Dáil Éireann debate -
Tuesday, 29 Nov 1977

Vol. 302 No. 2

Private Members' Business: - Grants for Mentally Handicapped.

Dr. O'Connell

I move:

That Dáil Éireann calls on the Minister for Health to devise a system of differential grants for the mentally handicapped which will take account of the degree of handicap and the extent of home care required; that powers of admission to and discharge from all institutions for the mentally handicapped be under the control of a panel of public health psychiatrists and social workers employed by the Health Boards; that an approved points system be established to decide priorities for admission to residential and day centres for the handicapped, such a points system to take into account (a) the degree of handicap, (b) behaviour difficulty, (c) disruption of family life, (d) family circumstances; and the health boards be instructed to undertake their statutory obligations for the care of the mentally handicapped by providing a special annual budget for this purpose.

In the entire domain of our health and social welfare services the issue that has been the subject of least public exposure, of the least legislative effort and the least political interest has been the quality of care for the mentally handicapped. We have had benign neglect and more than 50 years of indifference in this area. That is the only way to characterise the total lack of Government policy and commitment to the mentally handicapped, their families and friends and the voluntary organisations who have unselfishly provided care for the mentally handicapped since the foundation of the State. Both as a Parliament and as a people our record in this sphere is one of dismal failure. We have seen fit to ignore the problem whenever and however possible. We have hived off our responsibility and placed it on the shoulders of a few voluntary bodies. We have allowed these bodies to skimp and to scrape on piecemeal finance facilities. We have ignored the plight of those both inside and outside residential care just as we have ignored their families and friends. We have tolerated conditions in mental hospitals that would disgrace the Victorian age, merely implementing paltry reforms and these only when the cries of scandal became so loud and so frequent that even we as politicians could not ignore them.

As legislators we have been extraordinarily lax in our efforts. The friends and the champions of the mentally handicapped have come to rely on press exposes, certainly not on parliamentary initiative, in regard to the hope of some reforms being implemented. We know that newspaper scandals are short-lived, that after a few weeks of national attention and of a few token gestures on the part of the authorities we return to the status quo, to a state of tolerance of the problem that borders on criminal complacency.

The motion I put before the House tonight is not in any way a party political motion because there is no single political party, no Government either past nor present, that do not stand indicted for the legacy of indifference and neglect of the mentally handicapped for which we must all share the blame. This motion is concerned solely with practical and immediate measures to alleviate the problem now by ensuring that the State meets its statutory obligation to the mentally handicapped and that the anomalies which bedevil our system of residential care will be remedied as soon as possible.

At the outset I should like to examine the situation that prompted this motion. According to a census conducted in 1974 by the Medico-Social Research Board and organised by Dr. Michael Mulcahy, there were 11,256 mentally handicapped people in Ireland, representing an incidence of 3.8 per 1,000 of the population. This total includes those of moderate, severe or profound disability and does not include those with borderline or mild mental handicap. When compiling the census Dr. Mulcahy decided for a number of reasons to exclude cases of mild mental handicap. Of the total mentally handicapped tabulated in the census, 55.9 per cent were in residential care while 44.1 per cent were living in the community. The main problem is with the latter group of 4,863 persons who are living outside residential care and for the majority of whom living in the community is a real hardship. These people need residential care. Of the total, 20 per cent are in the five to nine age group.

Although the concept of community care is very popular and represents the way of the future in most types of health care, it is not a panacea for all our problems. In the case of moderate, severe or profound mental handicap, the concept of community care is no solution at all. This is a point on which we must be clear from the outset if we are to crystalise the issues before us.

Community care is desirable for the mildly mentally handicapped but for all other categories of mental handicap residential care is essential. In this regard we are falling down badly. Large numbers of mentally handicapped are being deprived of residential care for two reasons. First, there is an appalling lack of provision of residential centres for the adult mentally handicapped and, secondly, there are anomalies in the procedure for admitting mentally handicapped persons to places in residential homes. These anomalies have resulted in 22.6 per cent of existing places being taken up by people who should not be there—cases of borderline or mild mental handicap. These are the cases that belong in the community and for whom adequate day-care facilities should be provided.

I shall elaborate a little further on this point. According to the census there were 8,652 places in residential homes of which 2,359 were taken up by borderline or mild cases, cases which those who compiled the census did not see fit to include in the final tabulation for the prevalence of mental handicap. Therefore, we must ask how many of these borderline or mildly-mentally handicapped persons belong in residential care and, if a substantial number can be excluded, how many actual places have we for the treatment of the moderate, severe and profound mentally handicapped who really need residential care. According to the census there were at least 1,319 cases of mildly mentally handicapped with no behaviour difficulty and there were 514 borderline cases whose presence in residential care was related to social factors and not to mental handicap. Therefore, there were a total of 1,833 who did not belong in residential care and who were preventing those with moderate, severe or profound degrees of mental handicap from receiving care. This is a very serious situation. It leaves us with only 6,918 places actually devoted to the care of the moderate to profound mentally handicapped. Having regard to the 1974 census showing a return of 11,256 people with such handicap we can see that there is a shortage of more than 4,000 places. It may be that more places have been created in residential care since 1974 but the incidence of handicap will ensure that the proportion between places and those outside residential care would remain as it was in 1974.

