The Report of the Commission on the Status of People with Disabilities will be the cornerstone of future Government policy in the area of disability. Never again will any policy-maker believe it is possible to see disability as a problem that can be dealt with by kindness or charity. Never again will any policy-maker be able to see disability as a medical problem to be dealt with in hospitals and institutions. Never again will any policy-maker be able to treat disability as a minority issue or as a nuisance.
The commission was required, among its tasks, to examine the current situation of people with a disability and the organisation and adequacy of existing services, both public and voluntary, to meet their needs; to advise the Government on practical measures necessary to ensure people with a disability can exercise their rights to participate, to the fullest extent of their potential, in economic, social and cultural life; and to make recommendations setting out necessary changes in legislation, policies, organisation, practices and structures to ensure the needs of people with disabilities are met in a cohesive, comprehensive and cost effective way.
The report deals comprehensively with the position of people with disabilities in Irish society. It examines a wide range of issues which impact on their lives and makes a total of 402 recommendations aimed at improving the position of people with disabilities, their families and carers in society.
The report is in essence an equality strategy which will, if implemented, set about removing the barriers which stand in the way of people with disabilities who want to live full and fulfilled lives. This equality strategy involves legislative solutions, proposals for new policy initiatives and new structures for the delivery of quality services within a framework of rights, not of charity. The report has developed a model of service which places the user of the service at the centre of the process of service delivery, from the planning stage right through to implementation.
The report has a number of great strengths. First, it represents and brings into sharp focus the views of people with disabilities. In the past there had been reports about disability, but the real experts — people with disabilities, their families and carers — had not been consulted or involved. When I established the commission, I decided a clear majority of its members should be people with disabilities or their families. Therefore, it was predominantly drawn from people with direct experience of the way in which disability can impact on a life or on a family.
One of the first decisions the commission made was to engage in an extensive consultative process with people with disabilities, their families and carers. A key part of this process was in the 30 listening meetings held throughout the country, where the views of people with disabilities, their parents and carers and other interested parties were carefully recorded. An invitation to present submissions constituted a second element of the consultative process. In response some 600 written submissions were received. The consultations produced an outpouring of anger, not, let me hasten to add, at the commission but at a society that excludes people with disabilities from almost every aspect of economic, social, political and cultural life. People with disabilities told how they are frustrated, marginalised and denied much of the access and opportunity that people without disabilities take for granted. They suffer from fragmented services, exclusion from planning, lack of basic information and above all, from misunderstanding.
The commission brought together its submissions in two volumes. One volume outlines the main concerns expressed about policy and service delivery; the second volume documents the life experiences of people with disabilities, their parents and carers who chose to tell their stories to the commission in the hope of securing change. Those two documents constitute a very powerful account of the changes required in society if people with disabilities are to move in from the margins.
A second great strength of the report lies in the decision made by the commission members at a very early stage, where effectively they decided that if people with a disability are equal citizens of Ireland, then they are equal with each other too. It would have been very easy for the commission to approach its work on a factionalised basis, with members lobbying for the disability they knew best. Instead, they have learned and worked together, ensuring that parity of esteem across the range of disabilities is one of the key features of the report. The third great strength of the report lies in the united and totally coherent approach of its members. Many of the 402 recommendations are radical and far-reaching, many of them call for a fundamental shake-up of important institutions, some of them are controversial, but there is no dissenting voice, no minority report. The civil servants, the Departments of State, the agencies, service providers and people with disabilities all speak with one voice here.
These three great strengths make this report unique and historic. It means that for the first time, people with a disability are speaking with one loud, clear and insistent voice which is saying that the bottom line is that disability is, fundamentally and above all, an issue of rights. People with a disability have a right, an entitlement, to live full and independent lives to the maximum of their own individual potential. After all, that is no more and no less than the basic right any citizen would rightfully demand.
