The Right to Independent Living: The Forthcoming Congregated Settings Report

We all should be able to decide where and with whom we live with.  It is wholly wrong that a person with a disability has less choice or control over such important matters.  A person in their 20’s may not want to share a house with a group of people 20-30 years their senior or with people they do not like or with a group of people they have nothing in common with.  While it might seem obvious that we all should have choice and control over such decisions the reality is that persons living in congregated settings or group homes very often do not have a choice.  The Irish Times this week reported on the eagerly awaited forthcoming review entitled “Time to Move on from Congregated Settings: A Strategy for Inclusion” (commissioned by the HSE) see here.  The review should be published in the coming months.  This review comes in the wake of recent critical reports on conditions in psychiatric services and services for persons with disabilities see blog posts here and here.

The main findings of the congregated settings review according to the Irish Times is as follows:

  • All institutions (with 10 residents or more) should be closed within the next seven years as they breach the rights of persons with disabilities.
  • The 72 institutions accommodating 4,000 people should be replaced by supported or independent placements in the community.
  • There were huge differences in the average costs per resident in different units ranging from €46,000 – €115,000 – €385,000.
  • Thousands of people in congregated settings are estranged from the community and stripped of their dignity, privacy and independence.
  • The institutions are in breach of the states obligations under the United Nations Convention on the Rights of Persons with Disabilities and inconsistent with Government policy.
  • More than 50% of residents in congregated settings have severe intellectual disabilities and have lived for decades in these settings.
  • Over one third of the residents have no contact with friends or family in the preceding year.
  • The medical model is rampant – approximately 40% of staff are nurses.
  • Managers are struggling to provide frontline services such as bathing, dental hygiene and toilet access with residents being washed and clothed in communal areas.
  • A new model of supported or assisted living in the community that facilitates people with disabilities making their own life choices was proposed.
  • Residents should also have access to specialised services based on individual assessments, as well as access to mainstream health and social services.
  • The cost of running community based services would be similar to the €460 million budget for institutions in 2008.
  • The budget cuts have undermined movement to community-based services.
  • The closing of institutions in order to be successful needs to be accompanied with carefully planned and supports, such as advocacy, person-centred planning, support for community inclusion and further education support.
  • No new congregated settings should be built and that admissions to institutions should cease immediately.
  • A senior HSE official should be charged with driving and implementing a seven-year programme to close down inappropriate settings.
  • A “congregated settings fund” should be established to help the transition to a new model.

The deinstitutionalisation movement has been underway in Ireland since the 1970’s and the prevalence of long-term residents has dramatically decreased.  While the deinstitutionalisation movement has corresponded with an increase in the provision of housing in the community this Report highlights the deficiencies with the type of housing provided.  This criticism levelled at the “Community Residences” is not new.  In the Report Happy Living Here: A Survey and Evaluation of Community Residential Mental Health Services in Ireland (2007) it was found that:

The climate and culture of the residences reflected more those of a ‘mini-institution’ than of a home-like environment, especially in the high support residences. The medium and low support residences were somewhat more relaxed, but a large number employed constricting rules and regulations, the necessity for which was questionable.

The housing provided to persons with disabilities fails to meets their needs and does not work towards independent living in the community in a real sense.  The congregated settings report is right in pointing out that the state in providing for these mini institutions in the community are failing to live up to their obligations under the United Nations Convention on the Rights of Persons with Disabilities, in particular in respect of the right to independent living in Article 19.   Choice and control in relation to where a person with a disability lives needs be the key consideration.  It seems obvious that we all should have the right to have control over where and whom we live with.  It is wholly wrong to remove that choice from a person based on their disability.

The findings and recommendations in the congregated settings report as reported in the Irish Times are positive and will assist in working towards community-based independent living for persons with disabilities.  However, the reality of making the necessary changes will undoubtedly be frustrated with a paternalistic medical model approach that is engrained in residential services.  The difficulties and frustrations in closing psychiatric institutions in Ireland is a cautionary tale that calls into question the likelihood of achieving the closure of congregated settings in the 7-year timeframe.

Recent Developments in New York

Since the 1970’s the State of New York has also operated a policy of deinstitutionalisation of people with mental illness opting for community based housing as opposed to housing in psychiatric institutions.  Adult Homes are the main type of community based housing provided for by the State of New York.  In a hugely important decision in September 2009 the District Court in New York’s Eastern District held that Adult Homes were institutions similar to the psychiatric hospitals used previously to house persons with mental illness.  See commentary by Noeline Fox here.

Disability Advocates Inc. brought this case representing in excess of 4000 residents of 21 Adult Homes in New York City, each of which house 120 people or more.  These Adult Homes are privately owned, licensed and monitored by the Department of Health and the Office for Mental Health for New York.  The New York Times in a series of articles brought the poor conditions in these Adult Homes to public attention in 2002. The Disability Advocates were successful in raising the argument that New York was in violation of the “integration mandate” under the Americans with Disabilities Act as they provided services on a segregated setting as opposed to the compliant community based services.

The Supreme Court in Olmstead V. L. C. (98-536) 527 U.S. 581 (1999) held that the “integration mandate” under the Americans with Disabilities Act placed an obligation on states to administer programmes for persons with disabilities in the most integrated setting appropriate to their needs.  In this case there was disagreement as to whether Adult Homes provided for in by the state of New York constituted institutions.  The judge in this case decided that the evidence presented demonstrated that Adult Homes were in fact institutions.  In particular, the evidence around the freedom of persons resident to come and go from the home, mingle with non-residents and meal times etc. were hallmark of an institution.

The decision of District Court decision is under appeal to the Federal Appeals Court.  However, last month the court of appeal lifted the temporary stay on the District Courts order to begin immediately transferring thousands of people with mental illness out of segregated group homes.  See the New York Times Report here.  The state of New York is now required to begin the process of developing and executing a plan to create a minimum of 1,500 units of supported housing each year for the coming three years.  This is a hugely significant decision that follows 7 years of litigation and fervent opposition from the owners of the Adult Homes and the state.  The decision means that all of the current and future residents of Adult Homes will be provided with the choice of independent living taking up supported housing in the community (at least until the appeal court delivers its judgment).

The Right to Independent Living: The Forthcoming Congregated Settings Report

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