We have, then, two clear problems before us. The first is the overall shortage of residential centres for the adult handicapped and the second is the large number of places being taken up by cases of mildly-mentally handicapped persons who would be treated best in the community. The first problem can be solved best by the Department instructing the health boards to introduce a special annual budget of sufficient size to provide residential and day-care facilities to meet existing needs in each health board area in the shortest time possible.

The second problem can be solved best by the introduction of a points system for admittance to residential centres. As I envisage such a system it would be administered by an independent panel of health and social welfare experts on the basis of the degree of the mental handicap and of the family circumstances. I admit that the solutions that I am suggesting are not easy. They demand that once and for all the State must accept its responsibility to the mentally handicapped and must provide the financial commitment and the administrative expertise necessary to ensure that there are adequate facilities managed equitably in accordance with criteria of need.

Is it not time that the State stopped shirking its responsibility to the mentally handicapped? We can no longer get by with a mental health week once a year and with ritualistic pats on the back for the voluntary organisations who are providing care for the mentally handicapped. We must accept responsibility as a community as well because the increase in the finance necessary for decent care must eventually come from the community. It will have to cost money and we will have to pay the price. Our respect as a self-proclaimed Christian country is at stake here. In demanding that the State meet its responsibility I am in no way denigrating the work of voluntary organisations in the care of mental handicap. Indeed, it is no exaggeration to state that it is to the voluntary organisations that we owe a debt of gratitude for the dedicated service they provide here today for our mentally handicapped. For much of the time the voluntary bodies have worked in anonymity while nobody knew the real extent of the problem. Throughout the years they have worked under appalling conditions. With lack of money they faced a near impossible task and carried the full burden of care for the mentally handicapped. The State at the time abrogated its responsibility with a few flattering remarks on the work done by the voluntary groups. At the time the public viewed mental illness as an unnatural aberration, a condition to be swept under the carpet at all costs and be hidden away.

To a very large extent things remain the same today. But there is hope: mental handicap has at last taken its first tentative steps out of the shadows of superstition and ignorance. The public here are beginning to hear of the rights of the mentally handicapped to suitable care. Parents and relatives who are affected are becoming less and less content to keep quiet. They realise that their loved ones are entitled to proper care and, in the light of the present inability of the system to cope, the State does have an obligation to them and must respect that obligation. It is not a case of the parents wishing to shake off their responsibility. We must always remember that we are talking of the moderate to the profound mentally handicapped, those who require institutional care, not those whose parents would like to pass off and shrug their responsibilities. No, these need quality residential care. They are cases which cannot be cared for in the community and their parents have a right to obtain quality residential care for them. The time is long overdue when a more militant position was adopted by the parents of mentally handicapped children. In the hard realities of modern pressure group politics the voice of protest is heard only when organised and persistent. In this regard I should like to acknowledge the work being done by the Association for the Rights of the Mentally Handicapped in lobbying for a just and adequate service for the mentally handicapped of Ireland. They are doing great work and I wish them every success with it. The establishment of such a service is dependent on the State meeting its obligation both financially and administratively.

The specific proposals in this motion outline the manner in which this obligation can be fulfilled. First, the Department should institute a system of differential grants so that all available resources are distributed according to the level of prevailing need. The present system, under which a global grant is paid in respect of a number of institutions, is not an effective means of ensuring that scarce financial resources are allocated to areas of greatest need.

Perhaps the wording of the first portion of my motion is a little ambiguous and may confuse the Minister. I apologise for that because he may understand it to mean that I am looking for differential grants in respect of the constant care allowance for severely-handicapped children. On that score I should like to say, as I have already mentioned to the Minister, that the £25 introduced in 1973 is totally inadequate to meet the parents' needs. While the Minister will agree with me that the cost of living has increased by over 100 per cent since 1973, it would mean that we should out of justice to these people increase that amount 100 per cent to meet the rise in the cost of living. It would constitute a small gesture to the benefit of a person needing constant care.

Other very important points are the powers of admission to and discharge from institutions for the mentally handicapped. This power should be placed in the hands of an independent panel of public health psychiatrists and social workers employed by the health boards. It would be incumbent on this panel to assess and grade the degree of handicap, to consider a social report on the family and home circumstances of the child or children in question. This could be done according to a points system, the points being allotted to the degree of handicap, the behavioural difficulties, the disruption of family life and other family circumstances.

The problem at present is that parents whose children have a moderate to profound handicap have no information whatsoever available to them as to when their child is likely to be admitted to an institution. Also they cannot see how other children are being admitted before theirs. Parents feel that they are up against an arbitrary system in which they see places going to cases which to all appearances are of a markedly less serious nature. That is the situation obtaining at present. That there is substance in these anxieties on the parts of parents can be gauged from the fact that the 1974 census showed that there were at least 1,319 places taken up by those who should not be in residential care. There may be cases where a mildly mentally handicapped child or children were admitted for a good reason, but without a points system there is no way of knowing. Any system of admission to these institutions must not only be just but must also be seen to be just.

I should like to pay tribute to the social workers involved in mental handicap. I received from them this morning a document relating to the work they are doing in this field. I understand they have formulated a points system, strangely enough, at the request of the Mental Handicap Committee of the Eastern Health Board. They submitted their proposed system to the committee early in 1977 but, aside from an acknowledgment, have received no further communication. They worked out a comprehensive points system based on familial factors, factors specific to the handicap and community and economic factors. It is an equitable and flexible system and could provide an ideal guide for an independent assessment panel. I am not saying it is the complete solution, but there is among workers in the field of mental handicap a realisation that there is the need for a points system to be established. They feel the one they have produced for the Mental Handicap Committee—by the way, at their request—should be taken as a guideline, examined and perhaps used to form the basis of a pilot study.

