With your permission, a Cheann Comhairle, I wish to divide my time with Deputy McCormack.
Private Members' Business. - Services for the Mentally Handicapped: Motion.
Is that satisfactory? Agreed.
I move:
That Dáil Éireann condemns the Government's neglect of persons with a handicap and their carers, and calls for an immediate five year programme to deal with the enormous gaps in services which would be based on the recommendations of the report of the Working Party on Services of the Mentally Handicapped, and making similar provisions to meet the outstanding needs of those with other forms of disability.
This is a very important motion. Any Deputy who has attended meetings of parents' associations who are providing care for people with a handicap would know of the frustration and anguish experienced by parents who find themselves in that situation today. Those parents feel they have been neglected and let down. We should put our hands on our hearts tonight and say honestly that we have let down those parents, that the needs of those with a disability have been ignored for a long time, that there are deficiencies in the services provided for people with a handicap, that there are unacceptable regional variations in the services provided and waiting lists to gain access to basic services which people expect to get.
The cost of caring for a person with disability has not been recognised while parents are being forced to go on caring for a person with a disability even though they may no longer be able to cope. They do so in the most appalling circumstances when they are stretched to breaking point, often going without sleep or a break and having no chance of a holiday. Many of us were in the Mansion House last year when a parent gave a most moving description of the position in which she found herself — she was caring for a person aged 29 years — when she pointed out that the only thing she had to look forward to was death as a release for herself and her husband from the task of caring. If we want to call ourselves a Christian community we cannot accept that that kind of situation should continue. Carers, as they grow old themselves, face the dreaded uncertainty of the future while the waiting lists for suitable places are growing longer by the day. It is unforgivable that the Government are neglecting these persons because report after report has highlighted the gaps and needs in this area. Their hopes have been raised several times only to be dashed again in a most cruel fashion.
When I put down a motion condemning the Government's neglect of this area I was not making a mere political statement. I would like to quote Sr. Angela Magee, chairperson of the Federation of Voluntary Bodies who provide service for people with a mental handicap. She said the federation "expresses its deepest concern at the Government's failure to provide the resources necessary to resolve the problems in the mental handicap service". This area has been neglected for far too long and it is most disappointing that the Government cannot face up to the issue. It was disappointing also to see the Government trot out, again, commitments in the Programme for Economic and Social Progress, now well over a year old; during the course of that year no improvements were made.
As the House is aware, for well over a year the Minister sat on the report of the review group who considered Government policy on those with a mental handicap which was presented to him in 1990 before he released it and when it was finally published he announced he was rejecting the recommended target date of 1994 as the year by which the outstanding problems should be resolved and extended it by another four years. As a result we are asking those with a mental handicap or an intellectual disability to wait until 1998 before their problems will be resolved.
The Programme for Economic and Social Progress which was published at the end of last year contains many promises with regard to the development of community care services and commitments to meet the needs of those with a disability but barely a month later when the ink was hardly dry on that document all the promises had been forgotten. A mere £1 million was provided in the budget of 1991 to meet the needs of those with an intellectual disability. This amounts to only £30 for each person with a mental handicap. How could we hope to develop a meaningful response to the Government research document on the needs of persons with disability by providing only £30 for each person? That caused deep bitterness among those people who finally thought their case was going to be heard. To put the matter in context, this allocation amounted to less than one-tenth of the amount which the Government's own report described as the bare minimum that would be required to make a start in tackling these problems.
The problems in this area are deep-seated. Ireland lacks a coherent policy to deal with the needs of persons with a disability. We have no framework developed to ensure that the needs of persons with a disability are met. Each element of a person's life is dealt with in a very fragmented way, with responsibility scattered among different agencies. There is no coherent planning. There are now huge waiting lists even for the most rudimentary of services. I do not think any other body of people could or would be asked to tolerate those conditions. In addition, there is a lack of statistical information on the disabled. This is a clear indication of the priority policy makers attach to this matter. It is true that up until recently many politicians were unaware of the extent of the difficulties being faced by persons with a disability and by their carers. Were it not for the work being done by the voluntary agen-agencies very few services would be provided but the role of the voluntary agencies as a partner in policy making has not been recognised by the Government.
People with a disability find gaps in the services provided throughout their lives, from the cradle to the grave. For example, Ireland stands alone among member states in that it has not developed a genetic counselling service even though this was recommended in mid-1990 in the policy document which the Minister of State has in his hand. Each year 1,600 babies are born with a major impediment of faculty. It is known that a genetic counselling service could be of help in reducing that number.
Those who wish to gain access to the services of a doctor are means-tested rigidly on the same basis as the able-bodied while the cost of caring is ignored. According to a recent estimate it costs £150 per week to care for a person with a moderate handicap at home rising to £240 per week in the case of a person with a severe handicap. By way of contrast, the care allowance provided for parents of a child with a disability is a mere £20 per week. In regard to the carer's allowance, which was promoted with a flourish by the Government when it was announced, the reality is that less than 5 per cent of carers qualify for that allowance because applicants are subjected to a most rigorous means test. In other words less than 5 per cent of those providing care in the home for a person with a disability qualify for this allowance.
Families who provide care become very cynical especially when they hear talk about providing community care services because they know they have had to rely on their own resources and are given very little help. There are huge deficiencies in the services available. For example, the speech therapy service is in crisis. Indeed, we have not developed an effective service. There are about 30 speech therapists available in the country to provide care for people with a mental handicap. The number of persons with a mental handicap requiring speech therapy is estimated at almost 20,000. A reasonable case-load expected to be borne by a speech therapist would be in the region of 50; the idea that we can even begin to cater for the needs of persons with a mental handicap with 30 speech therapists is bizarre. One would need to double, treble or quadruple that figure to have a realistic service of which we could be proud. The same applies to physiotherapy. There is a complete lack of service in many regions and huge variations in the service that is provided. This criticism also applies to nursing assistants.
