I move:
That Dáil Éireann:
–conscious that there is a serious shortfall in the practical provision of support and services to the many thousands of people with intellectual, physical and sensory disability, their advocates and carers;
–noting that the annual funding targets identified as essential in the report 'Towards an Independent Future' have not been reached;
–aware that despite two grants of capital allowances totalling £9.325 million, there are still considerable waiting lists for aids and appliances;
–noting that there is a regional imbalance in the provision of services;
–taking account of the unprecedented Exchequer returns and conscious of the serious moral obligation that the Franklin Delano Roosevelt International Disability Award places on us to continue the momentum for change, particularly before the start of the new millennium;
calls on the Government to provide the funds needed to enable:
–the making up in 1999 of the shortfall in funding identified as essential in the report ‘Towards an Independent Future';
–a substantial reduction of the waiting list for respite and residential care;
–the expansion of personal assistance services;
–the enabling of more resource centres countrywide for persons with physical and sensory disability;
–the provision of education in an appropriate setting with the needed support services for each child with a special need;
and demands that the Government produce before 30 June 1999 a fully costed programme to achieve the objectives of the Report of the Commission on the Status of People with Disabilities, ‘A Strategy for Equality', within a new specified timeframe.
Since this House last debated a Private Members' motion on the needs of people with intellectual, physical or sensory disability, Ireland received the Franklin Delano Roosevelt International Disability Award. The Secretary General of the United Nations, Kofi Annan, presented the award to President McAleese earlier this month. It would be useful to remind Members of what the UN Secretary General said at that time about Ireland and our attitudes to people with disabilities. He stated:
Central to the UN World Programme of Action concerning Disabled Persons is the goal of full and equal participation by persons with disabilities in all aspects of life, regardless of the level of development of their country. Today, we honour Ireland and its people for reaching farther and doing more in the pursuit of that goal.
Ireland has been setting the pace in the cause of the disabled in many ways: by creating a Minister of State position with responsibility for disability and inequality; by enacting an Employment Equality Act which outlaws discrimination in employment against a number of groups, including people with disabilities. Just as importantly, Ireland has led the cause of the disabled on the international level, particularly in the European Union where it has promoted new and expanded measures to ensure Europe-wide equality for the disabled.
We are well aware of how deserving you are of this reward. It is my hope that other nations will look to you and learn of the great promise that exists for every society in empowering the disabled among their people and enabling them to make the most of their lives. I am confident that you, too, will inspire other nations to recognise that the cause of the disabled is a cause that nobody can afford to ignore.
Since the UN Secretary General made that speech, two other significant items of legislation were enacted or introduced in this House. They are the Equal Status Bill, Second Stage of which we debated here last week, and the National Disability Authority Bill, which completed Report and Final Stages recently. This seems to be an impressive record.
It appears that the legislative equality agenda, which seeks to empower and enable people with disabilities to achieve and exercise their economic, social, political and civil rights, is all but complete. If that is the case, however, why is there need for a Private Members' motion in the House this evening which notes the shortfalls, the waiting lists and the regional imbalances in the provision of services? If Ireland has reached farther and done more, if Ireland is setting the pace and is an inspiration to others in the cause of people with disabilities, why do we need to debate these issues here? We need to debate these issues because we need to remind ourselves, and particularly the Government which is charged with responsibility for managing the economic well-being of the country, that legislation, while vital and welcome, does not have a world-changing effect on the lives of people with disabilities unless their basic needs are first satisfied. The motion tonight is about basic needs.
People with physical, sensory or learning disabilities, their families, advocates and carers, for far too long have heard words like "mainstream", "integration", "empowering" and "enabling", but what have they experienced and what do they continue to experience? They experience marginalisation, exclusion and powerlessness.
It appears from the Government's amendment to this motion that there is, sadly, no will to provide these basic needs. The Government's amendment is mean-minded and self-congratulatory in tone. It does not take account of the fact that this Government, more than any other in recent years, has at its disposal resources which could, with political will, shorten the timeframe set out in the report, Towards an Independent Future, and the strategy for equality. These could make an enormous difference to the lives of people with disabilities.