They put forward the following arguments for their points system: firstly, the limited resources presently available to the mentally handicapped must be allocated to those most in need. They say the present system, where resources are insufficient to meet existing needs, creates injustices. For example, those families who pursue their applications more vigorously or who are fortunate enough to have a persuasive advocate would have an advantage over the person without such influence. They say that, though it is impossible to quantify human suffering, a points system is the only equitable solution so long as it is flexible enough to take into account objectively verifiable causes of stress, strain and suffering as well as subjective responses to certain extenuating circumstances or events. They emphasise the crucial importance of consultation on a points system with the administrators of all the voluntary and statutory agencies at present providing care as well as the other professional groups working in the field.

They stress also that any points system would need to be tested in a pilot study before being finalised. They make the point that the points system should work in conjunction with a clearing house and a centralised waiting list. They put forward the following argument in favour of such a system: they say there is no way a given applicant can know which residential centre is more likely to accept an application at a given point in time. One person can be on a number of waiting lists for different residential centres which have different sized lists and different criteria for admission. They continue to say it would be more equitable, efficient and advantageous for all to establish a central waiting list and clearing house to co-ordinate and standardise the criteria for residential placement.

Any waiting list will create problems when people do not know where they are placed on such a waiting list. Indeed the housing list of Dublin Corporation was for many years a source of grievance to those on it because they did not know where they stood on the list. When I finally got on to Dublin Corporation the first motion I moved was one calling for the introduction of a points system. Everyone will agree that the points system is working fairly well. The people know that nobody can jump the list——

Mr. Haughey

I would not go along with the Deputy completely on that.

Dr. O'Connell

Naturally those at the bottom of the list know that their chances are not so good and they may condemn any system that does not give them an opportunity to get ahead. The system has worked and is seen to be fair. I am not saying that the previous system was not fair but the people did not know where they stood. When one cannot explain to someone how others have got ahead one is in great difficulty. Not only is justice done but it is seen to be done and I am sure that the vast majority of those on the corporation housing list will agree that it is fair.

There is no such thing as a waiting list for admission to residential homes. Recently I asked the Minister a question regarding the number on the waiting list but he said there was no way of knowing because people apply to different places. I am suggesting that we establish a points system, one that will give points based on the degree of handicap, behaviour disorders, disruption of family life and family circumstances. In that way we would know the extent of the problem and we could tell people how long they would have to wait. We should associate that with a central clearing house that could decide to what place they should assign a child.

There is no reason why we cannot have a points system. I agree that it is impossible to quantify disability accurately. The city medical officer in Dublin awards points on the basis of medical evidence submitted to him in respect of people who are seeking houses from the corporation. He is responsible for people getting medical priority by awarding points in respect of disability in the household. In respect of thalidomide deformities and various disabilities, the points system has been introduced successfully. The points system is working successfully in Britain for admission of the mentally handicapped to residential homes. There is a precedent for it, we have seen it can work and there is no reason why we cannot introduce it here.

It could be worked by setting up a panel of doctors and social workers in each health board area. They would examine each child, set up a register of every mentally handicapped child and award points on the basis of the handicap, behaviour disorders, disruption of family life and the family circumstances. It is essential that these places be allocated on the criterion of need and a thorough and objective assessment of such need should take place. I agree that a points system will not be perfect but it can be applied equitably in the medical domain as was shown by the thalidomide cases and in instances where the city medical officer gave priority where there was medical evidence put before him.

The establishment of proper priorities by way of a points system must take place in the context of the health boards accepting their full statutory obligation to take care of the mentally handicapped by introducing a special annual budget for this purpose. To date the health boards have been content to await the efforts of the voluntary organisations to raise funds and to produce plans for day and residential facilities. While the health boards are happy to throw the burden on the voluntary organisations, it is the thousands of mentally handicapped persons and their families awaiting the provision of institutional care who are suffering. Some 44.1 per cent of the mentally handicapped are living outside residential care—I am not talking about the mildly handicapped people. Children are growing to adulthood in residential homes and are staying on because there are not enough places for them. The number of places for mentally handicapped people is getting smaller each year. The large number of mentally handicapped outside residential care does not mean that there are adequate day centre facilities for them. These are devoted mainly to the mildly mentally handicapped. I must emphasise again that I am talking about the moderate to profound mentally handicapped— the 44 per cent figure. On the basis of the 1974 census we are short more than 5,000 places in respect of residential care for the mentally handicapped.

Voluntary organisations cannot be expected to cope with the financial and administrative strain of providing additional places, much less to handle the demand for the additional day centres and for general programmes aimed at the updating of the standards of all our institutions for the mentally handicapped. The voluntary organisations cannot be expected to cope with such a tremendous demand. The only organisation that can cope with it, one that has an obligation to do so, is the State. It can produce the finance and the administration. It is up to the Department of Health to allocate a special annual budget to each health board. At present area health board expenditure for the mentally handicapped is subsumed under a number of headings so that there is no way to gauge the precise amount of finance available in each area. The system must be changed.