Home help for someone caring for a person with a disability is minimal and it is often not available in a crisis, in the morning, when parents are trying to get other children to school, at weekends or at night. Respite facilities, designed to give carers a break, are also in crisis; people just cannot get access to respite facilities when they need them. At a minimum, there is a need for 100 extra respite places if we are to be in a position to offer those who are trying to care the opportunity for a holiday and to have relief in a crisis.
Families are being asked to go on caring long after they can cope. The waiting list for residential places is well over 900 for persons with an intellectual disability and 300 for people with a physical disability. In 1991 the Government provided less than one-quarter of the recommended minimum provision in the area of residential care. At the present rate of provision a person on a waiting list could expect to wait ten years before being allocated a residential place. I am talking about people for whom official agencies have clearly stated they are no longer able to provide care in the community. It is a situation we cannot accept. Those parents have an enormous worry hanging over them because they know there are 1,500 people with an intellectual disability who are wrongly accommodated in psychiatric hospitals. There is supposed to be a major commitment in the Programme for Economic and Social Progress to provide services for the mentally handicapped but it has now been watered down and statements from the Minister and the Department are no longer clear-cut in this regard.
Persons with or without a handicap have a right to education, it seems to be a pillar of our constitutional rights, but that is not the reality, particularly for children with a severe disability. Many are accommodated in centres which cannot cope with their educational needs and there is not the necessary back-up of resources to meet their needs in relation to care attendants, therapy or teaching resources, despite two major reports in the eighties which highlighted the need for commitment of resources to this area.
A report in the eighties highlighted the teacher-pupil ratio and the need for commitment in that area. Despite that less than one-tenth of the required teaching resources which were highlighted as needed then have been committed in the intervening nine years. Little has changed in spite of these major reports on educational needs.
When children leave school the situation gets even worse; anyone who has taken the trouble to examine the situation cannot but describe it as a crisis for adolescent persons with a handicap. Apart from the lack of residential places, to which I already referred, there is an enormous difficulty in getting any opportunity for a person with a disability to have an occupation which matches his or her capabilities. There is no training guarantee, which we would apply to the able-bodied; discriminatory rules are applied in access to training which do not apply to the able bodied. You have to be on a means tested allowance before you are even considered for training if you are unfortunate enough to have a disability. That rule is not applied to the able bodied. There are about 1,200 people waiting for placement in day centres and last year no new day centre was provided. There was a recommendation that 450 should be provided but none was in 1991.
It is virtually impossible to get sheltered employment and where it is available, it does not offer proper terms of employment. Even European politicians have highlighted the poor conditions of employment in Ireland for people with a disability. Such centres as there are face imminent financial crisis because, under EC rules, aid is confined to training to allow people to complete in the open market. The reality is that most of our training centres and sheltered workshops are not training young people to find employment on the open market. As a result, year in, year out, there is a tightening of the availability of funds from the EC and there has been no substitute funding from the Exchequer to allow the centres to continue. Over the last 12 months there have been cases where people in training have had to be sent home because of budget constraints.
People with a disability seeking a job on the open market face enormous discrimination; unemployment among persons with a disability is estimated to be an astronomic 70 per cent, two out of every three persons with a disability available for employment in the open market are out of work. In the mid-eighties there was a clear commitment to try to tackle this problem and a target was set, 3 per cent of public service posts would be set aside for people with a disability. That commitment has now been abandoned and figures are not even maintained in regard to progress; fewer than one-third of the allocation of posts was achieved. We have abandoned that target. It is a very serious problem and Fine Gael are committed to addressing that huge gap.
Many continental countries operate a system where employers, public and private, either employ a certain proportion of persons with a disability or pay a levy into a fund which is available to provide sheltered employment opportunities for persons with a disability. We have, in effect, abandoned the 3 per cent quota and put nothing in its place. Ireland has no policy of providing employment opportunities for persons with a disability.
Most of us would like to see persons with a disability participating much more widely in community life, but they often face unsurmountable obstacles to such participation to which we all pay lip service. Public facilities are generally inaccessible; you only have to look at this House to realise that if a TD was confined to a wheelchair he or she could not get in or out of this Chamber. We do not think in those terms which is an indictment of legislators. The same is true of most polling stations which are not accessible to people with a disability. That applies not just to Leinster House but to public facilities throughout the country. None of our bus or taxi fleets are accessible to anyone in a wheelchair. Recently when we had the opportunity to allocate new taxi plates in Dublin we made no provision to designate some of them for persons with a disability, and that was a scandal.
The same is true of access to accommodation. The public housing programme has virtually ignored the needs of persons with a disability. It was only recently that an effort was made to assess these needs. There is no real policy to foster independent living by those people. It has been left to the voluntary agencies in this area to take up that task and provide some support for those people. Every local authority should set aside a quota of the housing allocation to cater for persons with a disability. As the public housing programme declines specific categories of people cannot provide accommodation for themselves. The Government may be right in saying that more people should be encouraged to find accommodation but that rule cannot be applied to persons with a disability, 70 per cent of whom are out of work. We will have to address these issues very seriously.
