Dáil Éireann debate -
Tuesday, 25 May 1993

Vol. 431 No. 3

Private Members' Business. - Care of Mentally Handicapped: Motion.

Mr. Flanagan

I move:

"That Dáil Éireann, mindful of the lack of facilities and care for mentally handicapped people in the State and having regard to the urgent need to provide a much greater level of support for those caring for the mentally handicapped, including the provision of a comprehensive respite care scheme together with long term training and job opportunities by way of a national programme for the mentally handicapped, calls on the Government to honour specific commitments given towards providing an acceptable level of care for those with a mental handicap."

I wish to share my time with Deputies Noonan and Durkan.

An Ceann Comhairle

Is that agreed? Agreed.

Mr. Flanagan

I am pleased to have the opportunity of moving this motion on behalf of Fine Gael in the hope that those in our community with mental handicap are given the proper political focus they deserve. It is some time since the House debated the services available for the mentally handicapped, a group that has been almost forgotten by successive Governments during the past seven years.

The fact that these people are little better than totally abandoned is underlined by the confusion relating to numbers of persons within the State suffering from a mental handicap. We as a society are not even sure of the numbers of people in our community suffering from mental handicap. The last census of people with mental handicap was carried out in 1981 and indicated a population of 23,000. The Department now reckons this figure to be in excess of 25,000. There seems to be a difficulty in evaluating and qualifying the numbers involved and it is impossible for any problem to be tackled in a comprehensive manner while we do not even know the numbers of people with whom we are dealing. In this regard it is of extreme importance that an information system be set in place which will co-ordinate and liaise between the Department of Health and the many voluntary and statutory agencies, which provide a service for people with a mental handicap so that up to date knowledge and information is at the ready at all times.

It is estimated at present that of those 25,000 people, there may be up to 3,000 without a proper level of service. This figure I understand was recently queried by the Department of Health which officially estimates the figure to be half of this. It must be acknowledged, however, that the numbers are increasing by virtue of the fact that people with intellectual disability are now living longer than was heretofore the case. For example, a moderately intellectually impaired Down's Syndrome sufferer 20 years ago would live on average up to the age of approximately 25 years. Such people are now living well into their fifties.

There are a number of serious emergencies that need the immediate attention of the Minister for Health if he is to engage in any serious effort to tackle the problem. To date, we have heard little more than lip service from the Minister and his statement of an extra cash allocation following this year's budget needs to be examined in some detail. During the past number of weeks the Minister, accompanied by a heavily powered public relations team of advisers and minders, has succeeded in creating an impression that the extra funding made available would ease the crisis in the mental handicap area. Sadly, the reality is far from this and the Minister is either insincere or unaware of the facts. It is my contention — I will give him the benefit of the doubt — that he is totally unaware of the extent of the urgency of the problem.

We need to accept not only the need for a five year plan, but that there exist throughout the country emergencies that need immediate attention. Is the Minister aware of the total absence of child community services in some areas? Is he aware of the ineffectiveness of expert assessment teams that can quantify the extent of suffering of people with mental handicap? Is he aware of the fact that in many hospitals, adults are blocking child beds, leaving children with no residential services?

In short there are three strands to the problem that must be addressed by the Minister. The first relates to those with a mental handicap living in psychiatric hospitals. Some 1,550 people fall into this category, many of whom are there because there is no alternative source of care available to them. As a society we appear to have confused people with mental handicap needing psychiatric treatment and those who do not. It is estimated that many of those 1,550 should be transferred to the community-based service. This transfer can only take place if facilitated by expanding considerably the community-based mental handicap services.

We all accept the need to switch from institutions to community care, but the question must be answered as to what will happen to the 400 full time clients of, say Portrane, an institution recently under the spotlight for all the wrong reasons. A detailed inquiry, while failing to establish proof of certain allegations of a very serious nature, nevertheless pointed to a series of general abuses of patients which must not be taken lightly. Morale among the staff of St. Ita's is at an all time low and the problem for them is one of lack of resources and the need to increase funding and improve the general physical structure of the hospital. While I agree that it is inappropriate to admit persons with mental handicap to psychiatric hospitals unless psychiatric treatment must be administered, the stark reality remains that many of the mentally handicapped in our institutions are deeply disturbed requiring treatment in a secure, closed environment where they will receive appropriate care, which I doubt is the case at present. The incoherent and unco-ordinated manner of reporting by the inspectorate of mental hospitals leaves much to be desired and is a matter to which the Minister must turn his attention very soon.

In the Programme for Economic and Social Progress in 1991, considerable emphasis was placed on the development of community-based health services. This made specific reference to those with mental handicap, but, unfortunately, both the letter and spirit of what was contained in the programme has been totally abandoned by the Minister and his predecessor. It should be pointed out that his Fianna Fáil predecessors since the signing of the programme fared no better.

A second category of mentally handicapped people who need attention are those living with elderly parents. Such parents quite rightly fear for the future of their children as they are no longer able to provide the level of physical care and attention of earlier years. In many cases parents of people with a mental handicap have become extremely distressed and depressed as they wonder about the future of their children without them. The absence of a national programme to address the accommodation needs of people with mental handicap has produced an ever increasing number of people in severe difficulties. An agreed number of places must be provided for each region to lessen the burden of care on ageing parents in the community.

The third matter mentioned in the motion relates to ongoing training and work opportunities. This area has been seriously hit by changes in the funding under the European Social Fund. We have had no response from any Minister on the change in funding that will place people caring for those with mental handicap at a disadvantage. Many people with mental handicap had an opportunity of attending training programmes of some substance linked to European funds.

However, programmes which received funds from the European social funds have a fixed training period and trainees on completing the programme have very little in terms of opportunity for work, sheltered or otherwise.

There is a need for long term training and employment placements of a type we have not seen to date. Such is the trauma and anxiety of carers, parents and guardians of those with a mental handicap that specific case summaries must be provided. Of the large list of case summaries available I will select five to illustrate the need for the Government to take this matter seriously.