We have no places for multiple mentally handicapped. Special places are needed for the treatment and care of these people. I would envisage each area health board being asked to compile a register of the mentally handicapped in their area. On the establishment of such a register each person could be assessed on the basis of the points system I have outlined. A special budget could be provided on an annual basis to meet each health board's requirements for day and residential care as well as a capital building programme to provide the extra places needed.

I wish to comment on the facilities available at day centres. I do not deny that efforts have been made to provide good facilities for such centres but there is also the question of getting a mentally retarded child to such a centre. How does he travel to the centre? He may have to travel on a few buses and some of the children are so retarded this may not be possible. The facilities may be there in the centres but the transport problem is a serious one. What happens in the case of a mute child who must take two buses to get to the centre? Such a child could quite easily get lost. Some parents have complained that the children are regressing at the centres because of inadequate facilities.

We should talk about improving the day centres as well as providing more residential places for the moderate to the severely mentally handicapped. Our target must be to cater for all such people in each health board area within a period of three to five years. This can be done only by having a register, by having a points system and by providing a special budget for the purpose. The register would not only be an effective way of planning for the provision of sufficient facilities but it would let the parents of the children know where they stood on the list. If the health boards were to adopt a special budget, for the first time the parents would see some light at the end of the tunnel, they would realise that something was being done for them. Most of us here have come across cases of parents seeking places for badly handicapped children. This poses enormous problems especially in large families where they are unable to cope.

We are refusing to face up to the fact that there is an onus on the State to provide for such cases. I see no reason why health boards should not be directed to take an active role in ensuring that adequate facilities are provided for the care of the mentally handicapped in their area. They should accept this responsibility.

Planning and building must commence now. In the meantime, the points system would ensure that places that are available would be granted to those in greatest need. Although the specific details of the programme I have outlined tonight might be open to some change, the introduction of the points system, the register and a special budget for each health board area would help solve the problem. I know this will cost money but I have no doubt the Minister will be sympathetic towards it.

I realise that the health boards accepting their statutory obligations in this regard will mean more money from the Department. I know the Minister must have a set of priorities. I accept that fact and appreciate it more than anyone, but he will agree that the people most in need should be catered for. We have to provide the money. If we are to accept the slightest veneer of self-proclaimed Christian society, we cannot stand aloof from this. We must face up to our responsibilities to the thousands of mentally handicapped in need of care.

I accept the Minister is concerned about the problem. He has indicated that the whole area of mental health legislation is under review and he intends to improve it. This would be a step in the right direction. I know he wants to do something about the waiting list; I am not blaming him for that. He has done a tremendous job already as Minister for Health and this calls for my congratulations. I was saying earlier what a person can do as Minister for Health without spending one penny and the Minister has done this.

Where the present day centres are unable to cope, we must provide better services. This motion provides the Minister with an opportunity to take swift action. He might mention all the new places that have been provided since 1973. The mentally handicapped are living longer due to the tremendous technological advances in the last ten to 20 years. Prior to the antibiotic era many of them died and now they live into late adult life.

The Minister may quote the fine work being done by voluntary organisations. I praise these organisations for what they have done but it is not enough to pat them on the back and say they have done wonderful work. We have to come to their aid now. They are living in difficult times. They are facing growing problems and are unable to cope. They want a better system. They want more help. We have an obligation to help them. They have carried this burden for us over the years and we cannot praise enough all the work they have done. We would be burying our heads in the sand if we do not realise this.

The Minister cannot ignore the plight of the thousands outside residential care who are in desperate need of accommodation. We have to face up to this. There are practical and financial obstacles to health boards assuming their statutory obligations. I do not think there are obstacles to compiling a register, establishing a points system, letting people know exactly where they are on the list and having a central clearing house. That can be done without any great effort and would be appreciated by all.

If we refuse to face this fact now, if we say "no, we will not do it, because we are doing wonders as we are; the State has provided so much and voluntary organisations have done wonders," then we are really saying that we do not give a damn about the mentally handicapped. I do not care how we wrap it up. We can say: "Feasibility problems""enormous difficulties for the Department""scarce resources" or any other bureaucratic euphemism to excuse our inaction. We may try this but I do not think it will work. We are only fooling ourselves if we approach it that way. We have to realise that the mentally handicapped do not have the political muscle to force change. This calls for our legislators to move in and see what we can do on their behalf. This is not a party political motion but one we should all be concerned about. I earnestly appeal to the Minister to give it consideration.

What if we just say "Let them be. Let them stay at home"? Are we saying euthanasia is the answer? That is what we are implying if we ignore our obligations to the mentally handicapped. Should we do that? If we do not accept our obligations to these children, if we leave the 4,000 at home living in terrible circumstances, if we do not provide residential care for them, we had better be honest and say "We will introduce euthanasia" and that will solve the problem immediately.

Dr. Woods

I would like to congratulate Deputy O'Connell on introducing this motion. We all agree that the care of the mentally handicapped is and should be a priority area for every one of us. However, the Deputy wants the State to fulfil its statutory obligation but I want to know how he sees the State fulfilling that statutory obligation. In this motion he calls on the Minister for Health to devise a system of differential grants for the mentally handicapped taking account of the degree of handicap and the extent of home care required. In principle most of us would agree that there should be some rational system of deciding the kind of aid required, the extent of aid required, the difficulties associated with particular homes and degrees of handicap. How to allocate and apply such differentials is another question. I very much doubt if a system which is paralleled in the allocation of housing is the right answer for dealing with such a sensitive and delicate area as the allocation of priorities among various mentally handicapped adults and children. Nevertheless, in principle I agree that there should be some rational way of doing this. In contrast, currently there is such a rational way and these factors are taken into account in the allocation of priorities.