I mentioned that the voluntary agencies have to carry most of the burden, but they get little thanks for it. They are not seen as a partner in this area. In the last four years the national lottery has siphoned off £50 million from the funds raised by voluntary agencies who cater for persons with a disability. By contrast those agencies received only £3 million from the national lottery. In effect we have allowed the national lottery to rob some of the most vulnerable groups in our community of the resources that were available to them. The alternative lottery, operated by Rehab, is run for agencies providing care for people with a disability. That lottery labours under enormous restrictions in the Gaming and Lottery Acts. It is not possible to develop alternative fund raising to substitute for the £50 million loss. The maximum payout by the Rehab lottery in any one week is a mere £10,000. On a regular basis the pay-out by the national lottery amounts to £1 million for the top prize alone, not to talk of the other prizes. That is grossly unfair because it has sucked money from the agencies who provide care and support in this area.
This House has failed miserably to address the needs of persons with a disability. I published this week a comprehensive programme that addresses all those issues. It sets about bringing people with a disability in from the cold, to make them equal social partners so that their concerns are met, in the same way as are the concerns of others, in the Programme for Social and Economic Progress and other negotiations. We propose that a Minister of State should pursue actively a charter for persons with a disability, that legislation be introduced to eliminate discrimination, particularly in the workplace and that clear commitments be given to the rights of persons with a disability in the area of caring, education, accommodation and access to public facilities. That has to be under-pinned. Most importantly we must give clear recognition to the cost and the burden of caring. We must relax the terms of the carer's allowance and provide temporary places so that people can get a break from the task of caring. The children of people with a disability should have access to medical cards so that they do not have to look for payments and allowances that are arbitrarily taken back from them, with no proper appeal mechanism.
The system that has been allowed develop here is not acceptable. A five year programme is urgently needed. I do not think the House will accept the notion that the Government will address these issues over a period of seven years. A five year programme should have been implemented last year but instead nothing was done. I do not think any Member will accept the Government's genuflection to the report on hand and their failure to provide solid funding in the 1992 budget. I hope the Minister of State will have a message of clear commitment to the needs of persons with a disability, both physical and intellectual.
I second the motion. The amendment in the name of the Minister for Health is a complete evasion of responsibility, with pious aspirations of what should be done but no concrete evidence that anything will be done in this regard. It would be laughable if this was not such a serious issue. The Minister knows, as does everybody, that the record of the Government in the provision of services for people with a handicap and for their carers is shameful. That is the reason we put down this motion for debate tonight. It is also the reason Fine Gael launched their policy document yesterday —A Coherent Policy for People with Disability. That document which is available will be the Fine Gael policy when in Government. It outlines clearly the direction Fine Gael intend to go in the provision of services for people with a disability.
There is too much fragmentation and duplication of departmental responsibility in matters dealing with the mentally handicapped. It is a classic case of buck-passing. I am sure the present Minister for Health is well aware of this because she has come from the Department of Education who often passed the buck to the Department of Health and vice versa. I witnessed an example of buck-passing in my constituency this year when a special class for severely handicapped children was closed in Merlin Park Hospital and a special class was opened in Scoil Caitríona, Renmore national school. The children who attended the class in Merlin Park had a full time carer but when they arrived at school on 2 September in Scoil Caitríona there was no carer and they had to go home because it was not possible to continue without a carer. We spent three frustrating weeks contacting the Department of Education seeking a full time carer's assistant for the children in this school. It took the Department of Education three weeks to reply, stating that we should contact the Department of Health and three weeks later that Department told us to contact the Department of Education. Thus, the buck-passing continued.
One Government Department should be responsible for the educational needs of children with a disability. Eventually the problem in this school was solved by the provision from the national lottery of £10,000 on a once off basis for a child carer assistant. It should not be a matter for the national lottery as to whether those children received the facilities and the care to which they are entiled. It should be a matter of policy, and one Department should have responsibility for that
Without the outstanding contribution of voluntary organisations, there would be serious problems in several areas. Parents, and in some cases aged parents, are being forced to continue caring long past the time they can adequately cope. Parents have an in built fear of what will happen their child when they pass on. In County Galway, for example, 21 mentally handicapped people are awaiting admission to residential care. Because of the lack of provision in the Government Estimates, there is very little respite care available. It is essential that carers get a break from caring for somebody 24 hours a day, 365 days a year, but in most cases it is impossible.
The carer's allowance was announced with great fanfare by the Minister for Social Welfare a year ago. This was to replace the prescribed relatives maintenance allowance and the allowance was raised from £28 to £45. People's hopes were raised that at last this was a genuine attempt to acknowledge the efforts of carers in caring for people in their own home. Most people's hopes were dashed, however, when the qualification restrictions were so rigidly enforced. Indeed, in Annaghdown, in my own constituency, a mother caring 24 hours a day for a severely disabled person in her own home was granted the princely sum of £2 a week, an insult, because her husband had a few cattle and sheep on the land. She will continue to care for this disabled person and has no opportunity to avail of respite care. These people want their work to be recognised. It is very degrading for people to be put through the mill by social welfare officers when their case is so obviously justifiable.
Children with severe disabilities should have a right to education, but this right does not exist at present in Ireland. The concept of integrating special classes in ordinary national schools is being pushed by the Government at present, but this is a waste of time if there are not adequate back up facilities. Indeed, it may be a retrograde step if the appropriate back up services are not provided. I can give an example in my own constituency: eight profoundly deaf children and one totally blind child attend a special class in Claddagh national school. They had the assistance of a full-time carer up to the beginning of this year but this was discontinued because the health board had not budgeted for providing the service, yet the Department of Health do not recognise this, nor do the Department of Education. The problem still exists in that school.
My colleague dealt with the whole question of the accessibility of public buildings to disabled people; indeed public buildings, toilets and telephone boxes have not been modified to cater for those with disabilties and footpaths have not been dished to allow people with disabilities to go about their ordinary business. Accessibility should be made a necessary provision in all planning matters.