The first is a 23 year old mildly mentally handicapped, manic depressive man, with gross obsessional traits. His 74 year old mother lives in constant fear as her son refuses to attend any service and has assaulted her on a number of occasions. As a result of one assault at Christmas the son was remanded to the Central Mental Hospital, Dundrum, and is now in St. Ita's on a temporary order. He needs a secure ongoing residential placement.

The second case relates to an eight year old moderately mildly handicapped boy. He was dismissed from Scoil Eoin in November 1992 and is being looked after by his 61 year old father as his mother has left the home. He presents behavioural problems and, combined with his father's inability to cope, is in urgent need of placement. He has been refused a place in Stewart's, St. Augustine's, St Raphael's and St. Mary's due to his unsuitability for these services.

The third case relates to a severely handicapped 11 year old boy with epilepsy and physical handicap who is unable to feed or take care of himself. He is currently in Madonna House and in need of urgent placement.

The fourth case relates to a nine year old boy functioning in low mild mental handicap range who comes from an unstructured family setting. He is out of school and has appeared before the courts. Several school placements have been sought but none has materialised. This boy needs a structured setting and an urgent school placement.

The fifth case relates to 23 year old twin girls with mild mental handicap and speech defects. Their mother is unwell with diabetes. The girls have assaulted the mother and other family members. They are at risk sexually from a local man and the gardaí are in regular contact with the Eastern Health Board vis-à-vis this serious issue. There is no residential place available for these girls.

The position is so serious that I could spend the entire debate referring to case studies submitted to the various health boards.

There is a crisis in the residential services available in the Eastern Health Board area with over 1,000 people on a waiting list for residential and day care service. In the mid-western area there are almost 400 people without a service as the latest estimate for numbers of places in both day care and residential centres amounts to almost 3,000. It is estimated that an extra £22 million is needed in the Eastern Health Board region alone to meet the needs of that area. The Minister will acknowledge that he provided an extra £8 million in the budget to cover the entire country.

There exists, however, a certain amount of confusion and uncertainty as to the manner in which these funds are allocated. The Minister provided £8 million on top of the £6 million making a total of £14 million.

The widely respected "Needs and Ability" report of 1990 presented a frank and stark picture of the type of funding necessary to provide a reasonable level of service for those intellectually impaired. It sought funds to the order of £50 million over a five year period or £10 million per year. This was extended and agreed in the Programme for Economic and Social Progress where the figure was revised, extending the period from five to seven years with an average of £7 million to be spent per year.

The reality is somewhat different. In fact the allocation was shameful when compared to the express promise in the Programme for Economic and Social Progress, signed by all the social partners as a blueprint for Government action and hailed as the consensus document of the decade. What happened bears noting. In 1990 the total of £1 million was allocated, in 1991 this was doubled to £2 million and in 1992 £6 million was allocated. This total was £9 million where £21 million was promised which is less than 50 per cent of the express commitment given. This year the allocation after four years will exceed £22 million total, while the agreement provides for £30 million at this year's stage. Is this a commitment of which we can feel proud? Speaking of promises and making specific reference to broken promises. I would like to take this opportunity of quoting for the benefit of the House, a document in my possession entitled “Trust into Politics — The Labour Party,” with which I am sure Deputy Ferris is familiar and he may have contributed to it. This is a rather lengthy document and for the purposes of the debate I will be brief. It states:

Trust has been shattered in the last few years in different ways. The era of scandals has led to a demand for better and more open Government. The era of broken promises has opened up a mandate for more honest Government. And the era of run-down essential services has created a crying need for more effective, and more socially just Government.

This document is aimed at addressing those needs....

We believe that responsibility goes hand in hand with partnership — and that this is the reason the politics of partnership can bring a new energy to our community and a new level of trust to our politics.

This document is signed by Dick Spring, Leader of the Labour Party and now Tánaiste.

The first page of the document states:

That Labour's proposals include the provision of £25 million next year and "catching up" on the "Needs and Abilities" Report prepared by the last Government and effectively shelved.

Mr. Ferris

What date is on the document?

Mr. Flanagan

There is no date on it but it was produced in November 1992, not that long ago. We had no budget at that time. The amount allocated by the Minister is, as he will readily admit, considerably short of this sum and financing is now substantially behind the £50 million target for the four-year period 1990-94. The Labour Party stands accused of outright cynicism and political manipulation of a disadvantaged group on this matter. The thousands of carers for those in the community with a mentally handicap have been cynically abused by the Labour Party who is guilty of a monumental breach of trust in this instance.

Recently in the course of a Seanad debate, the Minister stated that from the information currently available within the various health boards, there is a need for about 1,300 residential places and 1,400 day places for about 2,200 people in need of such treatment. In addition, he spoke on the need to expand an early intervention service to develop the potential of every child, to improve services for those with mental handicap still resident in psychiatric hospitals and to provide for the special needs of disturbed patients. The increased allocation for this year will allow a mere 70 residential places to be provided and only 200 day places are covered out of a total of 1,400. This has had the effect of casting a very poor reflection on the performance of the Minister for Health, whose commitment to date appears to be little beyond the window dressing of lavish press announcements.

One thing is clear arising from all the difficulties encountered by carers and those suffering in the mentally handicap area that there is a tremendous contribution by those in voluntary organisations throughout the country. No tribute or words can express the extraordinary dedication and absolute commitment of people to caring for an impaired relative, friend or neighbour.

The absence or any respite care for many families puts the whole matter in perspective. Recently the services were referred to by an expert in the area as the Cinderella sector of the health services. On the basis that Cinderella had at least one night out and a fairy godmother, it is an exaggeration to refer to it as the Cinderella sector.

The recommendations of the 1990 "Needs and Abilities" report must be used as a framework for action and an appropriate five year target plan for the implementation of the recommendations is essential.