It does not take account of the fact that on Tuesday last, the Transport for All Group organised a demonstration to the Dáil to highlight that, in the words of its own press release, "a form of apartheid currently exists in this country". The Government's amendment does not take account of the fact that people are still prisoners in their own homes because there is no accessible transport available to them. It does not take account of the fact that the Government's programme, An Action Programme for the Millennium, in the preamble to its section on people with disabilities, states:
Fianna Fáil and the Progressive Democrats in Government are committed to radical change to ensure that the needs and the aspirations of people with disabilities, their families, carers and advocates, are comprehensively addressed. We are committed to ensuring that disability is placed where it belongs, on the agenda of every Government Department and public body. Our policy is based on the core principles of promoting empowerment through appropriate, accessible and responsive services.
They were fine words with which we could all agree. In the same chapter under the heading "Key Priorities" the Government promises the introduction of a co-ordinated and comprehensive approach to promoting access by people with disabilities to the use of public spaces and facilities and to the range of public transport.
Two years into the lifetime of the Government we are being asked, in the words of the Government amendment, to approve "The Government's commitment to put in place an enhanced level of service provision [as it now calls it] outlined in the programme for Government". How can the House approve the Minister's amendment when the Government's track record speaks for itself? How can we approve of the Government's commitment when the Exchequer funded 150 buses, none of which are accessible to wheelchair users?
The enactment of the Equal Status Bill would have made it impossible for the Minister for Public Enterprise to order new buses which are not accessible to wheelchair users. Unfortunately, the introduction of the Bill came too late for those already excluded. Even if we had fully accessible public transport some people would still be trapped in their own homes. Even if we had enacted the Equal Status Bill they would be excluded from full participation in many aspects of life. Despite the Employment Equality Act, these people, sadly, will not be competing for jobs or taking advantage of the booming economy.
The Irish Wheelchair Association recently estimated that 2,667 of its members do not benefit from day activity or development. Of these people, 1,248 are totally physically isolated, in short, they are prisoners in their own homes; 1,153 still require aids and appliances and 1,375 require personal assistance with basic needs such as dressing and feeding. How can legislation help people to participate fully when they cannot even get out of bed without a hoist which they may not have? How can legislation protect the rights of these people to be considered for a job when they cannot get dressed without an assistant which, in many cases, they do not have? How can we justify the fact that, despite Ireland's legislative record and the booming economy, there has been little or no investment in personal assistance schemes for people with disabilities? How many more thousands of people, who are not members of the IWA, require services which are not provided? How many more members require such services but are not on a database?
This motion was designed to unite, not divide, the House. Two motions in the past seven or eight months have called on the Government to provide additional resources for the provision of services to persons with intellectual, physical or sensory disabilities. On each occasion the Minister and the Government did nothing but congratulate themselves on having provided a few resources. We accept that they can point to improved levels of services in some areas. However, the consensus in the House must be that we should do more and do it now.
Ireland received a prestigious international award and has been cited as having set the pace for change. Why can we not agree to speed up that pace? Why do we continue to take things slowly when the need for change and the reasons for making such change are self evident?
The motion asks the Government to take stock; to provide additional money; to accelerate the rate of change in tangible and practical ways; to make changes which will allow people to take advantage of educational and employment opportunities and to improve the quality of life for people with disabilities in real and practical ways. We need a new timetable for change. We need legislative change but, most importantly, we need practical change.
Some of the changes may be small, such as more personal assistance services, more aids and appliances, more residential and respite care and more day resource centres and services. This is the policy at a macro level and we are making progress at legislative level. However, at a micro level people are still living lives of desperation and despair because of a lack of basic services.
A sentence from the report "Towards an Independent Future" will assist in setting the scene for this debate. Dr. Ruth Barrington wrote on behalf of the review group that: "The main thrust of our report is the development of services to enable people with a physical or sensory disability to live as independently as possible in the community". Key issues in the submission to the review group highlight deficiencies in the system, which should be designed to achieve the objectives outlined above – enabling those with disabilities and giving them independence.
The submission to the review group highlighted a lack of comprehensive data on the numbers and the services needed; inadequate access to information on service provision; disparities in eligibility criteria between and within health boards; inadequate statutory funding for individuals; uncertain funding of voluntary organisations; shortfalls in services relating to therapy, day care, counselling and home support; uneven geographic distribution of services; inadequate transport services; inadequate co-ordination of services and poor consumer choice. Would the Minister not agree that this is a litany of disaster?
However, the situation is not hopeless. By producing a fully costed programme to achieve the objectives of "A Strategy for Equality" in a new, specified timeframe, the Government could make a real difference to the lives of those with disabilities.