This leads us to the second point, that is, that powers of admission to and discharge from all institutions for the mentally handicapped be under the control of a panel of public health psychiatrists and social workers employed by the health boards. Here we have to link these two points. The differential grants must be available in relation to the degree of handicap and the admission to and discharge from all institutions being under the care of a special board raises a number of questions. The first is this: Who currently provides the aid and assistance for the mentally handicapped? Who has provided it over the years? My information is that 90 per cent of the care is provided by voluntary organisations. Yet, in Deputy O'Connell's proposal I see no reference to the inclusion of voluntary organisations on the suggested board. Consequently it is very difficult to see how such a board could be effective in the first instance or realistic in relation to the people who are doing the work. In management terms it would be an extraordinary arrangement, because the people doing the work and administratively organising it, and who have done so over the years, seem to be excluded from this arrangement.

The people doing the work are the Daughters of Charity, Glenmaroon, St. Michael's House, St. Joseph's in Clonsilla under the Daughters of Charity, St. Teresa's in Blackrock, St. Vincent's in Limerick, The Sacred Heart of Jesus and Mary in Monasterevin and Delvin, St. John of God Brothers, Drumcar, Celbridge and other places and the Rosminian Fathers. I could go on with many more voluntary groups. The administration of the St. Michael's House group is a very good example for all of us in relation to the sophisticated approach of a voluntary organisation. Their operations are widespread and their administration is very directly related to the needs of the organisation. They have centres at Belcamp, Raheny, Clontarf, Ballymun, Grosvenor Road, Drimnagh, Templeogue and Goatstown, the administrative headquarters. They have adequate care units, long-term training centres, adolescent groups, group home children, special care units and a range of other provisions for the mentally handicapped.

Those people carry out their work in a very dedicated fashion and in a comprehensive way. I have visited many of those units and have found the standard of their administration leaves very little to be desired other than that they have more priorities to be met and they have further work to do. I cannot see why people like those need another board separate from them to organise and co-ordinate admissions to and discharges from all of those institutions.

I believe there is scope for greater co-ordination of the work of all the voluntary organisations. If there is to be such co-ordination it must be a coalescing of the people directly involved in the work. That is not to suggest that the people mentioned here, the public health psychiatrists and social workers, are not providing very valuable services under the health boards. When we are talking about co-ordination we must include in it the people who are currently doing the work.

I find that co-ordination among those institutions is not as bad as has been indicated. The health boards are currently responsible and, to a large degree, they fulfil their statutory obligations but they are not able to do everything. I find there is a ten-year plan for each area. I do not know how much further Deputy O'Connell wants the planning to go. In the plan for each area the voluntary groups are invited to state what they will do as part of the plan. This shows very clearly what is missing in relation to the State fulfilling its statutory obligation. The operation and administration of the service by the health boards is highly co-ordinated. The voluntary organisations provide plans.

I also find there is a budget for each voluntary group, especially the major groups carrying out large and diverse works in this area. All the voluntary groups are invited to fit their own budget in and indicate what the priorities are in their budget. Each voluntary group prepare and put forward a budget as part of the overall health board area's requirements.

I agree with Deputy O'Connell that in regard to our overall budgeting we should give more attention to the amounts of money provided for the mentally handicapped in our annual budgets. This is a global matter. Deputy O'Connell has rightly raised the question of providing additional facilities, accommodation and housing. Those facilities require capital. There are great needs at the moment. I find, when looking at the organisations involved here, that they need junior care units, adult care units, hostels and group homes, sheltered workshops and special adult care units. Those organisations are at the moment putting forward their requirements in regard to facilities for the future.

I agree, and I am sure the Minister also agrees with Deputy O'Connell that there are many things which we will have to do. I know from experience that the Minister has a great interest in this area and in the care of the mentally handicapped generally. I am, therefore, confident that he will do all in his power to increase the resources which are available for the type of specialised units and facilities that are needed for the mentally handicapped and which in many instances have been very clearly specified.

With regard to co-ordination much technical co-ordination goes on at the moment with regard to the mentally handicapped, I understand that even this area is to be improved further in the future. Finance is the greatest problem. There is a very fundamental question raised in relation to this motion about the mentally handicapped. It is not, as Deputy O'Connell said, a political matter. It is a question for everyone in Dáil Éireann individually and collectively and in relation to our work outside in our communities and as a people. The question is: How much are we prepared to give to the mentally handicapped? How much are we prepared to give to back those people who are doing the work and also to provide, where necessary, directly through the State, the facilities which cannot be provided by the voluntary organisations? How much are we prepared to allocate from our annual budget? How much is anybody here prepared to set aside? How much extra are we prepared to pay if we have a special allocation, either individually or collectively, for the mentally handicapped?

As Deputy O'Connell said, there are certainly great hardships and great needs. I have come across such cases myself in the course of my work. However, Deputy O'Connell tended to over-emphasise the need for residential care. Indeed, one of the things that has always struck me is the fact that so many parents are so anxious to devote so much of their time to their mentally handicapped children, requiring at times from the State and the societies help in easing their burden by providing specialist teaching and helping them in coping with these children. I am thinking now of non-ambulent mentally handicapped children. In such cases parents put endless hours into caring for these children.

