For nine years, the only privacy Peter had was a curtain around his bed. He hadn’t wanted to leave home in the first place but had no choice. For nearly a decade he shared a bedroom with three other men, living in an institution for people with intellectual disabilities.
As it turns out, Peter is one of the lucky ones. He eventually moved from that institutional setting and has lived happily for years, with support, in the community. His story, though, is in sharp contrast with so many thousands of others in a newly published report on people with intellectual disabilities living in institutions here.
There are around 3,500 people in 72 of these places around the country. We’ve all seen them, at least from the outside. They’re usually imposing grey buildings, reminiscent of workhouses.
The Report on the Working Group on Congregated Settings, published earlier this week, received remarkably little coverage, given its contents and recommendations.
This dearth of coverage is despite a conclusion that there is a powerful and unassailable case for taking action. The ethical case for moving these people from what must be horrible lives in these institutions is beyond debate.
The report tells the story of the reality of life for these Irish citizens, most of whom have severe or profound intellectual disabilities, and have been in an institutionalised setting for more than 15 years. Many of them have simply been forgotten by society.
The descriptions of some of the conditions are harrowing. There was one place that has 20 older people with severe disabilities, but only has one accessible shower and two wash basins. The logistics are mind boggling. People simply had to wait their turn to be washed and have their teeth cleaned. In another instance, there was a ward with 10 beds, side by side, with minimal space between, and no curtain dividing them. It’s an unimaginable way to have to live.
In another pitiful revelation, we are told that in nearly a third of the units, residents who are incontinent have to be changed in a communal sleeping or day area. Just think about that for a minute, and the absolute indignity of it. Even if you are changing a toddler’s nappy you find somewhere private, not just for the sake of the child, but also those close by who would have to witness and smell.
All of this awfulness is compounded by the fact that one-in-three of these people had no contact with family in the previous six months.
It appears that, for many, their days are spent in awful monotony, with little or nothing to do to pass the time. They don’t even have the most basic therapies or activities. They are cared for mostly by nurses in a environment far closer to an aged hospital than a comfortable home.
Unsurprisingly, staff expressed concern at the conditions under which they had to work, and their inability to respond to the needs of their clients and to treat them with dignity.
Needless to say, it is quite extraordinary that these homes are not yet subject to official inspections. It is truly shameful that this situation regarding institutionalised care was not addressed when we had the resources.
This current manner of caring, and I use the term loosely, is sharply at odds with our stated policies. It is in breach of UN conventions, and also at odds with our stated approach in Irish disability and equality legislation.
The National Disability Strategy, launched in 2004, includes the Government’s commitment to ensure full and equal participation of people with disabilities in all aspects of life in Ireland.
It’s an understatement to say we are behind the curve in this area. It’s remarkable that there is the need to even to state that these people should be supported to live full, inclusive lives at the heart of family community and society. The group raises the interesting notion that neither those who fund or provide services “own” people with disabilities, nor should they exercise control over their lives simply because they use their services.
Going back to Peter. In his case, he was helped to get a job in a pub counting the money from vending machines. “It felt good and people thought of me differently,” explained the Dubliner, who uses a wheelchair that he can’t propel himself and communicates using a board with symbols.
Following that success, he moved into a house in the community where he has lived happily for the past 16 years. He likes to visit the library, put a bet on in the local bookie or go to the church to light a candle. Contact with his family, he says, has greatly improved.
Those still stuck in institutions can only hope that the Government will have the political will to ensure that they should all be closed within seven years — which is what the report has urged. But if you’re lying in a bed in a horrible old building, drugged to the hilt, surrounded by others like you with no privacy, no visitors, no therapies, less than basic washing facilities, and no activities, it’s a long time to wait.
Written by Allison O Connor – Irish Independent July 2nd 2011