Fine Gael was the first political party to treat the disabled seriously. Our Leader, Deputy John Bruton, appointed me spokesman with responsibility for the mentally handicapped and special education. I have learned a great deal from my year's experience. I am very pleased to be associated with my party colleague, Deputy Richard Bruton, who yesterday launched a policy document A Coherent Policy for People with a Disability. This is the first serious attempt by any political party to address the problems of people with disabilities in the home, in the community, in schools and in the work place. It is fitting that this document was launched this week following Disability Awareness Week last week when I took the opportunity to visit schools, workshops and residential centres catering for the disabled. I was greatly impressed by the wonderful work being done in teaching, caring and training.
I take this opportunity to compliment the parents, teachers, trainers and the many voluntary helpers and fund raisers who devote a lot of their time and energy fund raising to help finance those schools and projects. Last week I visited a school for handicapped children in Snipe Avenue, Newcastle, Galway. This school is comprised of a number of prefabs. Before the general election in 1989 the former Minister for Education came to Galway and with the Minister of State, Deputy Fahey, announced amid a great fanfare that the long awaited new school would proceed. A year later, earlier this year, the Minister of State had to announce that the building of a new school would not proceed and that the pupils would be transferred to the Brothers of Charity School, Renmore. This was resisted by the parents and a campaign to have the promised school built in Snipe Avenue got underway. Then, prior to the local election, a similar proposal was announced, and the school plans were sent out to tender.
I have been pursuing the matter and in reply to a parliamentary question, I was told the tenders were being considered but the school could not proceed until the finance become available. This is the answer parents and teachers are getting from the uncaring Department. They have to work under very difficult conditions. Picture a 21 year old prefabricated building with a felt roof; during the wet weather basins have to be placed on the floor to catch the water, and it is dangerous to switch on a light because water is running down the walls. Yet the Minister told me in reply to my question three weeks ago that a new school will depend on the availability of finance in the 1992 Estimates.
I ask the Minister of State, Deputy Flood, the only representative of the Government present, to take up this matter again. I will ask the new Minister for Education to take up this matter from the educational point of view, because it is very serious. This is repeated in several constituencies throughout the country.
I am very pleased to be associated with the policy document launched by the Fine Gael Party yesterday. Some of the main recommendations are:
Fine Gael will establish a National Council comprised of service providers and of persons with a disability. It will review policy, and will be included as a Social Partner on equal terms.
Fine Gael proposes to implement a five year programme to tackle the outstanding defects in policy. Fine Gael recognises that this implies a commitment of extra resources both current and capital to the task.
However this is a neglected area providing for people who make up 8 to 10 per cent of the total population. All of our proposals could be comfortably funded by redirecting just 1 per cent of the existing budgets for Health, Education and Labour over the five year period.
I hesitate to interrupt the Deputy, but I would be grateful if he would bring his speech to a close; his time is exhausted.
I strongly support the motion. It will be obvious to those who study the amendment tabled by the Minister that it is only a means of evading the issue rather than facing up to the problem that we all know exists.
I move amendment No. 1:
To delete all words after "Dáil Éireann" and substitute the following:
notes the Government's commitment in the Programme for Economic and Social Progress to the provision of adequate and appropriate services for persons with a mental handicap (based on the report of the Review Group on Mental Handicap Services) and those with other forms of disability. That Dáil Éireann also endorses the Government's proposals as outlined in the joint Programme for Government to provide improved services for people with mental handicap and other vulnerable groups and notes the Minister's firm intention to progress this stated Government commitment.
I want the House to reject the motion tabled by the Fine Gael Party and to support the amendment of the Minister for Health and her efforts to enhance services for people with mental handicap and their carers.
The first point I ask the House to accept is the fact that, under successive Governments, our services for people with a mental handicap have improved beyond all recognition. Services have been built up over the years, mainly by lay and religious voluntary agencies. At the time of the foundation of the State there was only one centre specifically catering for people with a mental handicap. Now there are about 70 voluntary agencies in addition to the statutory bodies providing a wide range of services.
A substantial amount of money is being spent on a range of services to people with a mental handicap. In 1991 over £170 million will be spent on these services. About £140 million is being spent on the provision of day, residential and support services. The voluntary mental handicap agencies funded by my Department will receive £81 million this year and £33 million is being spent on cash allowances. The domiciliary care allowance is being paid to 3,500 families and over 10,000 people with a mental handicap are receiving the disabled person's maintenance allowance.
Relative to other public services, funding for the mental handicap services has been protected. The allocation to agencies funded directly by my Department increased from £39.5 million in 1981 to £77.2 million in 1990, an increase of 95 per cent. During the same period the net non-capital expenditure on health services increased by 80 per cent. I must, however, also acknowledge that the number receiving services during this period rose by 34 per cent to the current figure of 11,500 people. I recognise this increase in productivity in the services concerned. These figures demonstrate the commitment of the Government to people with a mental handicap. I pledge that this commitment will be continued and strengthened.
The key contribution of voluntary agencies was simple but radical. The sisters, brothers and committed lay people believe in the dignity of the person with a mental handicap. They believe that with extra help and love, children with a mental handicap could develop their personalities and skills far beyond what many thought possible.
The role these agencies played in developing mental handicap services is well known. Initially they received little support from the State for their efforts. Today, however, the State provides almost the entire funding for services. The voluntary sector continues to play a leading role in pioneering new services and new approaches to service delivery.
Mental handicap services have changed radically and for the better over the last 20 years. High standards of service provision have been achieved notwithstanding the fact that our country's economic resources are lower than most of our European partners with whom we tend to compare our services. This is in itself an achievement, due to the sustained efforts of the voluntary and statutory agencies. The standard of service provision compares favourably with that of other countries. We have established an international reputation in the field of mental handicap. In this way the philosophy and standards of care that are the hallmark of our services are being shared in countries with a different historical experience.