The Department should formulate a scheme of arrangement with appropriate public agencies for providing self-supporting employment for people with a learning difficulty or intellectual disability. Greater emphasis should be placed on the recruitment, training and management of voluntary personnel and immediate attention should be given to the serious shortage of physiotherapists and speech therapists. The health board co-ordinating committees should report at regular intervals in relation to plans in the health board area. The Minister for Equality and Law Reform along with his colleague the Minister for Enterprise and Employment, must take upon themselves a role in training and generating employment for mentally handicapped persons capable of and suitable for employment within the community. In this regard, perhaps the Minister for Health might commit himself to setting up a Cabinet sub-committee to look at the matter. Indeed it might be a useful endeavour for the programme managers to undertake the setting up of a co-ordinated group to work between the Departments of Education, Health and Equality and Law Reform.

The review group heavily emphasised the need for short term breaks for those looking after mentally handicapped persons living at home. It recognised that many agencies developed a range of options including breakaway schemes, shared care schemes and planned crisis intervention services to assist these families. All these services are somewhat unco-ordinated and need to be expanded to areas of the country where they are not in existence at all.

I commend this motion to the House in order to put back on the rails a goal contained in the Green Paper on services for disabled people published 13 years ago which states that the ultimate objective is to help disabled people to realise their full potential to participate to the greatest extent possible in the life of the community.

The actions of the Minister for Health on this matter since assuming power have fallen considerably short of this objective and the behaviour of the Labour Party and its Leader, in particular, in the context of commitments and promises of funding in respect of the intellectually impaired has registered a new low in Irish political life.

I say to my 165 colleagues, that this position can be changed tomorrow night by supporting this motion in the name of Fine Gael and calling on the Government to raise the plight of the mentally handicapped on the political agenda.

Mr. Noonan

(Limerick-East): I support this motion so ably proposed by our health spokesperson, Deputy Charles Flanagan. I am glad to see the Minister is back in the House. He has had a long afternoon here and I appreciate the fact that he is attending this debate.

The Labour Party did very well in the last election. They won 33 seats, and the Parliamentary Labour Party has now its highest ever representation. The decision by the Labour Party to join Fianna Fáil in Government was unexpected. Many Members of the House, and in particular Members at this side of the House, would claim they had no mandate to do so. They fought their election campaign on a general platform of being the agents of change and many of us find their partnership with Fianna Fáil inconsistent with this objective. Be that as it may, to argue along these lines now is water under the bridge. Labour is in Government with Fianna Fáil and it occupies very powerful Government Departments, including the Department of Health.

Our debate tonight has a narrower focus than the factors that contributed to the formation of the last Government, but issues of principle relating to the behaviour of politicians at election time and subsequent to elections are relevant.

A Labour Party policy document to which my colleague has already referred, published in the course of the last election campaign entitled "Trust into Politics", commenced with a letter from the Leader of the Labour Party, Deputy Dick Spring, now Tánaiste, in the course of which he stated:

Because of the scarcity of resources, it is not possible for any responsible party to lay out a list of financial promises and commitments. To attempt to do so would not be credible and would be irresponsible.

Of course, we all support those sentiments. Deputy Spring went on to state:

For that reason we have decided to concentrate most of the limited resources we have already provided in our budget on two principal areas both crying out for trust and justice.

Our priorities are children and people with a disability. We intend to spend additional resources on these areas next year, and we are not apologising to anyone for the commitments we are making.

The Labour Party national director of elections, Mr. Barry Desmond, MEP, amplified this commitment in a letter to Mr. Gerry Ryan, General Secretary, NAMHI. The last paragraph of this letter reads as follows:

In the area of mental handicap there is a recognised crisis for the 25,000 with such a handicap. That crisis may relate to education, training, employment or residential care depending on family and individual circumstances. Among the detailed proposals in Labour's programme is the provision of £25 million next year to catch up on the "Needs and Abilities" report prepared by the last Administration and effectively shelved.

This commitment was repeated throughout the country by Labour Party candidates. The parents, friends, carers and service providers of the mentally handicapped had no doubt but that the Labour Party in Government would provide £25 million to fund the programme outlined in the "Needs and Abilities" report and that they would do so in 1993. Labour has reneged on this promise and by doing so has walked away from the most vulnerable group in society.

This has brought the politics of promise to a new low. The emotions of those closest to mentally handicapped persons were engaged by this commitment, their support was sought in the election, this support was given to the Labour Party, quite frequently across party lines, and Labour reneged when the day came to fulfil its promise.

Excuses that Labour is the minority party in Government will not wash. The Minister for Health is a Labour Minister. The Minister for Health was a Labour negotiator when the Programme for Government was drawn up. During the period of those negotiations the Taoiseach was the most vulnerable politician in this country and only the Labour lifebelt saved him. If Labour had asked for this money they would have got it immediately from the unfortunate Deputy Reynolds. They did not. They broke their promise and let down 25,000 persons who suffer from mental handicap.

Deputy Flanagan has dealt with the scope of the problem nationally. I am a member of the Mid-Western Health Board and I am familiar with the needs of persons with mental handicap in that area.

The Mid-Western Health Board produced a major report in November of 1992, the very month of the general election into the needs of the mentally handicapped in the region. Deputies have their own perspectives on this issue, but I would suggest that in terms of research, and in terms of the establishment of a database which clearly illustrates the breadth of the problem, the Mid-Western Health Board is more advanced than other health board regions. We know how many people suffer from mental handicap in the mid-west region and we know precisely the requirements. Unfortunately, the allocation made by the Minister to our health board recently is totally inadequate.

The report to which I refer is no doubt familiar to the Minister and is quite detailed. I do not intend making more than passing references to it tonight. I will, however, draw the attention of the House to a preliminary report, Report No. 9/92, put before the Mid-Western Health Board by the relevant programme manager, Mr. Martin Duffy. This was developed into the fuller and more general report subsequently.

There are 499 persons recorded as not being in receipt of either a day or residential service in the Mid-Western Health Board region. This represents 29 per cent of the base population who suffer from mental handicap. The majority are persons with a moderate mental handicap but of the total, 183 were considered as in immediate need of services and of these, 137 were in need of residential care.

The persons who require residential care comprise a number of groups. The first is persons who are currently in residential care and require an alternative placement e.g. children in adult centres or other persons considered to be in inappropriate locations. The second category are adults, and there are many of them, who are occupying children's places. There is another category of persons in day services who require residential care either because of their own circumstance or because of particular family circumstances. Finally there is a category of persons who are in receipt of no service and require residential care.