One of the problems that arises here stems from the fact that one cannot mix the non-ambulent with the ambulent because the former would quite literally be walked on and so a specialist unit must be provided for these children. Now, as I say, I have been very impressed with the care and attention lavished on these children by parents but I would like to see specialist assistance provided for them in specialist teaching and training units.

One of the edifying results of past efforts has been the success of the services so far provided and here I would like to record my commendation of those who preceded me here. A major problem now is the increased life span of the mentally handicapped. They are now being trained to work. This is the result of a tremendous input of resources in terms of both manpower and money. But this creates a problem because, since these people are now living longer and living better lives, they need to be accommodated at a more sophisticated adult level. This, in turn, provides a new challenge for society—a challenge we should be prepared to meet.

Deputy O'Connell referred to accepance and change in attitudes. Acceptance by society of mentally handicapped who have been to a large extent rehabilitated and brought to a level of participation which no one would have envisaged some years back will become more important as time goes on.

Here, I would make two suggestions. First of all, we should look at the possibility of mixed workshops, instead of just sheltered workshops. There should be a mix of the normal and the mentally handicapped. I am speaking now from personal experience. In Kilbarrack the old folks' home was originally designated as a sheltered home, implying that those for whom it catered would need a great deal of assistance. Only about 25 per cent would, in fact, fall into that category. The remaining 75 per cent were fully mobile and active. The result is that a mix like that leads to a more normal atmosphere and a healthier environment. In regard to the mentally handicapped then we may now be at the stage at which we should be looking at the possibility of mixed workshops.

The second point is the possibility of extending employment premiums to employers prepared to provide employment for the moderately mentally handicapped. I understand some of these premiums are available but I should like to see them publicised more because we will need more opportunities and outlets for those who have been trained to a fairly high degree by the organisations catering for them.

I agree with the sentiments expressed by Deputy O'Connell. We should do more for the mentally handicapped. We should be ever vigilant in their interests. We should certainly care for and about them. We should be forever examining objectives and provisions to see what more can be provided for them. From the point of view of timing, we should at this juncture be giving the whole problem top priority.

I would not support the motion because I have every confidence in the Minister where this problem is concerned. I know, again from personal experience with constituents, that he is giving urgent attention to the whole matter and I am sure he will continue to do so.

I would not support the motion because the mechanisms suggested smack too much of a misguided bureaucratically controlled system which would not and could not relate directly to either the people who are doing the work or to the work itself. I do not believe the suggestions made are necessary at this point in time. That is not to say we cannot improve the system. There is always room for improvement. I have every confidence the health boards as they evolve will meet requirements in this regard. Nothing should be done to discourage the voluntary organisations which are providing 90 per cent of the care at the moment. In contrast to Deputy O'Connell, I would rather build on what is there and expand the operations of the voluntary organisations. I would rather back them, back the Minister and his Department and the health boards in the good work they are doing and provide more money for the work they are doing.

Mr. Boland

It was either in the 1974 report of the Medical Socio-Research Board, to which Deputy O'Connell referred, or in the earlier report of the Commission on Mental Handicap that mental handicap was defined as ranging from those so severely mentally and physically impaired as to require continuous lifelong care and supervision to those who needed only special forms of education or training during their formative years. That definition is a good one and gives an indication of the degree of the treatment and care necessary to be introduced in this wide-ranging field.

The wording of the motion follows almost exactly the recommendations made by the Association for the Rights of the Mentally Handicapped circulated to all Members some weeks ago. The motion varies from the recommendation only in the form of words used, but the main recommendations in the motion are those in the association's document. The motion could best be boiled down to four separate sections which are brought together in a composite, and I will deal with them in their separate capacities. There are parts of the motion which deserve to be questioned but there are other parts which have extreme merit and which we need to look at carefully.

It is appropriate to discuss the mentally handicapped at this time when legislation is due for revision within 12 months. What the motion is endeavouring to express are the grievances and dissatisfaction of some of the parents and relatives of mentally handicapped children either in or out of residential care at the difficulty in obtaining information on the financing of the system and the degree of care being provided. That is an area we can well examine.

In regard to the first part of the motion, Deputy O'Connell said the wording was a little ambiguous. I am not sure whether the motion calls for differential grants to the voluntary organisations who operate residential institutions or for differential grants to parents who keep their children at home. The latter grants are at a flat rate of £25 per month. My understanding of the situation is that the voluntary organisations who operate the residential institutions do so under a system of differential grants and this to me would be one of the main areas where the members of ARMH were most concerned. They are concerned particularly at the situation obtaining where one institution would get £X,000 and another would get £Y,000. Where institutions are the same size, they felt this appeared to indicate that the stronger the organisation the more likely they were to get money from the Department.

My inquiries lead me to believe that in recent years there has been a system of differential grants paid depending on the type of institution, the type of staff structure and the type of care provided in residential institutions. For that reason I am at a loss to understand the relevant portion of the motion. There is merit in the second part of it which suggests there should be a system of differential grants for home care. As I have said, this was at a flat rate of £25 per month to parents of all mentally handicapped, irrespective of income, who kept their children at home. There might well be consideration given to increasing that grant and to the introduction of a graded system of grants to parents, depending on the degree of incapacity of the child being kept at home.

