It's time we set people free from institutions
In his 50s, Martin Dooher learnt to do all the things that he was told all his life he couldn't do. Everyone deserves the same freedom, says Brendan O'Connor
Published 27/09/2015 | 02:30
Martin Dooher is from Ballina, Co Mayo, but he went to live in an institution in Cork when he was eight because his parents though t that was the best place for him. At 16 he moved to Galway to another institution, and then in his twenties he was moved into a group home. In all of these situations Martin was cut off from the community at large and lived in a group setting where he was not, by and large, allowed to make his own choices and he was not allowed to take any minor risks. He was told when he could take a shower, when to eat and when he could and couldn't make a cup of tea.
Martin would have liked to have watched the football on a Saturday afternoon but he couldn't, because he had to go shopping with the others from the home. Martin didn't like it when they all went out together because people stared. They didn't see Martin so much as an individual, maybe, rather as just a person with a disability, out with a bunch of other people with disabilities. Set apart from everyone else by their togetherness.
Martin moved into his own apartment five years ago. In his fifties, for the first time, he learnt to be independent, even to take risks, while also learning to be safety-conscious. The transition wasn't easy, but Martin now does all the things he was always told he wasn't able to do.
Martin makes his own food when he wants now. He cooks for visitors when they call. He does his own laundry, manages his own medication. He has a home, and he has a life that has choices, autonomy and purpose. Martin is not afraid of the world outside anymore. He is part of it. Martin can also do things that lots of you can't do, like speak in public. Martin has travelled extensively in his capacity as an advocate for people with intellectual disabilities. He is also part of the steering committee of the Next Steps Project. This is a project run by the National Association of Voluntary Bodies, the aim of which is to help more and more people move out of institutions, by sharing and learning from the experiences of those who make the move.
Alison Harnett, the project coordinator of Next Steps, has an enthusiasm for and an engagement with her job you rarely see. When you talk to her she is falling over herself trying to tell you all the amazing things she has learnt from being immersed in this area. It is, she warns, a complex area. But there are some things about it that are very simple. Like this for example: No one needs to live in an institution. In fact, people with more complex needs can actually get much more out of moving out of an institution. So, with loads of other people around the country, Alison is working away quietly, person by person, on getting individualised supports in place for people so they can be supported to live "a life of their choosing". Alison and others track the stories of people like Martin to learn lessons to help more people escape.
"A life of their choosing." Such a simple but such a powerful phrase. And how alien a notion compared with how we have traditionally regarded people with intellectual disabilities in this country. Traditionally, as we know, we have put these people into institutions, charitable institutions generally. They were infantilised and they were made feel they existed at all only by virtue of our generosity, the generosity of charity or of the State. They were denied choice, the very essence of a meaningful life, and they were forced into a routine that suited the system rather than them. They were ushered around with other 'people like them' who may not have been like them at all. They lived with 'people like them', whether they liked those people or not. And of course we know that that dehumanising process was not the worst of it. Because people in institutions were so disempowered, they have also been very vulnerable to all kinds of abuse, physical, emotional and sexual. They were treated as sub-human beings, and no one ever considered that they deserved anything like the kind of life the rest of us have, a life with purpose and meaning and choice. They were never treated as individuals with individual needs and interests really. They were medicalised and managed; their needs looked after maybe, but nothing beyond that. They were treated as you would a pet in many ways, or at best they were treated like children. This culture existed cheek by jowl with a general culture where we all regarded people with intellectual disabilities as slightly sub-human, set apart from all of us, and not entitled to dreams, aspirations or choices.
The answer to the problems in institutions right now is seen as pumping hundreds of millions into "fixing up" these institutions, something that has appalled people like Martin Naughton of the Centre for Independent Living, who has devoted his life to trying to free people with disabilities from institutions.
But quietly, behind the scenes, there is something else going on. One by one, people are being set free. And they are embarking on real lives of real meaning, where they are more engaged with their families and their communities, where they are individuals in these communities rather then being one of that bunch of handicapped people who live in that institution or group house that everyone knows, a place that is on the margins. They are individuals rather than one of that gang people see going on outings together in the minibus, for a walk, or bowling, or to the cinema or other low-risk activity.
On Tuesday, Martin Dooher, who now has a Wii in his house for his entertainment, and who watches the football when he feels like it, will speak at the launch of Next Steps: The Journey So Far, which details the experiences of a wide range of people who have moved out of congregated settings aided by individualised supports. The report also examines some of the lessons we can learn from their experiences.
As Alison Harnett says, it's complicated. For example, families can tend to be a bit of a barrier to people moving in on their own. One mother goes from saying her daughter will move out over her dead body, to delighting in her daughter's new-found independence. And it is understandable that families would be wary. Their relatives are going from a very safe environment with round-the-clock care to a less secure place, a riskier place, a place called the real world. It's not easy for staff either. These are people who are used to supporting people in one particular way, with certain rotas and work practices, and it is challenging for staff as well to move outside the institutional environment.
There are difficulties too with housing. There are the same difficulties as there are for the general population, finding somewhere and accessing rent allowance etc., and then there are specific difficulties like the fact that houses may have to be inspected by Hiqa before they can be moved into and most landlords aren't really prepared to wait around for months for this to happen. There can also be problems with unbundling funding for the individual. Some 8,000 adults with intellectual disabilities currently live in institutions in Ireland at a cost of €900m, which works out at over €100K per annum per person, so you would imagine that if the money that is poured into institutions could be unbundled and devoted to individualised supports, it would ultimately cost less for these people to live more normal, engaged lives in the community. The Government is proposing to pump another €450m into these institutions in the next five years, which disability campaigners have described as a kick in the teeth.
The message of the Next Steps report is that it is possible to get people with even acute needs living lives of their choosing, and it is happening. And just imagine if we could be remembered as the generation responsible for granting the human right to a meaningful life to people with intellectual disabilities. Let's hope we will be remembered as such, as the ones who set people free from institutions to live lives of their own choosing, as complex and challenging as that life, and all our lives, can sometimes be.