Some of these persons may be in crisis while others may have a similar need but could be wait-listed for a short period. Others may be in immediate need though there may be no crisis need. Where adults are occupying children's places, immediate placement into an adult location would free up places for children.

There are 219 persons identified as requiring a residential placement as the next service requirement. Of those, 134 are in residential care, 53 are in a day service, and 32 are not in receipt of any designated service.

At St. Vincent's, Lisnagry, 77 adults occupy children's places. In St. Anne's in Roscrea, 20 adults occupy children's places. In the Brothers of Charity at Fota in Cork 16 adults from the Mid-Western Health Board region occupy children's places.

We are in a crisis and I would stress again to the Minister that what Deputy Flanagan has said is correct: the state of the services for the mentally handicapped is such that we do not know how many people require care or what type. In one health board where research was carried out the figures surprised even the researchers and the people on the committee whose task it is to care and provide services for the mentally handicapped. The figures were much higher than expected or suspected. I suggest that the figure suggested in the report "Needs and Abilities" is out of line if the data produced by the Mid-Western Health board is representative of the position in the country as a whole, and I have no reason to believe it is not.

Many Members of this House are members of health boards and know the amount of money required to implement the main recommendations of the report to which I referred. I would be happy if this money was made available on a systematic basis over five years. In the meantime it must be recognised that there are existing problems in the service which need to be addressed as a matter of urgency, for example, adults blocking children's beds and the absence of children's community services. The experience of the service providers has identified a range of needs for adults and children which must be addressed because of their urgency. If they are not the orderly development and provision of services will grind to a halt.

The programme drawn up by the committee which examined the needs of the handicapped in the Mid-Western Health Board region is very extensive. At the end of the programme the service providers identified what is required immediately in terms of emergency action to provide the service required in 1993. The total cost of these measures, in terms of current and capital expenditure, is £6.295 million. That is the emergency provision required for one health board region. The figures are not exaggerated. Some weeks ago the Minister notified the health boards of their allocation from the extra amount provided in the budget. My health boards gets some allocation on the capital side and the allocation on the current side is £458,000. According to the accompanying letter from a civil servant in the Minister's Department the allocation of £458,000 is the full year provision. The health board will be in a position to use these resources from 1 July. This reduces the sum of £458,000 to half. The Minister is shaking his head at me. If he thinks what I am saying is not correct he should contact the chief executive officer of my health board who told me at the last health board meeting that £230,000 on the current side was all that was available to him. This is against an emergency requirement in excess of £6 million.

A disastrous situation is emerging. In short the provision in the budget is only sufficient to cover the emergency needs of one health board. The population of the Mid-Western Health Board region is less than 10 per cent of the population of the country. Under normal circumstances we would expect approximately 10 per cent of any allocation for health purposes. When the requirements of one health board, which caters for 10 per cent of the population and which has carried out research into the problem of mental handicap to establish the data base, the incidence and the main needs, comes up with a figure in excess of £6.5 million, is it any wonder that members of the Opposition make the case for more resources for the mentally handicapped? Is it any wonder that this motion is before the House and that the parents, friends, carers and service providers who know this problem so intimately are fully behind us in this proposal?

I ask the Minister to reconsider the funding for this area. What the Labour Party did was shabby. We are all in politics and we know that promises can be broken.

Mr. Howlin

We all know the game.

Mr. Noonan

(Limerick East): However, to make a promise to the most vulnerable in our society is, to quote the Minister, outside the rules of the game. We might know the game but that is not part of it.

Mr. Flanagan

That is correct.

Mr. Noonan

(Limerick East): It is not part of the game to use the mentally handicapped to attract votes to the Labour Party or any other party.

Mr. Ferris

What is the Deputy doing now?

Mr. Noonan

(Limerick East): If the Minister has any respectable approach to politics he will go back to his colleagues in Government and get the necessary resources to put a proper programme in place to provide care for the mentally handicapped.

Mr. Durkan

It is reasonable to expect a general improvement in the services provided by the Government as no area is more deserving in this respect than the special hospital services for the mentally handicapped. It is laudable that care of the mentally handicapped should have been made an issue at the last general election. It was desirable and reasonable to expect that this would become an issue of that time. Those of us who are members of health boards have seen at first hand the deplorable conditions provided for the care of the mentally handicapped and the treatment meted out to that vulnerable group by virtue of the fact that sufficient funds, staff and buildings were not available. When the buildings became obsolete we did not have the wherewithall to provide alternative community care facilities.

It is reasonable for any party going before the electorate to seek to improve its electoral chances to the best of its ability. It is equally reasonable that promises should be made to certain groups in society. However, it is equally important that these promises are kept. In case there is any doubt in the minds of those Deputies on the Government benches about their responsibilities in this area, I wish to remind them that they will have to look into the eyes of the parents of the mentally handicapped and ask themselves whether they were honest at the time and whether they intend to deliver on their promises. The Government has spent much of its first few months in office cutting £25 million here and £10 million there. All these cuts pale into insignificance in terms of the needs of the handicapped.

Mr. Durkan

I will not go over the ground already covered by previous speakers. As a member of the Eastern Health Board it has been my duty to deal with the issue in St. Ita's, Portrane. If the Minister is not aware of this issue I expect he will shortly be made aware of it.

Mr. Howlin

The Minister is aware of it.

Mr. Durkan

That issue has been with us for far too long and it cannot be dealt with by simply hoping and wishing it will go away. The only way it can be dealt with is if the necessary staff, care and attention, and proper buildings are provided and the health board allowed to carry out its statutory duties.

Mr. Browne

(Carlow-Kilkenny): I very much regret that I am not in a position in the time available to pay sufficient tribute to the people who care for people with a mental handicap. It has been my privilege for a number of years to have been chairman of the Delta Centre in Carlow, a training centre for people with a mental handicap. My involvement in this centre has given me an insight to the ill-treatment, so to speak, of people suffering from a mental handicap by official sources.