Every day the parents of children with an intellectual disability face the painful reality that their children's quality of life will always be decided by others. Far from being the beneficiaries of a comprehensive and seamless service, parents and families may face a lifetime of struggle and delay. One of the submissions to the Commission on the Status of People with Disabilities, quoted in the report of that body, "A Strategy for Equality", graphically illustrates this point. A parent states: "It appears to us that the parents of a disabled child face a lifetime of fighting each and every agency and Department for their rights and those of their child."
The Department of Health and Children's document "Services to People with a Mental Handicap/Intellectual Disability – An Assessment of Need 1997-2001" added a new dimension to the development and planning of comprehensive services for people with a mental handicap. It comprehensively describes the essential needs of those with mental handicap. The intellectual disability database identifies 26,694 people with a mental handicap or intellectual disability. Of those, 604 people receive no service from the State and 22,804 receive some service. Of the 26,694 men, women and children, 1,439 – one person in every 20 – are waiting for residential and respite care and 1,036 are waiting for the provision of day care. It is constant waiting. Analysis of the data shows that, due to medical advances, the adult population in the database has increased by 31 per cent since 1974. Of the 26,694 people on the database, 61 per cent or 16,453 are aged 20 or over and, of those, 8,283 are aged 35 or over and 2,203 are aged over 55. The Department of Health and Children states that the average age of those requiring residential placement is 31.6 years and those requiring day places is 35.9 years.
If we do not provide those essential residential and day places, who is doing the work? The principal carers of persons with mental handicap are their parents. The age profile of those identified as requiring a service has a significant implication. Elderly parents are caring for their middle aged and older sons or daughters. Parents in their 70s and 80s are looking after their adult mentally handicapped sons or daughters. For all of them, apart from the daily physical and emotional demands made on them, there is the fear of what will happen to their child if they die or become incapacitated. We claim to value our elderly people. The Minister for Finance said he had concentrated resources in this year's budget on pensioners, but where are they?
Based on the figures above, it is clear that over 8,000 old age pensioners care for a dependent mentally handicapped son or daughter and give everything they have left every day to care for their handicapped child because there are no day centres and no respite care. What has the Minister done for them? Will the welcome increase in their old age pensions relieve the pressure of caring? Will it provide the residential, day or respite care they desperately need for their children and themselves? Will it end the sleepless nights and provide peace of mind? We know the answers to those questions are in the negative.
While it is true the Government has allocated some resources to assist with the scandal of the waiting list for respite and residential care for those with an intellectual disability, much more needs to be done. In a letter to my colleague, Deputy Shatter, the Carmona Parents' and Friends' Association summed up what it sees as a crisis in the provision of services for people with learning disabilities in south-east Dublin and east Wicklow. The letter explains the association requested £7 million to deal with waiting lists for residential, day, crisis and respite care. The Minister for Health and Children allocated it £252,500. It pointed out that this will provide five residential places and six day places in 1999 but that its waiting list is much longer. It needed 92 residential places, 180 respite places, 25 crisis places and 17 day service places. Surely that should have been taken into account. Unfortunately, bad as that experience is, it is not unique. A new, real and meaningful timetable for funding with an accelerated pace would reassure those people that practical help is on the way.
The House will debate the Bill on the Statute of Limitations tomorrow. We have recently concentrated on the abuse of children in the care of the State in industrial schools and orphanages. We are rightly outraged by the pain and suffering people have undergone. We would also be outraged if we thought large numbers of people were still suffering abuse and neglect. We should be outraged. There are large numbers of people suffering neglect by the State. They are people with disabilities and we are still abusing their rights. We continue to do so when we do not provide the necessary resources to allow them to avail of day care, respite care, special education, personal assistance and aids and appliances.
I remind the Government what President McAleese said when she accepted the Roosevelt International Disability Award on behalf of the people of Ireland:
While we feel privileged and pleased to be the recipient country, we know that this award carries with it a serious moral obligation to ensure that we maintain and accelerate the momentum for change in disability related policy and service provision.
It places a moral obligation on us if we are to be worthy recipients of that award to provide the necessary additional resources. Later in her address the President said:
We have failed our people with disabilities and, in the process, seriously damaged our society. How much talent has been wasted because people with disabilities have not been given the opportunities and means to develop their gifts? How much genius has been lost forever to our world because of this? That loss has not only been a personal tragedy. . . it has also immeasurably impoverished our society.
I commend the motion to the House. The Government should help enrich society, not just by introducing legislation but through real and practical service provision and it should be done sooner rather than later.