This is not to say that problems do not exist. They do and they must be faced. The Minister for Health will outline some specific proposals in her contribution to this debate tomorrow.
There are about 25,000 people with a mental handicap here. These people have either a mild, moderate, severe or profound degree of mental handicap. Some have additional physical handicaps. The kind of service they need varies with the age, degree of handicap, dependency level and the level of home support available. Some lead independent lives and need little or no special assistance. People with a severe or profound handicap and a physical disability tend to require most care.
Services currently being provided include the early identification of infants whose development is delayed. Services of children up to the age of three are delivered mainly in the home. After this children attend preschools to develop their abilities and prepare them for school. There is a growing and welcome trend of children with a mental handicap attending local preschools.
During the school-going age, educational services for children with a mild or moderate mental handicap are available in special schools or special classes. Child educational and development centres cater for children who are unable because of the severity of their handicap to attend a special school or class. In addition to special schools and classes, 950 children attend at day courses throughout the country.
Vocational training assists school leavers to acquire self-care, social and work skills. These skills are essential to maximise the young adult's potential to lead an independent life. Long-term training centres cater for people who have not been able to find work after vocational training or who are not suited to open employment. More than 4,500 adults attend training and activation services.
These services enable people with a mental handicap to continue living in the family home. However, it is not always possible for the person with a mental handicap to live at home. Alternative accommodation may be provided in group homes or in foster homes. Almost 1,500 people live in this type of accommodation.
Since my appointment to the Department of Health I have had the opportunity to visit several group homes throughout the country and I was tremendously impressed by the way they are managed and the family-type atmosphere generated within the homes. The running of the group homes is a credit to all concerned. They make a great deal of difference to the lives of those who reside in them.
At present most residential services are provided in domestic scale accommodation, often in bungalows in the grounds of a residential centre. As the more independent people move to the community, these centres will mainly accommodate people with the highest levels of dependency. At present 4,500 people live in these residential centres.
The value of respite care has been overwhelmingly demonstrated in recent years in supporting families who want to care for their son or daughter but who find the burden of caring without a break too much. Respite care takes many forms. It may be in a residential centre, a hostel in the community or in another family who have offered to care on a short term basis.
With regard to care on a family basis my experience has been that it will have a great deal to offer in the future. I have had some recent experience of having been introduced to this type of family care which I found to be most impressive. I feel quite sure this constitutes the way forward in offering further respite care to families in need of this type of support, where the care is provided within a definite specific family setting. I applaud those at present involved in advancing this process. Altogether 11,500 people with mental handicap are receiving services funded by my Department.
I should like now to outline Government policy in relation to people with mental handicap. This policy is contained in the report of the Review Group on Mental Handicap Services — Needs and Abilities, an excellent document published in July 1990. I understand that the committee who drew up that report were established in 1986 and the four years approximately they spent drawing up that report were put to very good use. It is my opinion and that of those interested in this issue that it is an outstanding policy document which will act as a blueprint for the future development of the services. I want to applaud all those who participated in drawing up this excellent report, the first major policy statement on mental handicap since the report of the Commission of Inquiry into Mental Handicap in 1965. The report of the review group outlines the principles which should underly the provision of services and endorses the direction in which our mental handicap services have developed. Throughout their report the review group emphasise the importance of supporting the family and of providing services locally, believing that, with adequate support services, the overwhelming majority of people with mental handicap could be catered for in the community. The report also emphasised the need to provide mentally handicapped people with the right services at the right time to ensure they develop their full potential for independence. The report also pointed to the need to meet the growing and ageing mental handicap population. They recommended the number of residential and day places needed to keep abreast of demand in coming years.
The Government agreed to the recommendations of the report in principle and, within the context of the Programme for Economic and Social Progress, are committed to their implementation. The Government approach is contained in that programme with particular reference to services for the mentally handicapped. It is as well to remind the House of the contents of that programme in this regard since it states that additional resources will be made available to enable an appropriate mix of community and residential services to be provided for the mentally handicapped so that those capable of living within the community can do so while those for whom that approach is not feasible can be provided with residential places. It is said also that community services will be developed by the expansion of the network of group homes, day care places and respite care. In addition it states there are 1,500 people with mental handicap inappropriately placed in our psychiatric hospitals who should be transferred to the mentally handicapped services, which transfer would be facilitated by expanding community-based mental handicap services. It states further that support services for people with mental handicap and their carers in the community will also be strengthened——
It is not happening.
——with special attention being paid to the needs of young adults with mental handicap at present being cared for by ageing parents. The priorities which have been identified are based on the recommendations of the report of the same Review Group on Mental Handicap Services.
With regard to recent developments, I should say that, since the completion of the report of the review group, positive steps have been taken to meet the needs of the mentally handicapped population. I cannot accept Deputy Richard Bruton's contention that no improvements have taken place since the publication of the Programme for Economic and Social Progress. I might point out to the Deputy that in the 1990 budget the Government allocated an additional £2 million for mental handicap services, enabling a number of developments to take place.
The review group sought £11 million in both years, and £3 million rather than £22 million were provided.
The Deputy said that no improvements had taken place since the publication of the Programme for Economic and Social Progress. I am pointing out to the Deputy that improvements have taken place. I have dealt with the financial aspects of those improvements. I am about to outline specifically what were those improvements.
They are a tiny fraction only of what was committed.
Deputy Richard Bruton has already made quite a long speech on this subject. He also has the right of reply later; that should be sufficient.
These improvements provided for 149 additional residential places, 21 respite places to cater for 200 people, 442 day places and 25 staff for additional supports.