I wish to pay tribute to the parents and friends of people with a mental handicap. I am sure that the position in Carlow is the same throughout the country. These parents have been handicapped in their own way by having a child with a mental handicap. They must raise the funds for these schools and pay the capitation. If an extension is needed, they must provide the money as distinct from parish schools where the money is provided by the parish. St. Lazarian's special school in Carlow had to rise £7,790 in 1990, £8,656 in 1991 and £13,608 in 1992. These people never get a break. There is often a reference to our obligation to cherish all the children of the nation equally. This sounds very well but it does very little to help those who need assistance. Schools are not getting the backing they need. There is a lack of care workers and very often care is necessary on a one to one basis for people with mental and physical handicap. The number of care workers is insufficient. A full-time trained nurse is required in schools. I ask the Minister to deal realistically with this problem. As a former teacher he must know the needs in this area.

Minister for Health (Mr. Howlin)

I move amendment No. 1:

To delete all words after "That" and substitute the following:

"Dáil Éireann notes the Government's commitment in the Programme for Partnership Government to the elimination of inequality for all groups in society that have suffered from disability and, in particular, approves the following measures in relation to persons with a mental handicap:

the appointment of a Minister for Equality and Law Reform to co-ordinate all Government initiatives for persons with disability and to promote their rights; the provision of an additional £8.5 million in 1993 to speed up the implementation of Needs and Abilities;

the consultation and involvement of parents and families of persons with a mental handicap in the planning of services; and

the encouragement of the integration of persons with a mental handicap to the maximum extent possible in educational, training and employment opportunities in society".

I seek the permission of the House to share my time with Deputy Ferris.

An Ceann Comhairle

Is that satisfactory? Agreed.

Mr. Howlin

I welcome the opportunity provided by this motion as it enables me to put on record my commitment and that of the Government to provide in accordance with the Programme for a Partnership Government the highest possible level of service for persons with a mental handicap and to create an environment in which all persons with a disability of whatever kind can freely exercise their full rights as citizens in our society.

We intend to make the equality of people with disabilities a reality by ensuring that the services they need are theirs as of right. We will ensure that people with a disability and their families have as much choice as possible in the use of services and that they are consulted about policy and service issues. We will encourage the integration of services with those for the community as a whole so that persons with a disability will regard themselves as an integral part of that community.

Services for people with a mental handicap have changed radically for the better over the past 20 years. High standards of service provision have been achieved notwithstanding the fact that our country's economic resources are lower than those of most of our European partners with whom we tend to compare our services. This is in itself an achievement and is due to the sustained efforts of the voluntary and statutory sectors. We have established an international reputation in the field of mental handicap services.

The key contribution of voluntary agencies was simple but radical. These sisters, brothers and committed lay people believed in the dignity of the person with mental handicap. They believed that these children could develop their personalities and skills far beyond the bounds of what many thought possible. The role these agencies have played in developing services for people with mental handicap 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.

A substantial amount of money is being spent on a range of services to people with mental handicap. In 1993 approximately £209 million will be spent on these services. This expenditure includes the funding provided by my Department to the direct funded agencies, services provided for people with mental handicap in psychiatric hospitals, in health board centres and by voluntary agencies funded through section 65 of the Health Act, 1953, and other grants by the health boards. It also includes expenditure on disabled persons maintenance allowances and domiciliary care allowances.

Before outlining the challenges which face the Government and service providers in meeting the changing needs of people with mental handicap and their families, I would like to take a look at what is available at present. By any standards, the services which have been developed in this country for people with mental handicap are of a high standard. However, I recognise that we have much to do if we are to meet fully the needs of all persons with a mental handicap who are on a waiting list.

As a public representative I have been conscious for many years of the problems faced by people with mental handicap and their families in endeavouring to obtain services of the different stages of their development. The fundamental problem is that the number of people with a mental handicap has been growing faster than the capacity of services to meet their needs. The growth in the numbers is a result of increased longevity of people with mental handicap rather than a rise in the incidence of mental handicap. We must ensure that this increase in life expectancy is matched by a corresponding increase in the quality of life of persons with a handicap and their carers. Now that we have added years to life we must now make sure that we add life to the years.

I would like to put on record my appreciation of the enthusiastic and wholehearted response to the needs of people with a mental handicap which has been given down the years by the staff working in the agencies. Their dedication, at times over and above the call of duty, has enriched the lives of many, breaking down barriers which in the past prevented people with mental handicap from achieving their full potential.

It is understandable that most families who have a son or daughter with mental handicap would wish to keep them at home as long as possible. In order to do so, however, they need access to appropriate support services. In particular they need access to respite care on a planned basis and the assistance from the home support services either on an occasional or, in some case, an ongoing basis to alleviate the heavy physical and mental burden which caring for a family member with mental handicap can place on them.

As the population with mental handicap still being cared for at home grows progressively older, so too do their carers. It is not uncommon to find parents in their seventies caring for a son or daughter in his or her forties. I understand those parents' concern about the future welfare of their son or daughter.

They made great sacrifices to keep their children at home. They need the reassurance that the person will continue to be cared for when they can no longer care. I have met dozens of such carers up and down the country in the past four months.

The kernel of the challenge facing the Government, service providers and the families of those with mental handicap is to develop services in a way which matches the needs and promotes the abilities and integration of people with mental handicap. The Government has outlined its commitment to the development of services for people with a mental handicap in the Programme for a Partnership Government which I helped negotiate. It is my task as Minister for Health to implement this commitment and to translate it into reality.

The report of the review group on mental handicap services — Needs and Abilities — outlines the principles which should underlie the provision of services. It endorses the direction in which our services have developed. Throughout the report, the review group emphasises the importance of supporting the family and providing services locally.

In the Programme for a Partnership Government, the Government has reaffirmed its commitment to developing comprehensive community-based services for people with mental handicap. The Government has also committed itself to provide sufficient additional funding to accelerate the implementation of the recommendations contained in the review group's report.

