Seanad Éireann - Volume 148 - 19 June, 1996
Adjournment Matters. - Independent Living Fund.
Mr. O'Kennedy Mr. O'Kennedy
Mr. O'Kennedy: I am privileged to be here as a nominee of the Irish Wheelchair Association and in that capacity I speak on behalf of the Centre for Independent Living. I became aware of this movement because of my association with the Irish Wheelchair Association but particularly because there is a very active centre for independent living in my constituency in Thurles under the driving determination and guidance of Mr. Jim Casey. It is one of the most positive things that has happened in Irish society in recent times.
Fifty years ago people with disabilities were looked upon as different. They were people who had to be cared for, provided for and were dependent on what we could do for them. That may have been acceptable to earlier generations but with enlightenment, we have come to appreciate that that is not the full story. It is not even the beginning of the story because each person with or without disability is entitled to fulfil his or her aims and priorities independent of the rest of us.
There is a lovely Irish expression — Ar scáth a chéile a mhaireann na daoine. We are dependent on each other; we live in each other's shadow. That is fine in the sense of positive dependence on each other but the significant thing about this movement is that, for the first time, people with physical disabilities are determined to make a positive contribution not just to their own development but to the development of society. I want to bring to the attention of this House the significance of this movement and the potential that is there for the betterment of these people but also the active contribution that they can  make to society. It is no longer the case that we can tell them what is good for them and that they depend on us. We want to promote their independence; they want to promote their independence. While our good intentions will always be appreciated, the time has come when their intentions should be considered.
In the mid-1940's there was an outbreak of polio and TB. The people who contracted those illnesses were not distant unknowns; they were the kids next door or the young adults in our households. This meant that ordinary people were affected directly and indirectly by this disability. This led to a positive development in line with other positive developments in Irish society — the arrival of the rehabilitation era and the desire to help people so that they could be fully integrated into society.
That drive was underpinned by the growth of the charity movement and many of our major disability charities were founded in the early 1950s and 1960s. I pay tribute to them for the great work they did. During that time, there were cures for TB and polio and I pay tribute to all who were involved. At that time curing people was the focus, perhaps understandably, rehabilitation was all about keeping warm, well fed, giving lots of physiotherapy and some education so that integration would be that much easier when you got “better.” Nowadays people with disabilities have realised that they do not necessarily get “better” in that sense. They get better not only when their physical problem is dealt with but when they are in charge of their lives. Only then will they acknowledge, and they are the judges, that they have got better. Independent living means living like anyone else. It means realising your potential, deciding what you want to do with your life and doing it. There is nothing magical or confusing about it.
Like many of my colleagues I have been stimulated, encouraged and inspired by this magnificent movement. There is a movement of people with disability and they know what is best for  them. It does not matter what we tell them. It is their lives and they should allowed to decide how to run them. In practice, they are involved in the research, development and implementation of their own programmes. Two or three key elements have to be put in place to bring this about and the Government have made a significant contribution in supporting it.
The first key element is the concept of personal assistants, someone who would provide them with physical assistance. That personal assistant would work to the agenda of the person with disability, not my agenda or that of the Minister. Assistance in that sense means a method of working. A personal assistant's role would be to assist the person to realise what they know to be best for themselves, not to provide care. The personal assistant enables a person with a disability to make their own decisions, to be in control of their own life and to be seen in every sense to be equal and as fulfilled as the rest of society.
With the launched of the INCARE programme in 1992, 29 people with disabilities were allowed to employ their own PAs. For the first time they were able to live like everybody else. They were no longer dependent on their families, although they have close ties with them. Incidentally, I am not trying to break that close link or their important links with neighbours or institutions. They were not dependent exclusively. They had the opportunity to stop feeling as if they were a burden and I know this from their communications with me. Instead, they began to feel they had a major contribution to make and having a PA makes a huge difference to them.
This INCARE programme was a massive success and the statutory funding for those 29 leaders was provided by the current Minister for Health, for which I pay tribute to him. He recognised the importance of this and acted on the recommendation of the PA advisory group. Due to the success of the programme, there are now between 200 and 250 people throughout Ireland who would benefit from that service.
 The establishment of an independent living fund is crucial if these people are to reach the potential of their fellow citizens. This fund must be established immediately and on a permanent basis. It would be a secure consumer controlled fund because the person with the disability would use it to employ these personal assistants. “Secure” means that the fund would be permanent and put in place on that footing by the Government.
The Department of Health's report on the advisory group of personal assistants for people with significant disabilities recommended that funding of £5 million should be phased in over a three year period from 1996-98 for the development of all personal assistant services for people with disabilities. I am privileged to propose that an independent living fund be established on a permanent basis. I am sure the Minister's response will be positive but we must continue to highlight the matter. Those who regulate and control the fund should be the people with disabilities who are uniquely equipped to determine how it should be used. When the fund is effective, not only will people with disabilities no longer be seen as an element for which we must provide — far from it — from what I know of the dynamism and inspired commitment of these people, they will probably spend at least as much time looking after us as was ever expected of us looking after them.
Minister of State at the Department of Health (Mr. O'Shea) Minister of State at the Department of Health (Mr. O'Shea)
Minister of State at the Department of Health (Mr. O'Shea): The establishment of an independent living fund is being proposed by some organisations representing people with disabilities as a means of financing the provision of a personal assistance service. This service enables people with disabilities to live independently with the use of a personal assistant.
The provision of a personal assistant service was first made through INCARE, a two-year Horizon funded action research programme run by the Centre for Independent Living. When  INCARE ended in December 1994, the Minister for Health agreed to fund the continuation of this service on a pilot basis to the existing participants pending an examination by an advisory group of the future provision of personal assistance services.
The advisory group agreed that the independent living model can offer a higher degree of social gain to some individuals than the residential model. The group felt that PA services were primarily a matter of income support rather than the provision of a health-social service and, accordingly, recommended that funding should be the responsibility of the Department of Social Welfare. However, it decided not to recommend the immediate introduction of a PA allowance, one of the reasons being that it wished to await the conclusions of the Commission on the Status of People with Disabilities which is examining the issue of income support in detail. The group also explored the option of establishing an independent living fund for full PA services which would be funded through the Departments of Social Welfare, Education and Health but considered that this would be too cumbersome to administer.
In the short term, the group recommended that funding for personal assistance services be provided through the Department of Health except where personal assistants are required for third level education. However, it considered it essential that any independent living scheme be properly structured and administered. Accordingly, the report's recommendations on the provision of a personal assistance service include the matter of funding and the introduction of a procedure to assess the dependency and levels of service needs of each applicant as well as to determine the capacity of the applicant to manage a personal assistant.
The PA service is one element of a much broader range of services required by people with disabilities. As recommended by the advisory group, the provision of personal assistance services is  being examined by the Review Group on Services for People with a Physical or Sensory Disability as part of a review of the broader service needs of people with physical disabilities. Its report will be published shortly. In the meantime the existing personal assistant service will continue to be State funded.
Mr. O'Kennedy Mr. O'Kennedy
Mr. O'Kennedy: I thank the Minister for his response. He has acknowledged the significance of the case I have made. I hope there will be a degree of urgency in having that report not only issued but implemented so that the independent living fund can be established as soon as possible.
Seanad Éireann 148 Adjournment Matters. Independent Living Fund.