Because of the particularly serious position which obtained within the Eastern Health Board region, half of the £2 million was allocated to that region for an extra 91 residential places, 184 day places and expanded family support places for 66 clients. This year a further £1 million was allocated in the budget to build on those developments enabling 20 places to be commissioned in Cheeverstown House and has funded the opening of 25 places in Áras Attracta in Swinford as well as additional respite care in each health board region.
Still half empty.
In recognition of the serious position obtaining in the east, my Department have ensured that the bulk of the money will benefit families in that region. For example, 12 of the places in Áras Attracta were filled by people in centres in the east, people whose families wished that they could return to Mayo. In turn their places were filled by people from the priority waiting list in the east.
I have referred to the additional allocation of funding which allowed for the commissioning of the extra places in Cheeverstown House. I want to pay tribute to a number of individuals and organisations who assisted over a long and sometimes painful period in trying to come to terms with problems obtaining with regard to the opening of those additional places in Cheeverstown House. If my memory serves me correctly the issue of Cheeverstown House and the concerns of Members on all sides of the House at the impasse over a number of years which prevented the opening of these additional, much needed places, was raised on a number of occasions in this House. I particularly want to pay tribute to the federation of voluntary bodies providing services for people with mental handicap in resolving that dispute. Both the Eastern Health Board and the board of Cheeverstown House are working to the agreement negotiated by the federation in October 1990. The implementation of the agreement is being overseen by Mr. Justice Declan Costello.
I want to pay particular tribute to Mr. Justice Costello for the time, care and attention he gave the position obtaining at Cheeverstown House, on having used his undoubted skills in overseeing the implementation of the agreement with regard to the opening of the additional places there for which funding has been provided. In regard to Cheeverstown House I am pleased to announce that a new chief executive officer will take up duty shortly and funds have been made available to open 20 additional places there early in 1992. The people who will take up these places have already been identified. They were all on the priority waiting list in the Eastern Health Board area. They have been offered temporary accommodation while they await the opening of the places in Cheeverstown House. Therefore, we can now look forward to the opening of all the remaining places in Cheeverstown House and to this important residential centre playing its full part in the mental handicap services in the Eastern Health Board area.
All of us who have had an opportunity to visit Cheeverstown will have been extremely impressed by the design and layout of the complex and by the approach of the staff to their work and responsibilities there. I was interested in the centre long before I came into the Department of Health and had visited it on a number of occasions. I am particularly pleased that the impasse which had developed has been resolved and that provisions are being put in place to allow for the opening of the extra places so that Cheeverstown can realise its excellent potential.
I am, of course, well aware that there is still a gap between policy and developments on the ground. I am conscious of the great burden which families carry in caring for a mentally handicapped member. I do not under-estimate the challenge we face, with the Minister for Health, in providing for these needs. Plans are being prepared in each health board area, in response to the recommendations in the report and the commitments of the Programme for Economic and Social Progress, which will quantify and prioritise development needs at local level. These plans are being prepared in consultation with the voluntary bodies providing services in each area. This is a very important aspect of the drawing up of these plans. It is necessary at all times to consult fully with the voluntary sector who have provided excellent services in this area and have a wealth of practical experience and knowledge. The Minister and I and the officials of the Department of Health fully understand the need to consult very closely with voluntary bodies who have provided services throughout the country. We can draw on their experience, knowledge and commitment.
It is obvious that we have not stood still in relation to mental handicap. A substantial amount of money is being spent on a range of services to people with mental handicap. Over £170 million will be spent on these services in 1991. About £140 million is being spent on the provision of day and residential support services. The voluntary mental handicap agencies funded by my Department will receive £81 million this year. Relative to other areas of expenditure and the number of people involved, it is crucial that the report be implemented as quickly as possible. This is part and parcel of the Programme for Economic and Social Progress.
The main challenge we face in developing services for people with disabilities is to respond to the need for greater family support and for more residential places for older and more dependent people with mental handicap. The position is particularly acute in the Eastern Health Board area. We accept that some families are carrying an intolerable burden and have been doing so for far too long. As the life expectancy of people with mental handicap increases, few vacancies arise in existing residential centres. People who would have been taken into care ten years ago are still on waiting lists with little or no prospect of placement in the foreseeable future. Elderly parents fear for the future of their son or daughter when they themselves die. The Minister for Health will address this specific issue in her contribution to this debate tomorrow.
Health boards, by virtue of their general obligation to provide services under the Health Acts, have responsibility for the health, welfare and rehabilitation needs of people with mental handicap resident in their areas. However, these needs are catered for substantially by voluntary organisations. Most of the larger organisations relate directly to the Department of Health for approval and for resources to develop their services. The Department take account of the views of the health boards in relation to these proposals. Some of the organisations provide services in more than one health board area. In addition to the general health and welfare schemes provided by the boards to which people with mental handicap have access, the boards also make available a range of specialist services, either directly or through the agency of local voluntary organisations which they grant aid to varying degrees. The 1991 allocation to mental handicap agencies funded directly by the Department is £81.6 million. The 1991 estimated total expenditure on services to people with mental handicap is £171 million. Since the setting up of the national lottery, £3.844 million has been made available for services to people with mental handicap for the provision of community-based services and renovations to existing facilities. This excludes grants made by health boards from their 1991 block allocation to mental handicap services.
People with mental handicap are eligible for any health service on the same basis as other people, for example, general medical services, hospital services, dental services, public health nursing services, paramedical services and welfare services. Children under the age of 16 are provided with hospital in-patient and outpatient services necessary for their condition, without charge. Persons with mental handicap can also obtain without charge the drugs and medicines necessary for their condition. Disposable appliances are also provided.
