I and the Fine Gael Party are pleased to support the motion. If the Labour Party had not tabled it this week, we intended to table a similar motion for our next Private Members' slot. The Minister will listen to a Fine Gael Private Members' motion in the other House next week. It is obvious that, at a time of plenty and on the eve of the millennium budget, this nation which considers itself Christian should not forget its people with physical and sensory or mental and intellectual disabilities.
The many issues involved were reiterated during the nurses' strike when I visited hospitals, although the nurses had other things on their minds. The most important issue is the need for respite care services and the elimination of waiting lists for such care. Other major issues are the need for residential day care, aids and appliances and the need for expansion of the personal assistant service, which is in big demand. In the Fine Gael Private Members' motion, which will be discussed next week in the other House, a figure of not less than £100 is mentioned in terms of financial support for carers of people with disabilities.
I thought that at this stage there would be definite figures available regarding the number of people with physical and sensory disabilities. The estimated figure available to me is 140,000, although other speakers mentioned different figures. However, such people cannot achieve what we can achieve in terms of full social, economic and educational integration as equal, independent and participative members of society. Sometimes we do not appreciate that we have the facilities to achieve those goals, but it is not within the ambit of the people who are the subject of the motion.
It was sad to meet representatives of the Irish Wheelchair Association last week who were protesting for the second successive year. For them, the difficulty of travelling is almost insurmountable and it should not be necessary for them to protest annually. The emphasis of the millennium budget in the health area should be on funding the expansion of community based and residential care facilities, their services and requirements.
Senator Ryan quoted from the report, Towards an Independent Future. We do not want that report to suffer a similar fate to other reports. We should seek the implementation of the recommendations in the report by the end of 2000. For example, the cerebral palsy unit in Mungret in Limerick, which does tremendous work, is seeking funding. It relates its needs to those outlined in the report, such as the basic issue of regional child assessment. It also refers to the need to provide 1,600 places nationally for day service facilities for people with disabilities with the objectives of maintaining and improving personal independence, an issue which constantly arises, and mobility and communication skills. They are basic needs. Another issue is the integration of people with disabilities into community life, which should be our aim.
The advisory group, which emanated from the Department of Health and Children, said there should be three different levels of personal assistance. One relates to severe disability, another to care attendants for primary tasks such as washing, dressing and limited assistance with education and the third is respite care, another matter which arises constantly.
The replacement of aids and appliances appears to be virtually impossible. New highly technical appliances are available and we must think in terms of the replacement of old technology. It is difficult to explain to people who tell me their appliances no longer fit and they need replacements that they must wait for months. This is not giving them quality of life and it is not equality. The issue of respite continually arises. There is a need for 100 residential places in dedicated facilities for people with disabilities. The Minister is aware of all these issues because the report for his Department highlighted them.
Senator Ryan referred to NAMHI and the 3,380 people, according to departmental figures, with mental handicap and intellectual disability. It wants phased funding of £40 million in 2000 and £35 million 2001. I will not repeat the details mentioned earlier with the exception of one item which is the most important. The Minister said it is not acceptable that a parent of a son or daughter with a mental handicap should have to worry about who will look after their child when they are no longer able to care for them. He said that he intends to ensure that their fears are allayed. I believe the Minister because everybody would accept that is an extraordinary burden for parents who are ageing. They have had to deal with the situation for many years and they must think about entering the next world and leaving the problem behind. The Minister made his statement in 1997 and I appeal to him to deal with the matter. I hope he will ensure that their fears are allayed. On the issue of aids and appliances for the voluntary sector, because of funding that was brought forward to them, it might be better if any funding for aids and appliances were filtered through the health boards.
There is a need for more small groups concerned with, for instance, blindness or deafness to combine and share facilities. There is a pilot study being carries out in the Mid-Western Health Board. They could join together, share experiences – they would certainly have a better quality of life – and they would have very practical approaches as to how they can deal with their problem.
The Minister is aware of my hobby-horse issue of ADD or ADHD. I am still sad that the report, which will be a year old very soon, has not yet been debated in the Seanad. I would hope that the Minister would prioritise it for 2000 because, the mid-western support group, particularly the pilot group in the Limerick area, have done wonders. I do not know how they survive or how they find the energy to deal with what are nightmare living conditions for parents of children suffering from ADHD.