The Government is committed to improving and strengthening the health services to people with a disability, in particular those with mental handicap. In the budget this year the Government made available an additional £6.5 million to develop services for people with mental handicap. In addition I have made available a sum of £2 million from within my own Department to strengthen the funding base of some direct-funded mental handicap agencies and to meet some essential service needs. That was done at great expense to other agencies because my Department and the Government recognise the crucial importance of mental handicap services. A sum of £2 million was taken from agencies across the board to augment the £6.5 million additional allocation provided in the budget by the Minister for Finance.

Four million pounds has been allocated to the health board regions and this money will be used to provide a very broad range of additional services along the following lines: Ninety residential places for the provision of on-going care and for emergency and respite care; 200 day care places for a wide variety of community-based services; the improvement of the home support programme which was initiated last year, the continuation of the transfer of persons with a mental handicap from psychiatric hospitals to more appropriate hostel accommodation in the community; the creation of further early intervention and child education and development services; the improvement of services in St. Ita's Hospital in Portrane, specifically recognised and funded; and the commissioning of new bungalow accommodation at the Daughters of Charity on the Navan Road in Dublin. They are an indication of the things that can be provided with the additional resources allocation provided this year.

The precise services to be provided in each region will be agreed by the local mental handicap co-ordinating committees within the guidelines issued by my Department and will be approved by me. It is important that the spending of the money should be agreed by those who are providing and monitoring the services at local level. I did not allocate the money on a regional basis. I allocated it to where the greatest need was, and some areas did better than others because they had greater numbers of people seeking services. I make no apology for doing that. These allocations were determined on the basis of the waiting lists for services and on the current level of service provision in each area.

Provision has also been made for the capital investment necessary to support the initiatives which will be put in place this year. The allocation of the £2.5 million capital funding made available in the budget will be directly related to the service developments agreed by the regional mental handicap co-ordinating committees and approved by the Department of Health. This is by far, the largest single allocation ever made for services to persons with a mental handicap and is a mark of the determination of the Government to give a very high priority to the development of these services.

I have outlined the challenges which face us in meeting the growing demands for services to persons with a mental handicap. I have outlined our response to these challenges and mentioned the fact that this year we are spending about £209 million on such services. This is a considerable level of expenditure and while I accept that more needs to be provided — I battled for more and will continue to battle for more — I am anxious that every person with a mental handicap should get some measure of service from this level of expenditure. That is a very reasonable aspiration.

When I announced the 1993 initiative I set down three key objectives in relation to persons who are on a waiting list for a service or a change of service. These are: every person on a waiting list for residential care would get at least one planned respite break a year; every person on a waiting list would get some measure of support from the home scheme and every co-ordinating committee should ensure that arrangements are in place so that all genuine emergencies can be responded to. All co-ordinating committees have been asked to pay particular attention to these objectives. I hope that they will give reassurance to families who have a member on a waiting list.

I recognise how important it is that we do everything possible to prevent the occurrence of handicap. Accordingly, I find the present situation in relation to the provision of genetic counselling unsatisfactory. Genetic counselling is available to a limited extent within our paediatric hospitals and units and in obstetric hospitals and units throughout the country. In addition, genetic screening and testing facilities are available in the major university hospitals. However, integrated medical genetic services do not exist in this country at the moment, and this is the reason many people travel to Belfast or overseas to obtain advice and counselling.

A sum of £250,000 was allocated towards the establishment of an integrated genetic conselling service in 1992. I have provided an additional £410,000 in the 1993 revenue allocation to Our Lady's Hospital in Crumlin for the development of a national medical genetics counselling service. That is something that will be welcomed by parents across the country. The service will provide non-directive counselling, that is, decisions will be made by the patient in consultation with the consellor having regard to the facts and treatment options available. This new service will be backed up by a medical genetic laboratory which will be able to test for all medical genetic conditions. As soon as the detailed arrangements for the national centre have been finalised, I will be considering how best the service might be organised on a regional basis.

One of the most significant developments ever to take place regarding persons who are disadvantaged was the appointment of a Minister by this Government whose special task is to look after the interests of the disadvantaged and to ensure that the objective of eliminating inequality for all groups becomes a reality. In the negotiations for a Partnership Government, it became very clear that while individual Ministers and Departments had responsibility for various aspects of services to persons with a disability, there was a lack of an effective co-ordinating role and of a voice whose primary function was to promote the interests of the disadvantaged. The appointment of my colleague, Deputy Mervyn Taylor, as Minister for Equality and Law Reform is a concrete expression of this Government's intention to ensure that the promotion of the rights of persons with a disability become a reality and is not seen as some catch-phrase, which it has been for too long.

I listened with some amusement to what Deputies opposite said tonight about my performance.

Mr. Flanagan

It is reciprocal.

Mr. Howlin

I listened to Deputy Browne on a few occasions do his pantomime performances.

Mr. Browne

(Carlow-Kilkenny): Deal with reality.

Mr. Howlin

The Deputies opposite demanded additional resources for mental handicap. Earlier this afternoon they demanded additional resources for child care. A fortnight ago their finance spokesman demanded £220 million in cuts in public expenditure. I know what the reality would be if they ever got their hands on the levers of power.

Mr. Browne

(Carlow-Kilkenny): The Minister was not slow to look for money when he was on this side of the House.

Mr. Howlin

It is clear from what we have achieved in just four months that our bona fides in this regard are above reproach. I agree with Deputies that more should have been done for persons with a mental handicap over the years — and in particular in the eighties when the numbers increased through increased longevity as a result of advances in medical science. I do not need Deputy Flanagan or anybody else to remind me of this since I have made this very point on numerous occasions over the past few years. Unfortunately, I was not Minister for Health at that time but since I became Minister, I am proud to say that I have secured the largest ever increase in funding for the services to persons with a mental handicap. This is a fact of which I am immensely proud and I know from contacts all over the country who are interested in persons with a mental handicap that this has been much appreciated.

I would be the first to accept that much more needs to be done and it is my intention to ensure that the services are expanded and strengthened in line with the recommendations of "Needs and Abilities". I will not be found wanting in relation to demands in this area.

