After Aras Attracta, de-institutionalise!

By Niall Crowley.

Political and media outrage is strangely hard to direct and seemingly impossible to sustain. There was a lot of it about, though, when ‘Prime Time’ did its exposé of Aras Attracta in Mayo and the inhumane treatment of people with intellectual disabilities there. The Taoiseach led the way with: ‘This was frightening, sickening, infuriating…people legitimately asked question how could this happen in 2014 with trained nurses, healthcare workers” and “…it was not an example of care; it was an example of control over fragile, vulnerable, voiceless people”.

The outrage had already waned when, only a few days later, HIQA inspectors found that residents in the Redwood Extended Care Facility in Meath did not have freedom to exercise choice and control in their daily lives. They reported a high level of restrictive practice and restraint used in the centre, including locked doors and residents confined to specific rooms, sometimes for significant periods of time. Physical restraints included the enforced removal of residents to designated areas of the centre, and a number of staff physically holding residents in a position, sometimes for long periods.

No doubt there will be some resurgence of outrage when the numerous investigations into these facilities finally conclude. The outrage, however, was not only temporary. It was also misdirected. All the debate was about staff – the need to punish them; about administrators and the need for them to resign; about getting surveillance and CCTV cameras in all locations; putting in place advocacy and independent confidential recipients. No politicians or journalists, in their outrage, made reference to Article 19 of the UN Convention on the Rights of all Persons with Disabilities.

Article 19 is inconvenient. It commits States to recognise the “equal right of all persons with disabilities to live in the community, with choices equal to others”. It gets even more inconvenient: States are required to take steps to ensure people with disabilities “have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement” and to ensure they “have access to a range of in‐home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community”.

It is not surprising that deinstitutionalisation didn’t get a mention, given the almost complete lack of progress on this. The HSE currently has a target of moving 150 people with disabilities each year from what are called congregated settings. Even this minimal target is not being met, with only some 100 people with disabilities moved last year. This lack of progress is despite a target set in 2011 to move all people with disabilities from these congregated settings within seven years. At that time there were 4,099 people living in such facilities.

Outrage didn’t allow for any analysis of the root causes of what was happening at Aras Attracta or the Redwood facility. Nor are these isolated incidents. The ‘Prime Time’ team analysed 420 HIQA inspection reports on disability services and found that less than 2% of them were compliant with the required standards.

Institutionalisation strips people of their human dignity. It enables abuse and inhumane treatment. Dr Andrew Power of the Centre for Disability Law and Policy in NUIG notes that: “Residential institutions worldwide have increasingly been found to create high-risk environments for abuse and neglect”.

Useful indignation would have demanded an end to institutional settings for people with intellectual disabilities. It would have explored the lack of deinstitutionalisation as well as the manner in which the very limited deinstitutionalisation is being implemented.

Deinstitutionalisation to date has largely involved the transfer of people with intellectual disabilities from institutions into community group homes. Such community settings can merely reproduce institutional cultures and continue to deny choice to people with disabilities.

Power’s research found that there is “less personalisation and poorer outcomes for persons in community group homes compared to other family and personalised arrangements”.

The failure to promote deinstitutionalisation or to create personally supported settings in communities where people with disabilities are in control of their lives and have choices merits sustained outrage.

It is a gross abuse of human rights and its remedy is not even on the agenda. •