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Turmoil over de-institutionalisation

Even ministers wobble on agreed progressive policy of moving people with intellectual disabilities back into the community

The planned closure of the St Mary of the Angels institution in Beaufort, Co Kerry has brought a disconcerting media focus on the issue of de-institutionalisation of people with intellectual disabilities. The families of residents have made their feelings known on how the closure of that institution is being handled. They have launched a Facebook campaign to ‘Save St Mary’s’ and have been prominent in the media coverage.

The families weren’t the only prominent voices in the media. Local public representatives in Kerry County Council called for a reversal of a decision to move the residents of St Mary’s to the community. Fine Gael Senator Paul Coghlan demonstrated a disturbing deficits-model of disability in saying “a stop must be put to this… (residents) cannot decide for themselves. To treat them as if they can move on…is not possible.” Even Daniel O’Donnell weighed in, saying he was sorry to hear of the struggle and lauding the care and the atmosphere in the centre.

The voices of the men and women who actually live in the institution have been noticeably absent from this debate. Despite media reports, the closure is not a pilot project. It is national policy to close all such institutions by 2018.

The infamous Áras Attracta in Swinford, Co. Mayo is another institution that is due to shut. Following the abuse and assaults uncovered by ‘Prime Time’, a report was commissioned from Dr Kevin McCoy called ‘What Matters Most’. This report captures the abusive nature of institutional living for people with intellectual disabilities. It undertook a ‘day in the life’ exercise of residents. It found that while staff members were pleasant and respectful, it was nonetheless a sterile environment, devoid of meaningful activity and absent of choice. Where the residents had capacity for independent living skills, this was not reflected in planning goals. It concluded that residents of “Áras Attacta have little opportunity to realise their potential to live the rich and satisfying lives that they have a right to aspire to”.

Áras Attracta is far from an isolated case. Countless Health Information and Quality Authority reports show that many residents are at risk and that for many, life is demeaning and unfulfilling. An Inclusion Ireland report on the first 50 HIQA inspections found “a picture of extensive non-compliance with regulations in areas such as health and safety, independent advocacy, restrictive practices and correct checking of medicines”.

Áras Attracta on ‘Prime Time’

Minister Finian McGrath said in a disappointing response to a recent parliamentary question that he totally accepted that “not all people residing at St. Mary of the Angels in Beaufort will be suitable for transitioning to community living”. Such a statement represents a worrying step backwards from Government policy and contradicts all evidence. Community-based models have been shown to increase personal growth, decrease challenging behaviour, and increase community participation and engagement in meaningful activity. People who are supported to live in the community do better in family contact, social networks and friendships, self-determination and choice, quality of life, adaptive behaviour, and above all else satisfaction.

Ireland is not unique in closing these institutions. Across the world there is an acceptance that institutionalisation does not work. The experience in the USA has, in particular, demonstrated that everyone can live in the community and there are no exceptions to this. In fact those with the most complex needs are found to make the most gains from supported, community living. That is why the statement of Minister McGrath is so mistaken.

The process of de-institutionalisation is undoubtedly challenging. Supporting the move of individuals, who have sometimes lived for 40 or more years in an institution, requires careful planning. A commitment of resources and support must be made. Independent advocacy is needed now more than ever to ensure that the voice, the will and preference of the men and women who live in such institutions is articulated and respected.

Families are concerned that a move to community living will mean a reduction in support and that the de-institutionalisation process is a way of cutting costs. These fears are understandable. Political leadership is required to give reassurance and effective communication to unpick these fears. The Taoiseach admitted in the Dáil that “communication could and should have been better” in the case of St. Mary’s.

The ‘Programme for a Partnership Government’ set a modest target of moving one third of the 2,725 people in these so-called congregated settings by 2021. This is not a time to roll back on this promise but a time to deliver. Even if met and sustained, that rate of de-institutionalisation will mean that we will miss the original target date by 13 years. For some people this will mean that they die in these institutions.

Sarah Lennon is Training and Development Officer with Inclusion Ireland