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    Áras Attracta lesson: rights-based model

    On 4 January 2016 I found myself in a court-residents. The review group recommended a move to a room in Castlebar, Co. Mayo. One man and ve women were on trial, charged with assault alleged to have occurred in Áras Attracta. Sitting in the courtroom my hope was to use this experience as part of my own catharsis, having lived through physical abuse in Áras Attracta which is the HSE-run residential centre in Swinford, County Mayo where 96 men and women with intellectual disabilities live. It featured of course in a recent exposé by RTÉ’s Prime Time programme. Bodily integrity, in the context of receiving support for personal care, brings an unspoken vulnerability. Fear is ever-present. Dignity and respect should be basic imperatives. Those of us involved in the rhetoric of human rights and the independent-living movement must remember that our sisters and brothers with learning disabilities are uniquely susceptible to abuse. The material captured on the hidden camera placed by Prime Time’s undercover reporter showed staff shouting, pushing, force-feeding and dragging residents across the floor. The footage was used in evidence in the case by the State prosecutor. The five staff, including nurses and care workers, were found guilty of assault. All but one avoided jail terms. Four were sentenced to community service orders in lieu of prison terms. The fifth was given a prison term of four months which is currently under appeal. The protracted saga of Áras Attracta is a reminder of the slow pace of the State’s apparatus. Two years on from Prime Time’s exposure of what was happening in Áras Attracta an independent review group published the ‘What Matters Most’ report in August with thirteen recommendations and an action plan for all congregated settings. The most pertinent of these was to “accelerate the process of supporting people to move into community living, avoiding transitional arrangements”. The HSE has committed to implementing this and claims that “individual needs assessments have been completed for all residents to identify their future support requirements to live a successful life in the community”. The independent report stated there was “widespread institutional conditioning and control” of people living in Áras Attracta. It found that this was generally imposed for the convenience of staff and management and the model of service was structured to suit staffing constraints rather than the needs and aspirations of residents. The review group recommended a move to a rights-based social model of service delivery in one of its overarching recommendations for Áras Attracta. Most service-providers for people with disabilities are state-funded. They remain institutions where power and control exerted over us and people’s right to independence and choice is denied. The report tells those of us who have to have relationships with service providers nothing new. It con rms unspoken realities. There have been a series of HIQA reports on these services that back up this analysis. The inertia in implementing recommendations from these reports coupled with the lack of rights-based legislation further demonstrates state inertia when it comes to people with disabilities. The Áras Attracta situation merely highlighted the insidious practices that take place in residential institutions. Often there is an inference that somehow people who are abused brought it on ourselves. In the context of Áras Attracta, what was considered, or diagnosed as challenging behaviour could better be described as very challenging circumstances for the residents. There are still over 2,700 people living in congregated settings throughout the country. Residential settings echo a discredited previous era. We suspect, we fear and we know. However, still they continue. Twenty-seven people currently living in Áras Attracta are now waiting to move into new supported accommodation. The Minister for people with disabilities, Finian McGrath, has announced that the Government has provided a dedicated €100m capital fund to facilitate de-congregation over the period 2016-2021. €20m has been provided for 2016 and Áras Attracta has been prioritised to receive funding in this first phase. Action is now needed, not just another report or political promise that will become redundant as time passes and nothing changes. The kernel of the ‘What Matters Most’ report is in the overaching recommendation for Áras Attracta that “The voices of the residents need to be facilitated, listened to and promoted”. Why would you need to make such a recommendation? What has gone so badly wrong that this has to be one of only three overarching recommendations. Fostering the independent voice of the people accessing services, attending to their preferences, and ensuring people know their rights and have access to advocacy services should have been a given. These are the voices that must now determine the future. Rosaleen McDonagh

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    Independent Living

    2016 marks another anniversary, the 20th anniversary of a ‘Strategy for Equality’. This was the report of the Commission on the Status of People with Disabilities. Their task was to establish what life was like for people with disabilities in Ireland and to prepare a roadmap to equality for people with disabilities. Before deciding on the appropriateness of any celebrations, it is timely to ask a question: has Ireland become more equal for people with disabilities? The Commission took what it described at the time as “the unusual step” of consulting with people about their ‘lived’ experiences. It reported that people with disabilities experienced outdated social and economic policies and public attitudes, and pointed to “justifiable anger” felt by people with disabilities and their families. In the intervening years a multitude of laws and policies have been introduced but the question remains. Let me state it again: has Ireland become more equal for people with disabilities? A cursory look at the Strategy and subsequent developments would suggest that quite a lot has been achieved on many of its recommendations. A National Disability Authority (NDA) has been established, a Disability Act was passed into law, a National Advocacy Service was established, and a swathe of legislation was brought into force on equality, assisted decision-making and education. However, if you dig a little deeper, there is a different story to be told. Most of these measures were poorly thought out or half-implemented. The Disability Act 2005 created little by way of the rights-based legislation envisaged. Instead it provided a basic right to a person with disabilities to an assessment of need. However, no rights to services follow on from that assessment. Even this limited ‘right’ to an assessment has been only partly commenced and currently just caters for children. The Strategy envisaged an independent advocate for people with disabilities. In 2007 the Citizens Information Act was passed. This provided for “Personal Advocates” with statutory and wide-ranging powers. Four years later a limited non-statutory service called the National Advocacy Service was commenced. A total of 35 advocates operate across a country where there are an estimated 600,000 people with disabilities. The Education for People with Special Educational Needs Act 2004 has been stalled indefinitely. This means that children in mainstream schools struggle to get educational supports. Successive Governments have failed to address the issue of the cost of disability. Many of the manifestos for the recent election used the term “cost of disability” to describe plans to give people an extra ten euro on their welfare payment. This is a regrettable approach. Cost of Disability demands than an increase in welfare payments. It requires a genuine recognition that having a disability can be expensive and moving to alleviate that additional expense. The Strategy recommended that the Department of Environment develop a policy with “the right of people with disabilities to live as independently as possible” as its aim. In 2011 the ‘Congregated Settings’ report was published by the HSE, the agency responsible for care services. This was premised on moving people with disabilities back into the community. Progress on this ambition has been unacceptably poor. The Fine Gael manifesto for the recent election includes a target for 1/3 of residents to move back into the community by 2021, three years after the initial deadline for moving all residents. This is an acknowledgement that the policy has failed and that a generation of people will probably die in institutions. The Strategy stated that ful lment through relationships and sexuality is a basic right. Since 1993, the criminal law has cast a legal shadow over sex and people with disabilities, particularly those with intellectual disabilities or mental illness. The law has provided an easy excuse to opt-out of providing sex education that would strengthen their ability to protect themselves and possibly open the door to a ful-filling, intimate relationship. This is a bleak landscape, but it’s not all negative. We are beginning to win the ideological battle. Concepts of person-centredness, independent living and autonomy are creeping into the parlance of the body politic. The battle now must be to get our partially commenced legislation fully implemented. This will involve resources in many cases and a change in culture in others. Any marking of this 20th anniversary of the ‘Strategy for Equality’ must reflect that not much has changed and must pose the challenge to find the political will for equality. We have all the tools at our disposal. Sarah Lennon Sarah Lennon is Training and Development Of cer with Inclusion Ireland

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