A monthly allowance of £86, the domiciliary care allowance, is payable in respect of a child aged between two and 16 years with mental handicap who is maintained at home. Expenditure on this allowance in 1991 amounts to £3.768 million. The disabled person's maintenance allowance amounting to £55 per week is payable to those over 16 years who are not in long term care. Approximately £29.506 million is spent on this scheme. Recipients of the DPMA are entitled to a free travel pass and provision was made in last year's budget for a companion to travel free with a DPMA recipient. This was, in the opinion of many, a most enlightened decision. The case had frequently been made by those close to people with mental handicap that there was a need for such a travel pass and it had been sought for many years. The welcome decision to allow a companion to travel free with a DPMA recipient has eased the burden for some families who have a DPMA recipient living at home and it has also alleviated a certain amount of pressure and worry.
An income tax allowance of £600 per annum is available to a family who have a mentally handicapped member. Grants are available for structural alterations and extensions to houses to improve the living conditions of disabled people. This very important facility is available to people who need to carry out structural changes of one kind or another to improve living accommodation for disabled people. It is generally dealt with through local authorities and seems to be working reasonably efficiently. It has made a great difference to people who wish to improve the living conditions of disabled people. They are helped by health boards and local authorities to achieve this objective.
The motion also refers to people with other forms of disability. Government policy in relation to the provision of services and facilities for people with other physical disabilities is designed to enable people with such disabilities to be as self-reliant and independent as possible and to have full equality and integration in all aspects of community life. This independent living policy was outlined in 1984 in the Government's Green Paper on services for disabled people entitled, "Towards a Full Life" and was further emphasised in detailed reports on specific areas of the services, for example, the planning for the future report on psychiatric services and the report of the review group on mental handicap services published this year. We are currently considering the initiation of a review of services for people with a physical disability.
Tá an t-am istigh.
I will bring my remarks speedily to an end. I wish to point out that the policy I enuciated requires a supportive network——
Will the House agree to give the Minister an extra minute or two? The Minister has already had one of the extra minutes. In timed debates unfortunately we must stick rigidly to time.
I understand that. In my contribution I have touched on the services provision, the financial implications, the numbers involved, the workings of the voluntary sector with the statutory agencies and so on. We have achieved a great deal in a relatively short time. It is for that reason that I ask the House to support the Government's policy of providing a caring and sensitive service to persons with a mental handicap and the amendment before it tonight.
I wish to put on record the Labour Party amendment to the Fine Gael motion. I understand I cannot move the amendment now but I will move it tomorrow evening. I should like to express my appreciation to the Fine Gael Party for accepting the Labour Party amendment which essentially is an addendum to their motion. We have sought in our amendment to strengthen the Fine Gael motion by making it more specific in terms of the finances which are urgently required and conferring legal rights on people with a mental handicap. In addition, we have suggested that the time is right for the appointment by the Government of a Minister of State with responsibility for co-ordinating these services. We do this with the greatest respect to the Minister of State at the Department of Health. Nevertheless we are anxious to ensure the co-ordination of services for the mentally handicapped. As the House will be aware there is a vacancy in the Government at Minister of State level. I cannot think of a more valuable position than that of a Minister of State with a specific responsibility to pull together the many different and complex strands of policy in regard to people with a handicap or disability.
Our amendment calls on the Government, in the context of the forthcoming Estimates and next year's budget, to begin immediately to provide the resources necessary to implement recommendations in "Needs and Abilities", in particular to provide minimum capital and revenue resources to meet the needs identified in the report to which the Minister has just referred, together with additional resources to make up the shortfall in funding in the years 1990 and 1991 which we identified in previous debates in this House. We are suggesting a capital budget of £4.9 million and a current budget of £6.15 million in 1992. In 1993 we suggest a capital budget of £4.9 million and a current budget of £6.15 million. The needs in 1994 would then drop to £2.9 million for capital programmes and £2.9 million for current budgeting. We also suggest the adoption of international laws on the rights of persons with a mental handicap.
Earlier Deputy Howlin moved the First Stage of the International Law (Rights of Persons with a Mental Handicap) Bill, 1991. Perhaps the Government will accept as Government legislation this Bill which seeks to enshrine a range of fundamental rights for people with a mental handicap in Irish law as quickly as possible. The Minister of State we suggest should be appointed at the Department of the Taoiseach. The Taoiseach is very active in a number of areas and we hope he will turn his attention to the needs of the handicapped. The appointment of a Minister of State with responsibility for the services for the mentally handicapped would ensure the proper co-ordination of services for people with disabilities, the development of new services and the full right of equal citizenship for those with a disability. While this right is enshrined in our Constitution handicapped people have to rely on the voluntary agencies who provide such services.
It has been brought to my attention that one of the main agencies involved in the provision of services for people with a mental handicap have indicated to the Minister for Health that they are on the point of bankruptcy and have sought an urgent meeting with her. Although I have been unable to confirm absoultely this rumour which came from a very reliable source frankly it does not surprise me. Every agency working in this field has suffered grievously from the cutbacks made over the past number of years. If what I have said is correct, I would welcome an assurance from the Minister before the conclusion of this debate that she will arrange to meet this agency as a matter of urgency.
The numerous agencies involved in the provision of services for people with physical or mental disabilities have been under bad management over the years. I welcome the formal announcement by the Minister that agreement has been reached in regard to Cheeverstown. We had been told for a number of months that this was the case but when we discussed the matter with those who care for people with a mental handicap we were assured that while progress was being made the problems still existed. We need to ensure that institutions like this are made available and not tied up by bureaucracy. Many parents involved in agencies both voluntary and otherwise argue that many of the agencies with which they deal are almost too careful in terms of the husbandary of their scarce resources. If these agencies have to cope with acute financial difficulties there is only one reason for that, that the Government failed to make health a priority and failed to make the health and care of the handicapped a priority in the Health Estimate.