If that is the purpose of that part of the motion it is laudable and I should like to be on record as supporting it. In relation to differential grants to voluntary organisations, that system is in operation already, but parents of children who want their children in care do not seem to understand that that is operating, and what we want to ensure is that greater publicity will be given so that there will be public awareness in regard to the basis on which different institutions are being paid, how one institution is being paid more per capita than another.

The voluntary institutions themselves came together and said that this is not operating, that some are giving a much higher service, are devoting more staff to the service than others, that some have a more detailed capital programme. What is needed therefore is to explain to all involved in the care of mentally handicapped the basis on which grants are paid to voluntary institutions. We must also go out of our way to ensure that the feeling does not emanate from us tonight that anybody is being critical of the role played by voluntary organisations who in the past have done magnificently a selfless, thankless job at a time when the level of financing and other support was not as high as it is today. It would be too bad if the impression went out, now that the service has developed largely through these organisations with the help of State subvention, that there is a move afoot to transfer the service to the control of the health boards. I do not think that is generally what the House wants or that it would be a good thing, and I do not think it is what the people want. The role played by the voluntary organisations has been tremendous and let us hope it will remain so.

As far as grants to parents of children in home care are concerned, it is important to distinguish that there are parents who have children in care at home and that it has an effect on the remainder of the families. It has been suggested, on the other hand, that some of those in residential care are so mildly affected that they could equally be kept in the community. However, even a mildly handicapped child should not be kept in the community if the parents are unable, through financial circumstances, or unwilling, to look after the child. Consequently, there will be a number of mildly mentally handicapped in residential care because their own families are unwilling or unable to support them. In that instance it is right that the State, through whatever agencies, should become involved in the residential care, if necessary, of that mentally handicapped child.

The motion calls for powers of admission to and discharge from all institutions for the mentally handicapped to be under the control of a panel of public health psychiatrists and social workers employed by the health boards. Concerning admissions, I agree tht it would be very welcome if an independent body were to be in charge of deciding on the admission of patients to residential care. At the moment the vast bulk of beds, especially in special centres, are provided by voluntary institutions. I wonder how practical it is to suggest that a group of people involved in the public service should be the final arbiters on the type of patients to be admitted to voluntary institutions operated by other people, though with State funding and finance. Perhaps it would be a good idea if a panel were to be set up composed of people involved in the public service and people representing voluntary agencies and representatives of the general public, laymen or representatives of the parents or the health boards involved. If that sort of thing is being suggested I welcome it. It would help to inform and educate the public as to the extent research is carried out before a patient is admitted or admission is refused.

It is probably impractical to suggest that an independent body, having no connection whatsoever with the institution in which a patient has been hospitalised, would fairly or adequately be able to decide when that patient should be discharged. It does not seem to be feasible that an independent group, no matter how highly trained, could say that a patient should be discharged from an institution unless that group had been involved in the therapeutic care of the patient or unless they were involved to the extent that they could decide that an institution was no longer able to cater for the patient and that he would have to be moved to an institution catering for patients of a more disturbed nature.

There are real difficulties contained in the suggestion in what I refer to as part (b) of the motion. In the last few years the question of the admission and discharge of patients to and from voluntary institutions outside the public service and the health boards was discussed at the behest of the Department of Health and a committee were set up. They went into the question of the standards for deciding on the admission of patients to voluntary institutions, the sort of patients that should go into various types of institutions and which institutions were capable of catering for moderately and severely handicapped people. A standard for decision on admissions was drawn up by the voluntary bodies, the health boards and the Department at that time.

All the association are looking for is an assurance that this sort of thing is being done and that there is a degree of fairness. I have met some of these parents and they believe, rightly or wrongly, that there are in certain institutions people who are mildly handicapped, while people in the same area who are severely handicapped and in poorer circumstances are not able to gain admission. I find that difficult to accept but I also find it disturbing to think that parents and people involved who are anxious to help in the care of the mentally handicapped should think that such a thing would happen. To the extent that this part of the motion can bring it about, it would be a good thing to get home to parents and those involved that there is a degree of fairness and equity, irrespective of income and social standing. I hope the Minister will deal with that point.

If such a panel in respect of admission were to be set up, it would be important that it should not bring about delays. Social workers have been pressing for a points system and they made a submission which was discussed some time ago. Deputy O'Connell said that the social workers had been suggesting a centralised waiting list. My idea of such a system is that the person who comes to the top gets the first bed available. It would be unthinkable and unworkable if it were suggested that a patient from Wicklow would be assigned to residential care in Limerick, from the point of view of the patient's happiness and the likelihood of visits by his family. It would have to be on a regionalised basis. A body operating in the way suggested might bring about delays. It is fair to say that adult beds for the mentally handicapped become available only on the death of the present occupant and as soon as a bed becomes available everybody is looking for it. It would be ridiculous if some beds for the adult mentally handicapped were to lie idle until such time as an assessment board could decide on who should be assigned to that place.