As we reach the next millennium, the people would raise no dissenting voice if we were to say tomorrow that we will forget about the razzmatazz of having this monument and that celebration. These are all peripheral and passing events. A lasting monument to us in the dying year of this millennium, and in the spirit of the first millennium, would be to prioritise our money. Forget the celebrations. We are already, as a nation, forgetting about going out on New Year's Eve, wanting instead to be with our families, and in that spirit we should be putting our resources into the most basic need – providing a quality of life for people who unfortunately suffer from physical and mental disability.
Minister for Health and Children (Mr. Cowen): I am delighted to have the opportunity to speak in the House on this issue and to welcome both the motion and the amendment. It provides a forum for debate. Dealing with disability issues is unfortunately a relatively recent phenomenon in Ireland where Governments have been involved. As late as 1992, John O'Connell actually started a process which would allow the issues to be scoped for the purpose of devising a framework to address them. This is often forgotten. The State has come very late to this issue. The voluntary sector down the years has been providing the service and the advocacy for people, whether with intellectual, physical or sensory disabilities. They are to be commended and complimented and it is important in this debate to acknowledge that the transition we are moving into now is a new partnership between the voluntary and the statutory sectors.
A framework must first be developed within which we can determine the size and scope of the problem, and how we can deal with not just the need for continuing developments, existing developments, but with historic under-funding of services which have been filled by the voluntary sector. This Government, on its election to office, has dealt with that issue in a way in which no previous Government has. That is only one part of a wider problem.
It is important to make those points. The idea that we are in a settled position that simply requires resourcing does give cognisance to the work that has gone on since the beginning of the nineties under Dr. John O'Connell. It is not within the health services alone that disability issues are going to be addressed. Those who advocate for disability rights have been seeking, for a long time, a move away from the health model of disability. Services need to be mainstreamed and to provide services as a right to people regardless, rather than in a specific, managed way because people are disabled or providing services through a particular department, is not the way in which we are going to improve the disability issues. Therefore, a move away from the health based model of disability and towards a rights based model has been the new policy drive.
There is no question, as Senator Ryan has indicated, of differing ideology. Agreement has been achieved as a result of the work of the establishment groups and the reports that we have on intellectual and physical disability. There is a consensus as to how we are to proceed in ensuring that disability issues get the priority within the public policy framework they deserve and that they have not historically got in the past.
The establishment group for the National Disability Authority was set up in November when we came into office in 1997 and reported to Government in June 1998. The Government accepted the recommendations of the infrastructural arrangements for the NDA and mainstreaming of services are now at an advanced stage with a proposed implementation date of March 2000, which has been agreed.
The changes being introduced will result soon in the relocation of responsibility for disability services from the National Rehabilitation Board under the aegis of the Department of Health and Children to the various Departments and Government agencies with overall responsibility for these services. That change in structure of service delivery is an absolute prerequisite if we are to successfully deal with the agenda that the disability organisations are quite rightly presenting to us on an ongoing basis. As a result of that structural change, therefore, vocational training and employment services, for example, for people with disabilities will be provided by FÁS under the Department of Enterprise, Trade and Employment as they are being provided to other members of the community.
A new mainstream information and support service, Comhairle, is being established under the Department of Social, Community and Family Affairs, and the audiology, psychology and non-vocational services operated by the NRR will be provided by the relevant Government agencies such as the health boards and the new National Educational Psychology Service.
The NDA is being established in conjunction with these mainstreaming arrangements. The authority will be an independent statutory body established under the aegis of the Department of Justice, Equality and Law Reform. Legislation to provide for the new authority, the National Disability Authority Act, 1999, was enacted on 8 June this year. The NDA will be responsible for research and development standards and codes of practice for disability services and for monitoring and assisting service providers to ensure implementation of standards and codes of practice. The NDA will also act as a coherent focus for disability policy and will play a key role in advising and reporting to the Minister in regard to disability issues. It will also facilitate and monitor disability policy and legislation and delivery of services across the sectors and will provide a focus at Government level through its advisory and reporting role to the Minister.