The clear difference between this and previous reports is in the insight that disability is a social issue, not a medical one. People with a disability are not sick or unhealthy. If a building refuses to admit a person in a wheelchair, that is the fault of the building, not of the person. If a person who is blind cannot pursue a third level course in literature, that is the fault of the system, not of the person.
Until we come to a full realisation of the social nature of disability, we will continue to treat people with disabilities as people who have a medical problem. They do not, however. Where disability is concerned, the right to a full and independent life is constantly interfered with by barriers society creates: barriers of ignorance and prejudice; barriers of cost; barriers of structure and inadequate service delivery.
The challenge this report puts in front of us all is to begin the task of tearing down those barriers. The report tells us that the time has come, if it is not long overdue, to move to a view of disability that is based on rights, not charity.
The commission's report deals comprehensively with the issues facing people with disabilities. One of the single largest areas of concern raised with the commission was the question of access and transport. The report states:
Clearly the built environment and most forms of transport are inaccessible for people with disabilities... these problems are not just mechanical ones but ones that have several important consequences. They mean that people are denied full access to education, employment and training, to cultural and leisure events.
The commission also found another major failing to be the lack of information available to people with disabilities and their carers, and the difficulty in obtaining access to entitlements and services. The absence of easily accessible information is clearly a major factor in the isolation and marginalisation experienced by so very many people with disabilities, and their families and carers.
The report found serious concern among the submissions regarding education. A failure to provide comprehensive education for people with disabilities results in their being denied access to employment and training opportunities comparable to those available to people without disabilities. Other areas which attracted a large number of comments in the submissions included employment and training, income support, health and personal support.
Another theme to emerge from the consultations was that of marginalisation. This word took on a stark reality from the hundreds of pages sent to the commission from people with disabilities and their families. Many people with disabilities felt they were being either kept at, or pushed to, the margins of society and were not being allowed to realise their potential or to participate as fully as they are entitled to in every day life.
The report also found that disability can have major implications, not only for individuals who are directly affected but also for those in the role of informal carers. The commission received 100 submissions from family members of people with disabilities. This material was full of strong feelings and emotions, and underlined the point that caring for people with disabilities can be an ongoing physical, mental and emotional strain accompanied by a terrible sense of isolation.
The issues I have mentioned already form the basis for the main elements of the recommendations put forward by the commission. These include:
(i) The introduction of further disabilities legislation to promote equality for people with disabilities in relation to services provided by public bodies, services provided by private bodies, employment and education.
(ii) The establishment of a National Disability Authority to monitor policy, standards and the implementation of the Commission's recommendations. The Commission holds the view that in order to achieve the primary aim of ensuring equality for all citizens, it is necessary to create an executive body to monitor the impact of public policy and services on people with a disability. Such a body should not only be in a position to monitor the system at local level but should have the power to intervene in particular cases in order to ensure equity.
(iii) The establishment of a Disability Support Service. The Commission found existing supports and services for people with disabilities to be poorly co-ordinated and people had great difficulty in obtaining information on entitlements and accessing these from the multiplicity of agencies involved. The Disability Support Service is the focal point of collection and distribution of information. The report envisages establishing a national network of disability resource centres which would be a single point of contact for information, advice, support and advocacy. Support co-ordinators would be trained to guide individuals or their families through the range of services they might need at different stages of their life.
(iv) The centring of responsibility for policy development in one Government Department. To change the lives of people with disabilities for the better requires a concerted and organised response from the whole administrative machinery of this State. The report recommends that the Department of Equality and Law Reform be given prime responsibility for the development, monitoring and implementation of policy for people with disabilities, and be given the necessary resources for its task. To do this to the maximum effect, the Commission recommended that a disability equality unit be established within my Department.
(v) The recognition that people with a disability have a right to income support and such support must recognise that it is expensive, in many cases, to have a disability. The report states research carried out by the ESRI shows that households headed by people who are unable to work due to illness or disability are one of the groups in society most likely to live in poverty and to experience basic deprivation. It calls for a payment to compensate for loss of income due to an incapacity for full time work — a disability pension — and for a graduated payment to meet the additional everyday cost associated with disability.