One point which deserves an answer is the fact that a promise of an additional £25 million for persons with a mental handicap was made in our election manifesto. That is true. I drew up that election manifesto.

Mr. Flanagan

Deputy Ferris denied it.

Mr. Howlin

I argued for it and put it to the people.

Mr. Flanagan

The Minister's party got votes for it.

Mr. Howlin

Had we got a majority Labour Government we could have delivered on that.

Mr. Flanagan

The Minister is safe making those promises.

Mr. Howlin

This reflects the urgency with which I and the Labour Party view the need to extend the services. After the election we made a significant increase, as Deputies opposite recognise.

Mr. Flanagan

Promises do not matter.

Mr. Howlin

Fine Gael managed to lose more seats in Opposition than the Government managed to lose. That is quite extraordinary.

Mr. Browne

(Carlow-Kilkenny): All talk and no action.

Mr. Howlin

Unfortunately, after the election, because we did not have an overall majority, it was necessary to enter into negotiations with other political parties. I am the only Deputy who has had the unique experience of negotiating with every political party in this House subsequent to the general election.

Mr. Flanagan

Thirty pieces of silver.

Mr. Howlin

I negotiated with Fine Gael, the Progressive Democrats, Democratic Left, Fianna Fáil and even the Green Party——

Mr. Browne

(Carlow-Kilkenny): The Minister should deal with the mentally handicapped.

Mr. Howlin

——and I can say, with my hand on my heart, having extracted money in the negotiations for services for persons with a mental handicap and for the waiting list initiative——

Mr. Browne

(Carlow-Kilkenny): The Minister is £1 million short.

Mr. Howlin

——that we would have got precious little if we had gone into Government with the party which put its name to this motion tonight.

Mr. Browne

(Carlow-Kilkenny): They are just words.

Mr. Flanagan

There is no evidence to prove that.

An Leas-Ceann Comhairle

The Minister to continue without interruption.

Mr. Howlin

I am satisfied that the various commitments in relation to persons with a mental handicap and a disability, as set out in the programme, are genuine. I am proud of the start we made.

Mr. S. Ryan

It is only a start.

Mr. Howlin

I have met parents throughout the country and I intend to continue to liaise closely with them. They accept my bona fides and over the life of the programme of this Government we will make an impact as we have shown during the first four months of this Government of action, not rhetoric. I accept that more needs to be done and Deputy Flanagan and the House can rest assured that I, as Minister for Health, will ensure that more is done.

Mr. Ferris

I thank the Minister for sharing his time and giving me the opportunity to speak on this subject. Like the Deputies opposite, I deal with handicapped people daily. This matter affects many families and it is an area to which I, the Minister and the Labour Party have paid much attention over the years.

When in Opposition the Minister and I were my party's spokespersons on health and were members of an allparty ad hoc committee which included parents of children with a handicap. I would remind Deputy Noonan that we reminded the health boards that they needed to submit documentation so that those of us in Parliament could highlight, in addition to the policy document “Needs and Abilities”, the needs identified by the professionals in this area. In Government, the Labour Party is committed to eliminating inequality for all groups in society. It is our ambition to root out all forms of discrimination and in so doing we will undoubtedly improve the lives of many people affected directly and indirectly.

In Opposition I published a Private Members' Bill which would have given people with a mental handicap statutory rights. I am glad that its provisions have been incorporated in the Programme for Government and will be introduced by my colleague, the Minister for Equality and Law Reform, Deputy Taylor. The Minister referred to this legislation tonight. I am sure it will be a significant milestone in the fight against inequality.

There is a need for substantial investment in services for people with a mental handicap. Prior to next year's budget, my Labour Party colleagues and I will be pressing the Minister for Health to ensure that a significant budgetary allocation is provided for services for people with a mental handicap.

Mr. Flanagan

The Deputy will have an opportunity to do that tomorrow night; he does not have to wait for a year.

Mr. Ferris

Today the Fine Gael spokesman on Finance at the special committee dealing with the Finance Bill claimed that the Minister was spending too much money on the health services; they cannot have it both ways.

Mr. S. Ryan

That is a disgrace.

Mr. Ferris

They should not speak with a forked tongue and play politics on this issue. The Government has made inroads in easing the plight of those with a mental handicap. We have called for extra funding and this request has not fallen on deaf ears. In Government the Minister has been given a commitment that extra funding will be made available.

Mr. Flanagan

The Deputy should support the motion if he wants extra funding.

Mr. Ferris

As Deputy Flanagan is aware — he was his party's spokesperson on health for a while — an additional £8.5 million was provided in the budget to improve and strengthen the services for those with a disability, in particular those with a mental handicap. In addition, the Minister for Health has made an additional sum of £2 million available from the Estimate for his Department to make sure that funding is provided for agencies providing services for people with a handicap. We are all indebted to these agencies for their work. Deputy Flanagan is correct when he says that it is a long time since we debated this issue. On the last occasion people collected money outside in the rain. They also collected money during the period of the Tallaght strategy.

Mr. Browne

(Carlow-Kilkenny): They are still doing it.

Mr. Ferris

In Government we will make the changes we promised. However we will not do what the party opposite has asked us to do. Indeed, it is in no position to make any commitments or promises, it runs with the hare and hunts with the hounds.

The people concerned should be praised for the work they have undertaken throughout the country. They include the families and friends of those with a mental handicap. Deputy Browne mentioned the people involved in County Carlow; I would like to mention the Tipperary Association for the Mentally Handicapped who do magnificent work.

Mr. Flanagan

The Deputy's party kicked then in the teeth during the past six months.

Mr. Ferris

It has provided schools and workshops with the assistance of the Minister and the support of the public.

Mr. Flanagan

No thanks to the Government.

An Leas-Cheann Comhairle

The Deputy in possession to continue without interruption.

Mr. Ferris

We should not forget either that the voluntary agencies have done magnificent work during the years——

Mr. Browne

(Carlow-Kilkenny): Why should they have to collect money?

Mr. Ferris

——and if it had not been for them the services available would not be as advanced.

Mr. Flanagan

That is true; it is still the case.

