"Independent living is not doing things by yourself. It is being in control o how things are done," explains Hubert McCormick(34), who now lives in an apartment, a one-bedroomed mews in the grounds of the institution where he has lived for almost 15 years.
Hubert is one of a number of people who have moved out of institutional care and into their own homes with the aid of personal assistants through a programme initiated by the Irish Centre for Independent Living (CIL).
The Centre for Independent Living is part of a world-wide movement that encourages disabled people to hire personal assistants (PAs) so that they may determine their own lives. The movement originated in Berkely, California, and since the early 70s has spread throughout the world.
"There is definitely a stigma attached in living in residential care," says Hubert. "if a disables person lives in residential care there is an assumption that he wouldn't live on his own, when really it is more of a case of the poor allocation of resources. One of the hardest things to do in residential care is to invite people back - the first impression they get is of an institution with its' bell, its rules and its smells, with doors banging and people walking into your room without knocking." For Hubert, the difference today is immense. "I have my own front door and it feels good. I can say, 'this is my place'."
Florence Dougal never imagined that she was coming to have a place of her own. Like Hubert Florence has a high level of care needs. She uses an electric wheelchair and she has little arm movement. Until she moved out five years ago, Florence had spent most of her adult life living with different family members.
"To be moving out to live on my own at the age of 42 was definitely scary, " she says. "Lots of people said I was daft. How would I cope? But I kept saying to myself that I would cope, that I'd get help from here and from there. After three months I just knew that it was the best thing that ever happened to me, and as time has gone on it just gets better and better. I know that its not going to be all plain sailing and that my PAs will come and go. It would have changed my life dramatically if I done this 20 years ago, but I sure am glad that I have a shot at it now."
Mairead Manton had no doubts that she was ready to move into an apartment on her own four years ago. Because Mairead cannot speak she uses a small laptop machine called a "lightwriter" to communicate.
"A personal assistant is a valuable person, she is not just my arms and legs," she says. "Living in someone's face all the time is the hardest thing. But the struggles are worth it. I enjoy this life even though the responsibility can be heavy at times. I treasure my privacy. Having a PA brings choices into my life, although it really feels like a full-time job organising them. If a PA gets sick or can't come to work, I am really stuck," says Mairead, "The back-up service is shit," she adds. For all of them the stress of recruiting, selecting and maintaining personal assistants is the greatest obstacle to independent living. General difficulties include the low pay (£158.88 a week, before tax, after two years training), no pool of relief PAs and unsociable hours. Men find it very difficult to recruit male assistants.
However, these difficulties are multiplied for disabled people in rural areas. Michael Corbett of Newport, Co Mayo explains: "Isolation, physical isolation, is the main problem. This means that people are miles from services, miles from potential PAs and we are recruiting from a much smaller pool with fewer young workers." Such factors, he says, together with transport difficulties, makes PA work less attractive to mature people in rural areas. In these circumstances it can be difficult to provide a stable service.
"Independent living is a long-term goal," says Michael. "As a strategy to enable disable people to get into long-term employment it will pay for itself. If we are able to get in to employment we can find work in the organisations that are currently providing services for disabled people and in that way influence how those services develop. We can also ensure that the services are properly focused. I think it is important that disabled people get to work in the health boards and other areas that so critically influence our lives. This can only happen if we get the support that we need for independent living. " he says.There are other difficulties associated with independent living for these trailblazers. "Not being able to use the phone at night is a real drawback," says Mairead. Like others with little or no arm movement, she is powerless to do anything once she is in bed. This means that she must have an overnight PA. With a limited allocation of three PAs a week, she says that "nights swallow up most of my hours".
Hubert has 70 hours of personal assistance, which is supplemented by residential care staff from the institution at night and in emergencies. "I did feel nervous when I moved in first. My PA puts me to bed at 11.30 p.m. or so and then I am on my own until eight in the morning. At first when I was alone in the flat I found it difficult to relax enough to go to sleep. I often hear sounds and feel very tense. I am really concerned about fire and about the length of time it would take for help to reach me. It is things like this that keep me awake at night. If I had an overnight PA it would make all the difference."
"It was really exciting to be among the first disabled people to move out, " remembers Ursula Hegarty. "It was also daunting because we had to become employers. We are called 'leaders' and so we are role models. This is history in the making and hundreds of disabled people have based their futures on what we have achieved. I know that our experiences will have given many disabled people the push to go for what they wanted - a college course, a job, getting out of residential care 0m whatever. We have opened up the way."
These leaders among disabled people see their ultimate goal as being the establishment of an Independent Living Fund. Disabled people could use such a fund to employ their own Pad . This would be preferable to having the funds administered through a Sate or Voluntary Agency. There is concern about the recent announcement by the Department of Health that it was to establish a network of local co0ordinating committees, though health boards, to provide personal assistant services for disabled people throughout the country. Martin Naughton of the CIL, said: "The money that may be provided may be depleted before it gets to the front-line service. We are also very concerned that it might be managed and administered by people who haven't as real insight into PA service requirement.
However, he adds: "It is more than a half-way stage in development by the acknowledgement of the fact that PA service is a good thing and must be funded. That's a long, long way from where we were five years ago or even two years ago. And, of course, as people with disabilities, we have much energy, much time, and much commitment, and above all we have the knowledge and experience to take it the rest of the way."
It has not been easy for any of them. Between them they've experienced loneliness, fear and an and anxiety. They've had to hire and fire people. They've been mugged by strangers, insulted by their new neighbours, they have had to deal with their PAs turning up for work drunk, calling in sick, or not turning up at all - one was even robbed by a PA. But not one of them would go back. They say it's the difference between "really living and merely existing".