The National Disability Authority will not be involved in direct enforcement, for which a number of mechanisms already exist, such as internal complaints procedures, the Ombudsman's Office and the new Equality Authority. However, the NDA will also intervene directly with service providers and where it is not satisfied with the outcome, it will report its findings to the Minister with recommendations for the review, reduction or withdrawal of funding provided for such services. Interventions by the NDA may be included in the annual report of the NDA which will be published and put before both Houses of the Oireachtas.
The NDA therefore has a key role in monitoring and implementing the recommendations of the Report of the Commission on the Status of People with Disabilities. The Department of Justice, Equality and Law Reform will continue to monitor further progress on the implementation of the commission's recommendations at interdepartmental level. Four pilot community services projects and two pilot community action plans are ongoing, focusing on accessible transport and undertaken by the Department of Justice, Equality and Law Reform.
The backdrop against which the establishment of the National Disability Authority and each of the other developments is taking place is the new legislative framework for equality. The Employment Equality Act, 1998, was brought into effect on 18 October 1999 and prohibits discrimination in the workplace on a number of grounds including disability. This legislation will be complemented in the very near future with the expected enactment of the Equal Status Bill, 1999, which is currently before the Dáil and which will prohibit discrimination in services. Legislation specifically providing for disability has been enacted in education and is proposed for mental health and for accessibility of private housing.
With this framework in place, preparatory work on a rights based disabilities Bill has commenced in the Department of Justice, Equality and Law Reform. It is intended to develop this legislation within the Department in an innovative and comprehensive way to ensure that the many issues which impact on disability and which remain to be dealt with are considered. Constitutional issues may also need to be addressed and this will be an evolving area as the provisions of the anti-discrimination legislation are challenged and developed.
It is important to recognise that the legislative framework is the one within which disability issues can progress. It is as a result of the work and consensus built up between all the disabilities bodies that that structural framework being put in place is seen as a necessary prerequisite for dealing with the issues. That is not to say that one postpones the operational problems that people with disabilities face on a daily basis. It does not absolve the State of its responsibilities to increase funding in this area. The record of this Government will show, on any objective criteria, a far greater commitment by this Administration than any of its predecessors. That is a fact.
I have heard Opposition Deputies, since I became Minister, contend that suddenly, in June 1997, there were unimaginable resources that were not previously available. Let it be remembered by those who propose the motion in the House today that their leader, as Minister for Finance, had before him in three budgets a total expenditure of £40,000 million. The idea that resources suddenly became available in June 1997 is a fallacy, and a politically defensive mechanism by those who did not produce when they were in office. I can refer to the revenue and capital allocations, for physical and intellectual and sensory disability, during the term 1994 to 1997 when there are those who were then in Government who claim to have a monopoly of virtue in relation to this area. I can show clearly, if the Senator so wishes, the relative performance of both Administrations.
Without making that political point, this is an objective financial point that stands on its own merits. In trying to deal with disability issues one is dealing with a different matrix of need all the time. There are emerging needs which are increasing and there is, therefore, a need to see in what way we can accelerate developments. That would be one of the objectives I have as Minister for Health and Children. Quite apart from meeting the recommendations in Towards an Indepen dent Future in terms of the funding they mention there, or the assessment of need report for intellectual disabilities, that in itself is not a static picture but simply a timeframe, snapshot or prediction of need that is changing and emerging all the time.
What we are trying to put in place for physical and sensory disabilities now is something which has proven successful in dealing with the problem of intellectual disability, that is a database to put information on record. That issue will be finalised very shortly. It is only in that respect that we can get away from the perennial debate in which people talk about the resource requirement this year. Unless we acknowledge the historic under-funding of the past, the need to put in the proper planning structures and legislative framework now and unless we scope the problem for the future we will not find the sort of quality improvements that people with physical and sensory disabilities need. I see some of their advocates in the House tonight and I welcome them.
Similarly, in relation to intellectual disability, the fact that we have the assessment of need report has been an important driver in trying to bring forward not just the necessary resourcing but, concomitant with that, the necessary planning that is required, both within the voluntary and statutory sector on a partnership basis to make sure we provide the places we plan for. Unless we do that, we will find that increasing resources will not bring the sort of results we want. The involvement of the voluntary sector is absolutely critical.
