgeable, balanced view of recipients should also be implemented throughout Erie County. The "Break the Circle of Stigma" program does a fine job educating schools of all levels from grade school to universities on mental illness.

Having read innumerable newspaper headlines screaming that people with mental illness have committed horrendous crimes, many citizens are frightened of individuals with psychiatric disabilities, even though, statistically, recipients are no more likely to commit a crime than people without mental health diagnoses. Our aforementioned advocates could work with the Erie County Network to dispel sensational news and horror-movie stereotypes and to educate the public on the real facts about mental illness. They could provide informative public service announcements for broadcast, and perhaps use other media outlets, such as roadside billboards, advertisements in the newspapers, and placards on buses. Only a limited number of publicity channels are available for free. If more money is needed for this outreach campaign, then underwriters interested in providing accurate information on mental illness should be sought.