Wednesday, March 10, 2010

Major Step Forward in Housing for People with Mental Disabilities in New York

by Noelin Fox

The State of New York has pursued a policy of deinstitutionalisation of people with mental illness from large psychiatric hospitals since the 1970’s. One of the main alternative ‘community based’ housing services used by the State is ‘Adult Homes’. In a very significant judgement delivered in the District Court in New York’s Eastern district in September 2009 these ‘Adult Homes’ were themselves declared to be institutions akin to the psychiatric hospitals of earlier times. The case was brought by Disability Advocates Inc. (DAI) on behalf of over 4000 residents of 21 Adult Homes in New York City, each of which house 120 people or more. (http://documents.nytimes.com/disability-advocates-inc-v-david-a-paterson#p=1) All of these Adult Homes are privately owned and are licensed and monitored by New York’s Department of Health and the Office for Mental Health. The conditions in Adult Homes were brought to public attention in 2002 by a series of articles in the New York Times which highlighted the poor conditions in the homes.

DAI alleged that the State was in violation of the Americans With Disability Act’s (ADA) ‘integration mandate’ by providing services for residents in a segregated setting rather than in more appropriate community-based services. DAI requested the Court to order the defendants to offer ‘supported housing’ to the residents – ‘supported housing’ units are generally permanent individual apartments scattered throughout the community where residents receive support as needed.

The ‘integration mandate’ of the ADA - and as expressed in the famous Olmstead Supreme Court judgment in 1999 - requires States to provide services to people with disabilities ‘in the most integrated setting appropriate to their needs’. In Olmstead the Supreme Court identified institutionalisation as one form of discrimination and held that ‘..unjusti´Čüed institutional isolation of persons with disabilities is a form of discrimination' (See http://caselaw.lp.findlaw.com/scripts/getcase.pl?court=US&vol=000&invol=98-536 )

Federal regulations define ‘most integrated setting’ as a setting which enables people with disabilities to interact with non-disabled people to the fullest extent possible. The parties disagreed about whether in fact the Adult Homes are institutions. In particular they presented contradictory evidence about the extent to which residents were free to come and go, the level of access to neighbourhood facilities, interaction with non-residents, employment/voluntary work opportunities outside of the Adult Homes and the extent of regulation of meal times, visiting hours, daily schedules and distribution of personal allowances.

Judge Nicholas Garaufis found that ‘The overwhelming evidence in the record compels the court to find, as a factual matter, that Adult Homes are institutions.’ He defined ‘institution’ (quoting Elizabeth Jones, one of DAI’s expert witnesses) as ‘..a segregated setting for a large number of people that through its restrictive practices and its controls on individualization and independence limits a person’s ability to interact with other people who do not have a similar disability.’ He stated that the Adult Homes in question bear all the hallmarks of an institution as so defined.

The situation in Ireland?

In this country, although we do not have community based residential services comparable in size to the Adult Homes, the pattern is nonetheless similar. Since the 1970 there has been a steady decrease in the numbers of long stay residents (one year or more) of psychiatric hospitals - falling form over 13000 in 1971 to just over 1500 in 2006. In this time period there has been a steady increase in the number of people accommodated in ‘community residences’. (See Mental Health Commission Report 2008 www.mhcirl.ie/ ) with 1664 people living in such residences by 2008. Community Residences are designed to fulfil a therapeutic and rehabilitation function enabling people to move from higher to lower levels of support and independence where possible.

A survey and evaluation of Community Residences published by the Mental Health Commission in 2007 indicated that most residents were happy with their lives and their level of accommodation. However, the survey also revealed that few people used social amenities in the community and a significant percentage of people had no system of support outside of the residences. Importantly the report indicated that the environment of the residences reflected ‘mini-institutions’ particularly those for people with high support needs – this included shared bathrooms and sometimes bedrooms and ‘constricting rules and regulations, the necessity for which was questionable’. (Happy Living Here – a survey and evaluation of Community Residential Mental Health Services in Ireland). The vast majority of community residences are owned or leased by the HSE and staffed by HSE personnel. This in itself is problematic. The literature emphasises that best practice in the provision of residential services to people with the disabilities it is necessary that the housing element and the support elements of the service be provided by distinct providers. Both the report on the evaluation and government mental health policy as expressed in A Vision for Change recommend that housing should be provided by the local authorities and that working links between the HSE and local authorities be established to further this recommendation.

The challenge for Ireland is how to manage the process of deinstitutionalising people with disabilities so that we do create new (albeit smaller) institutions in the community which will in time to come be recognised as such. The task of deconstructing these mini-institutions is a task which is both unnecessary and avoidable. At this point we should be mindful of the need and the possibility of establishing genuine community-based housing options which take account of the needs and wishes of the individuals concerned and are based on the principles of Independent Living as established in the UN Convention on the Rights of Persons with Disabilities. These principles of are those of choice and control over where and with whom one lives and a right to participation in community with the supports needed to achieve this. The growth of grouped housing, even if based in the community, is a long way from the aspirations of the CRPD of individual choice, control and empowerment.