Statistical information on the numbers of people with intellectual disability, for example, provided by the National Intellectual Disability Database, in their first report published in 1996, shows that at that time the total number of people was 26,664. The preliminary 1998 data have identified an increase of 1,346 persons. We have gone, therefore, from 26,664 to 28,010 in the overall number of persons on the database. The data reveal an ageing population in the more severe range of disability and higher numbers of young adults and increased life expectancy, thankfully, will mean that the pressure currently being experienced by adult day services will increase as this group ages and requires residential services.
There are, at present, no definitive statistics in relation to the number of people with physical and sensory disabilities – it is hard to believe. Based on population trends in other countries it has been estimated that the number in this country could be as high as 200,000. Towards an Independent Future highlighted the lack of reliable information on the numbers and service needs of people with physical and sensory disabilities and recommended the establishment of a database on the health service needs of persons with physical and sensory disabilities. As a first step the review group recommended the establishment, by my Department, of a database development committee to prepare detailed proposals for the development of such a database. That committee hopes to complete its work by the end of this year and it will pave the way for the putting in place of the database next year.
One recommendation of the review group was that the chief executive officer of each health board should establish a regional co-ordinating committee for services for people with physical and sensory disabilities. Membership of the committee will comprise officers of the health board, the voluntary sector service providers, the representatives of service users – that is, people with disabilities – and the National Rehabilitation Board. I am pleased to say that those committees have been established in every health board and we are pursuing a review of the operation of the committees in consultation with them and the voluntary organisations concerned, the purpose of which is to identify best practice, to encourage a cross-fertilisation of ideas across the regions to come up with solutions to any teething problems which may have arisen, and to contribute to the development of overall national policy.
A major element of the review process was a national seminar which brought together all the participating parties to discuss progress to date and ways in which the operation of the committees could be made more effective. I am confident that that partnership approach will bring about real progress in the planning and delivery of services and we will continue to facilitate that process.
In relation to carers, dealing with disabilities on the health model would be to fail to recognise the contribution that other Departments and agencies and other parts of the State apparatus can make. Carers are an obvious example. People with disabilities living at home require assistance with the tasks of daily living and often the responsibility for care rests with one person principally.
The review group report acknowledges the need to expand and develop different levels of home support services for people with disabilities and their carers and a substantial package of improvements in the carer's allowance was provided in the 1998 budget, and graciously acknowledged by Senator O'Meara. All 11,500 existing carers will benefit from those measures, with an additional 3,300 new carers qualifying for the allowance this year. The total package of those improvements alone in last year's budget amounted to £18 million annually. That is a large additional increase on the existing £45 million spent on carers last year and indicates a substantial commitment to carers and our appreciation of their valuable role in society.
In relation to personal assistant services there have been calls by the Centre for Independent Living for a personal assistance service funded by a designated independent living fund. A full PA service is defined by the Centre for Independent Living as the need for at least 20 hours service per week. The independent living fund is no more than a particular model for funding a PA service. The PA service is one of a range of support services designed to enable people with disabilities to live in the community with the maximum degree of independence. The range includes home helps, home care attendants, respite care, day care, etc. and the object of our policy is to develop the range of services as a whole. The amount of funding to be devoted to the development of this service is being decided in each health board area in accordance with locally perceived priorities. As I have already indicated, health boards decide on priorities for the allocation of development funding in consultation with the regional co-ordinating committees for physical and sensory disability services, as recommended by those who sought to have these services and their delivery improved.
The Minister for Education and Science has put in place a major new initiative in the special education area under which all children in the primary system assessed as having special needs arising from a disability will be entitled to an automatic response to those needs. That is a very important initiative that was taken under this Administration. The Minister considers that this initiative represents a major advance in the education of all children with special educational needs and demonstrates this Government's commitment to the provision of suitable education for children with special needs.
The level and nature of the response in each case will depend on the assessed needs of the child or group of children involved. The response may take the form of a full or part-time resource teacher or child care support, depending on the number of children involved and the nature of their needs. The sum of £8 million has been allocated, over the next two years, for teacher and special needs assistant support under that initiative.
The Minister for Education and Science also reduced the pupil teacher ratio in all special schools and special classes catering for children with mild learning disabilities; children with moderate learning disabilities; children with emotional disturbance; and children with a physical disability. These reductions will bring the pupil teacher ratios in all special schools and classes down to the level recommended by the special education review committee and represent the full implementation of one of the key recommendations of that committee.