I am in favour of a points system as long as it will work. The House knows enough about local politics to know how difficult and complex a points system is in relation to the allocation of public housing. The authority of which I am a member were the first public authority to introduce such a points system. During the course of the last six or seven years we have had to revise our system at least once every six months and sometimes twice during that period in order to take account of various areas which did not appear to be receiving equity treatment in the system as originally devised. At the time we thought the original system was the fairest possible. If a points system in relation to housing is as complex as that, how can we devise a points system under which we can grade the different degrees and aspects of mental handicap? The social workers have put forward a system which they believe will work. When a points system was introduced in a much simpler area it required constant attention and revision. If a points system will work it will prove to the public that the system is fair. It is difficult to decide into what category an applicant for a place would fit without having carried out previous assessment of his behavioural difficulty and I do not see how that can be done by a board unless the patient has been under their observation for some time in a day centre or residential centre.

The motion calls for the health boards to be instructed to undertake their statutory obligations for the care of the mentally handicapped by providing a special annual budget for this purpose. This part of the motion is slightly different from the suggestion that the national budget should make greater provision over the next number of years to see that standards for the care of the mentally handicapped are brought up to an acceptable level. We all know very well that the health boards are as controlled by the Department of Health as the local authorities will, I am afraid, be controlled by the Department of the Environment. The Department of Health decide on the level of spending of any health board in any one year and they decide directly on the level of finance to be made available to each of the voluntary institutions. If a call is made to increase the level of spending then it should be made to the Department of Health. I do not believe the Minister will disagree with that. Within the allocations made to the health boards there should be a separate budget for the mentally handicapped and the mental health services generally. I think some health boards do this already. In that respect it is worth mentioning that the effort being made by the Eastern Health Board to distinguish between the psychiatric service and the mental handicap service is laudable and worthy of our support.

In 1967, 6.3 per cent of the money for capital services was devoted to the mental health service and in 1977 the figure was 12 per cent. In the period the figure was doubled and in some years it was as high as 20 per cent. In 1967, 7.7 per cent of the money was allocated to the mental handicap service and in 1977 it was 8 per cent. That share has remained static while the capital programme has almost trebled. Since the base year of 1967, the share for current expenditure has remained static. The Minister should pay attention to that area and should try to increase the share as soon as possible.

I should now like to refer to the main areas which cause dissatisfaction and are the reason for the submission of this document. The association of concerned parents and friends of the mentally handicapped feel that the health boards have abdicated their statutory responsibility and have transferred it to the voluntary agencies, that the more the voluntary agencies do the better the health boards like it. I agree with the parents that that situation is wrong. It is right to insist that the health boards should be more aware of, and do more work for, the mentally handicapped. Deputy O'Connell quoted some figures from the 1974 census but I have later figures which were given to me in answers to questions by the Minister. There are 5,000 places for the mentally handicapped in special residential centres and a further 2,700 places in general psychiatric hospitals. Those figures compare with the figures for 1974, though it should be pointed out that there are 710 new places in special residential centres. Of the 5,000 places in special residential centres, only 216 are provided by the health boards. All other special residential beds are provided by voluntary agencies. The health boards ought to provide more than 200 beds. In the general psychiatric hospitals there is often intermingling of psychiatrically ill patients with long-and medium-term mentally handicapped patients in the most unsuitable conditions, and they are nursed by staff without special qualifications. Many of the public mental hospitals are antiquated and unsuitable for the care of long-term mentally handicapped patients.

Deputy Woods referred to the numbers attending day centres and it is interesting to note that the present number is 5,731. Great strides have been made in that field through the efforts of the voluntary agencies. I welcome his suggestion that mentally handicapped patients should be allowed to mix more with those in physical and mental health in the special centres.

The total number of registered nurses with training in the care of the mentally handicapped is 723. We all know that many of them are not actively involved in caring for the mentally handicapped. Many of these nurses have married and left the service and many more are doing general nursing. Therefore, the number of specially trained nurses is smaller than 723 for 8,000 patients in residential centres.

In 1966 the Commission recommended making the best use of the facilities and staff then available in residential centres for children and stressed the desirability that these centres should not be encumbered with adult cases.

An Leas-Cheann Comhairle

The Deputy has two minutes.

Mr. Boland

Many people are concerned with the lack of places for young mentally handicapped persons. When they reach puberty they become unsuitable for retention in the centres provided for young people. As there is no other place for them they remain in the centres. This means that there arae no vacancies for younger children. As Deputy O'Connell says, half of those outside residential care are between five and nine years of age. In addition, the voluntary bodies are now experiencing staffing difficulties.

I agree that there should be differential grants for mentally handicapped children being kept at home. The system of payment of differential capitation grants to the institutions should be publicly clarified. I agree with an independent panel of assessors if the voluntary agencies and the public are involved and if it can be shown to work. I agree with a points system if it can be shown to work. There is a need for more specially trained staff for the therapeutic care of the mentally handicapped. There is a need for the health boards to provide more places for the mentally handicapped. There is a need to relieve the blockage in the child care centres so that young adults can be moved to other centres. There is a need to reassess some mildly mentally handicapped patients at present in residential care. There is a need to keep the parents and the public informed.

This is an area which requires special skills and the compassion and patience of all those involved. The public should be made aware of the situation and of the need for increased expenditure, and it is our responsibility to ensure that it is done.

Mr. Haughey

Does Deputy Boland mean a points system for each home or a national points system?

Mr. Boland

It is not my motion.

Mr. Haughey

The Deputy favours the points system.

Mr. Boland

I take it as being a points system for the assessment of each person.

Debate adjourned.

The Dáil adjourned at 8.30 p.m. until 10.30 a.m. on Wednesday, 30th November, 1977.