(vi) The report recommends that the universal right of access for all citizens becomes the overarching principle which guides all relevant legislation, policy and practice in Ireland. It is my view that a completely new approach to the whole issue of access is required in relation to buildings, accommodation, streets, shops, offices, beaches, playgrounds, cinemas and theatres, pubs and sports venues — in other words, all the places we lead our lives.
In tandem with the decision to publish the Commission's report, I secured Government approval for the establishment of an interdepartmental task force, chaired by my Department, to draw up a plan of action on the rights of people with disabilities based on the report. This task force has been operating since January of this year and is due to complete the plan of action around the middle of the year. The task force is also considering, in conjunction with the Commission's report, the report of the Review Group on Health and Social Services for people with disabilities.
The Government also authorised the establishment of a monitoring committee to oversee the implementation of the Commission's recommendations. I launched the monitoring committee, chaired by my Department, on 18 April. It comprises some former members of the Commission on the Status of People with Disabilities, representatives of social partners, a nominee from the National Rehabilitation Board, the South-Eastern Health Board, the Disability Federation of Ireland, Departments and the newly established Irish Council of People with Disabilities. I considered it essential to establish this committee at an early stage. It would also be appropriate for it to provide advice and support to the interdepartmental task force.
One of the key recommendations in the Commission's report is the proposal to establish a permanent Council for the Status of People with Disabilities. In March, the interim council, now known as the Irish Council of People with Disabilities, was launched. There is a need for a permanent independent voice to constantly highlight issues of concern and to ensure that the rights of people with disabilities are never off the agenda.
I was anxious that the council should be established on the firmest footing. That is why, in addition to the £100,000 provided for it in the 1997 Estimates for my Department, I secured agreement from my colleague, the Minister for Finance, to provide a further £200,000 for the council in this year's budget. I have no doubt this sum will ensure the council is set up on a proper professional basis, which is important given the work it has to do.
Another initiative I have taken which promotes equal opportunities for people with disabilities is the establishment of pilot community projects. I have referred already to the listening exercises carried out by the Commission where one of the major problems identified was that of access to information. People expressed frustration about the availability of information. There was a distinct lack of information in appropriate formats and the absence of a single local centre where information needs could be satisfied with the minimum of hardship.
To address these problems, I have decided to set up a number of pilot community development projects aimed at people with disabilities. These projects are being undertaken in Counties Clare and Cork and in Tallaght and Clondalkin. My Department is making funding available for the recruitment of project workers and to meet associated costs. What I would like to see achieved is access at local level by people with disabilities to all information in appropriate formats on issues affecting their lives. I would also like to see if a way can be found to facilitate the active participation by people with disabilities in local area partnerships and other community fora, thus empowering them to influence the decision-making process and to play an active part in their communities.
During the recent Irish Presidency of the EU, I sought to ensure that agreement was reached on a detailed resolution by the European Union of the question of equal opportunities and elimination of discrimination for people with disabilities. It is a source of pride that such a resolution was passed last December.
On the domestic scene, the Equal Status Bill passed all Stages this week. This legislation will provide, for the first time, protection against discrimination outside the field of employment. It deals with discrimination on grounds of disability, among other categories. It is based on the principle that everyone has an equal right to participate in our society. People should not be denied access to services, facilities, or amenities just because of disability. Each person should be treated on his own merits and not on the basis of prejudice or stereotype. The Employment Equality Bill, currently before the Supreme Court, seeks to provide protection from discrimination in the workplace for people with disabilities.
We seek to change forever the negative perception of disability which has existed in the past in certain strata of Irish society. We have made significant progress in this area already. We have made more progress than at any previous time in the history of the State. I am determined to see this work continued to bring about a situation where society will recognise, as a matter of course, that disability issues are issues of mainstream political, social and economic rights. The Report of the Commission on the Status of People with Disabilities marks the first step towards the realisation of that aim.