In addition, £3.4 million has been allocated over the next two years to facilitate the introduction of escorts on all special school transport services and the provision of safety harnesses on such services when required. A further £800,000 has been allocated over the next two years for the purchase of special equipment for children with disabilities. The Minister for Education and Science is also extending the remedial teaching service to ensure all schools which currently do not have a remedial service will have access to it. I am sure Senators will agree that these measures provide concrete evidence of the commitment from Government to ensuring all children with special needs receive the support they require to enable them to gain maximum benefit from the education system. I assure the House that it is the intention of the Minister for Education and Science to continue to build on the very significant progress which has already been achieved in this area.
Under the disabled persons grant scheme, local authorities may pay a grant for the provision of additional accommodation or necessary works of adaptation to a house to meet the needs of a member of the household with a disability. In the last budget that grant was increased from a maximum of £8,000 where it stood for many years to a maximum of £12,000 – a 50 per cent increase. Far from that being an ideological response it is a practical response to the needs of people who saw that as a simple improvement in an existing scheme which works well but due to the increase in building costs the increased limit was introduced and has been used to great effect at local level.
The arrival on our streets of buses which are accessible to wheelchairs is a major breakthrough in the pursuit of universal access. These buses are being operated currently by Dublin Bus on the No. 3 route. They are also being piloted in Cork city by Bus Éireann. At the request of my colleague, the Minister for Public Enterprise, Dublin Bus is preparing a broad programme of trials of possible low floor buses. Depending on the results of these tests, Dublin Bus should be in a position to begin ordering accessible double decker buses from 2000, another bone of contention – a basic need which was being sought by disability groups and progress can be reported in that area. In regard to my Department, many of the services for people with disabilities are provided by agencies in the voluntary sector. Very often the provision of services was in response to demands for services from their own members. Some of these services could be funded from fund raising income but not all and a situation developed over a period of years where services were not fully funded by the State. In recent years with falling income from fund raising some agencies have been running services at a loss and building up debts.
One of the basic recommendations of the review group was that existing services be put on a firm financial footing in order to provide a sound basis for future development – an important point on the development of services. Existing services must be put on a sound financial footing and improved as we go along, not for the purpose of postponing increased resources but of ensuring that we do not end up building further blocks in a house without ensuring the foundation is sustainable in the long term. Within months of coming into office, this Government provided by way of a Supplementary Estimate £5 million to eliminate accumulated deficits of those agencies. These issues were brought before the previous Administration but fell on deaf ears. To help eliminate the ongoing under funding of services, £2.4 million revenue was provided in 1998 and £6.4 million this year.
One of the areas singled out by people with disabilities, again a practical response rather than an ideological one, was the obvious aids and appliance package which again had been sought by people on the ground for some time for the replacement of basic equipment. It was a forlorn hope, almost like the east Germans waiting for their travel after 15 years. It was getting to the stage where people in the disability sector had no prospect of basic maintenance, repair or the provision of new wheelchairs or other physical and sensory aids and appliances. The practical response of this Administration and this Department with colleagues, Deputies Dermot Ahern and Mary Wallace, was to provide £4.825 million – £500,000 for the elderly, £4.325 million for appliances. This helped thousands of people. It was not a huge amount of money but it was an important amount given the gaps in the services because people seemed to have an ideological problem about doing practical things rather than being rhetorical about the need for an inclusive, fair and egalitarian society, yet nothing was being done in terms of providing a wheelchair replacement or a basic hearing aid. People wanted a practical response and that was provided by this Administration in a way in which the previous Administation was found incapable of doing, not because there were unimaginable resources but because the use of existing modest resources were not being focused on the people on the ground who needed those services. More than 10,000 people with disabilities benefited from that simple initiative.
A further £1 million was provided for capital funding to health boards in 1998 for aids and appliances. Notwithstanding that funding, it was brought to my attention towards the end of 1998 that there were still substantial waiting lists in health boards for aids and appliances. I allocated a further £4 million to help eliminate those waiting lists. Despite these substantial injections of funding, health boards are still experiencing difficulty keeping up with demand for aids and appliances and discussions will continue in that regard. I do not have the funds available since I put them out at the beginning of the year.