I have seen reports from the Minister go directly to health boards asking them to ensure that the handicapped were not disadvantaged because of the cutbacks. Yet health boards sit down and debate and argue very restricted budgets and they are unable to keep handicap as the priority which the Minister wants. I would be concerned that in the Eastern Health Board area, where there is a huge demand for facilities for the handicapped, in any rationalisation of the health services which would encompass all the hospitals, voluntary agencies and everybody else, the handicapped would have to fight within that group of people for what is a diminishing budget. As a result, because they are not as strong in arguing their case, they could have a problem in ensuring that the minimum priority which they have with the Department at present will not diminish. At present they can negotiate directly with the Department as regards the needs of the handicapped. Like the Minister I compliment all the voluntary associations, the parents association for the mentally handicapped, the union of voluntary organisations for the handicapped and many other agencies throughout the various constituencies, who are on the streets begging for charity to ensure the availability of essential services for these people because the Government, in spite of what the Minister has said, have not come to grips with this problem. The Minister has given an extra £2 million and an extra £1 million and money from from the national lottery but he talks about all that is given to the handicapped as if it was something special. These are some of their rights. Why should they not have the right to transport?
We agree.
Then, do not make it a special case.
We are spelling it out as it is.
Other sections of the community require and receive these facilities. There are special needs for the handicapped which the Minister has not identified as a major priority of this Government. Since 1987 all the Estimates have been subjected to more and more cutbacks to the point where most organisations can no longer manage on existing allocations to maintain their services let alone meet any possible increase in demands. This is not the first time we have brought this matter to the attention of the Government. I compliment the Fine Gael Party for bringing forward this motion. During a debate on the Estimates on 9 July 1991, at column 1402 of the Official Report I said:
The level of services provided for people with physical or mental handicap has deteriorated in recent years. We have debated this issue regularly in the House. The Minister has put forward proposals, plans and figures which seem to indicate that everything is much better in this area but I intend to put on the record of the House some of the specifics in this area which show the way in which we have neglected the mentally handicapped. The review group appointed by the Minister outline graphically in their report which was published last month the problems in this area. They say that there has been a standstill in real budget terms while those with a disability or mental handicap and their families have grown older and their demands more pressing. This is a terrible indictment of any Government in regard to the provision of services for this very vulnerable group.
The crisis in this area covers many aspects, the most worrying of which is the lack of a multi-disciplinary, early intervention service for parents and children. The absence of pre-school services for children with delayed development has meant that parents have to cope alone and children are losing crucial opportunities which they may not be able to avail of again. The Government need to respond to the crisis in the area of mental handicap. The hardship suffered by people who have mental and physical disability will increase unless approporiate plans are made but planning must take place in the knowledge that resources will eventually be made available.
On the following day, 10 July 1991, I went on to quote specific needs and deficiencies in County Tipperary which has one of the most vibrant voluntary mentally handicapped associations in the country. Without fear of contradiction their record stands as a credit to people committed in this area. They said and I quote from column 1698 of the Official Report of 10 July 1991:
In the absence of a multi-disciplinary, early intervention service as recommended in the Review Group report, parents of infants with delayed development in South Tipperary are left to fend almost entirely for themselves with the voluntary assistance of members of the Association and other helpers.
In the absence of supported pre-school services for children with delayed development, parents are left to cope alone....
The Tipperary Association wishes to draw the attention of the people of South Tipperary to the situation of two schools at Cashel which are providing for a large number of pupils with a multiplicity of other handicaps in addition of their mental handicap....
There is almost a total absence of educational opportunity for children of school going age with a severe or profound degree of mental handicap and when they are accepted in schools or in the developmental centre no additional provision is made by statutory authorities to meet their needs.
Those are the words of people involved in the provision of care for people with a handicap, people who work in a voluntary capacity, depending on charity, FÁS schemes, social employment schemes, teamwork schemes and occasional grants from the national lottery. As Deputy McCormack said this is an area that should not be dependent on lotteries or charities but rather is one in which the State has a major responsibility to respond positively by way of a provision in the budget for an adequate and specific allocation for the people about whom we are concerned in this motion and the amendment from the Labour Party.
The cutbacks in our health services have been well highlighted by us in this House. It gives us no pleasure to do so but we have to keep reminding the Coalition Government of Fianna Fáil and Progressive Democrats members that there are areas, even in difficult budgetary situations, which must be prioritised. The health area, and specifically the area of mental handicap, is a priority. The position of families with a mentally handicapped person has deteriorated in recent years. The Minister is aware of that because it was graphically demonstrated in the report published by his own review group earlier in the year.
There is a standstill in real budget terms while those with a mental handicap and their families are still in need. Parents of children with a disability have been forced to protest on the streets. I have seen them outside the gates of Leinster House, in O'Connell Street, in the rain protesting. I have attended ad hoc committees with colleagues from all sides of this House to listen to people who are professionally engaged in trying to promote submissions to the Department of Health. On a number of occasions my party leader, Deputy Dick Spring, and other representatives of my party have met people throughout the country. We are all aware of the anger and the realisation that a lack of forward planning by this Government is central to their problem. There are particular groups of parents with profoundly hadicapped people in Cork and in other areas who are frustrated at the lack of response to their needs by the Government parties.
The most critical problem facing people with a handicap and their families is the acute lack of residential places. The Minister has indicated his achievements of the past year in improving the number of residential places. Deputy Bruton has already indicated the total need. There is a severe need for residential places throughout the country but particularly in Dublin where the central planning committee of the EHB have identified an urgent need for an extra 325 such places.
Debate adjourned.