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——