Mr. Ferris

In his speech tonight the Minister for Health recognised the role of parents and families. He believes, correctly, that they have a central role in planning these services. One cannot throw money at something without first putting structures in place. The people who deliver a service on a voluntary basis decide in consultation with the Minister, how some of the additional money should be spent. It is essential to avail of their knowledge and expertise if we are to provide proper services for the families of persons with a mental handicap. It is possible for the Government and these families to work together to ensure that people with a disability can participate fully in society. I have the utmost confidence in the Minister that he will succeed in integrating the services so that those with a disability will consider themselves an integral part of the community.

Opportunities are available for persons with a mental handicap. I am pleased to be associated with industrialists who want to provide workshops for the handicapped. The Minister is aware of these proposals. Why should they have the same opportunities as everybody else and treated in the same way? Fine Gael should not use emotive language for political reasons in this House and make complaints at the special committee that too much money is being spent on the health services.

Mr. Flanagan

That is not true.

Mr. Ferris

We want to be specific and tell the people what they may expect from us. We have already delivered on some of the promises we made in this area and heckling by Deputies Flanagan and Browne will not stop me telling the truth. The public will believe the truth because the Deputies opposite can only speak with forked tongues.

Mr. Flanagan

We will see tomorrow night who speaks with a forked tongue.

(Interruptions.)

Mr. Ferris

What did the Deputy promise?

Mr. Flanagan

This amounts to cynical abuse of the vulnerable.

Ms O'Donnell

I am grateful that the Minister was given an opportunity tonight to outline his excellent plans to improve the facilities available for the mentally handicapped. I know there is something of a conflict of responsibility between the Minister for Health and Equality and Law Reform at present in relation to the care of and provision of services for mentally handicapped people. I know that discussions are continuing between both Government Departments with regard to their respective responsibilities.

It was useful that the Minister gave us a commitment that his Department is assuming a leadership role in the provision of the services promised. I welcomed the £8.5 million increase in funds provided in this year's budget for the development of services for people with a mental handicap, which the Minister said brings the total allocation of resources to £209 million. We really must give credit where it is due. This is the first time it has been given. We could continue to moan forever that the amount should be more but a start has been made and there has been a change in balance effected. Choices have been made. I commend the Minister on having convinced his Cabinet colleagues that such choices had to be made in favour of people with a mental handicap.

However, all the funding in the world will have no lasting effect without a comprehensive support programme developed in this field. In this respect I want to refer specifically to the role of carers who care for people with a mental handicap at home. This could be described as a woman's issue since over the years the task of caring for children and adults with a mental handicap was borne predominantly by mothers working in the home. For too many years that work was taken for granted by society and by successive Governments. An army of unpaid workers within the voluntary sectors has been bearing that burden. It is about time that voluntary support was buffered by greater resources, as it has been this year.

It is my belief that most mentally handicapped people should not be institutionalised. There is growing acceptance that they should be able to take their place, in so far as possible, within the community. In order that that may happen we must provide increased support for carers, those people who work in their homes, endeavouring to balance their obligations to their other children. It is in the interests of everybody in society that help be given to parents looking after mentally handicapped children in the home. If the other ablebodied children in the home are not to be neglected, there is an obligation on the State to ensure that they are given support.

In providing mentally handicapped people with the best quality of life we must remember that the carer's quality of life must not be destroyed. That has been the case over the years, when marriages have broken down, women having become slaves to their handicapped children, which is no longer acceptable. There has been support forthcoming from voluntary organisations who do a great job, but they cannot provide adequate respite care for the many families who need a break occasionally. They are in need of lots of breaks. We should not work to the minimum, but rather towards ensuring that these people have many breaks throughout the year because we must always remember that one week looking after a mentally handicapped person is the equivalent of six months in an ordinary person's working life, the work being so intense. It is somewhat like the intensive demands looking after an infant makes on an individual.

There always has been the commitment stipulated in our Constitution to cherish all children equally but unfortunately that has not been the case to date. It would be my hope that we are moving towards remedying that position.

I welcome the Minister's commitment to the provision of 200 day care places and the improvement of the home support programme initiated last year. It is also important that people who are inappropriately housed in psychiatric homes nationwide should be transferred to smaller, more intimate hostel accommodation.

With medical developments mentally handicapped people are living longer. This means that many elderly parents live in fear of what may happen their adult mentally retarded children once they have died. This is a burden that should be removed so that all those people who have given their lives to looking after their mentally handicapped children can die in peace knowing that the State will take over their responsibilities. With the increase in the occurrence of Alzheimer's disease, many more elderly people will be needing the care of professionals trained in the field of mental illness.

The Minister this evening referred to the forthcoming, long overdue initiation of the genetic counselling service to be shared by Our Lady's Hospital for Sick Children and Temple Street Hospital which could have a major impact on the incidence of children born with serious congenital abnormalities. It is estimated that almost half of all families at risk could be helped by such genetic counselling. I understand that three-quarters of all mental handicap has a genetic component. It will clearly be seen that this is a very important development, one that had been placed on the back burner because of moral objections and the huge amount of public debate that surrounded anything to do with reproductive technology. This is a most welcome development. We should not be afraid of saying so lest we be considered to be insensitive to the parents of children with a mental handicap. I am sure all such parents would have been delighted to have availed of the service had they been able to avoid bringing people with a mental handicap into the world. A committed policy for the introduction of an integrated national service of genetic counselling is the way forward.

We must also have a committed policy to overcoming inequalities, discrimination, all of those tasks with which the Minister for Equality and Law Reform is charged. I inderstand that the cost of the State of a mentally handicapped person from birth to death is £750,000. We must ensure that the increased resources the Minister has secured will be spent in the most caring, productive and efficient manner ensuring maximum benefit for the mentally handicapped.

I turn now to the education of mentally handicapped people. There has been a debate always on whether it is desirable to have mentally handicapped people integrated into the mainstream of our education system. At the earliest possible age an attempt should be made to offer choice to individual parents. Many parents know exactly what their child is capable of. Fundamental to the rights of such parents is the ability to make choices for their mentally ill child or children. Places and facilities can be made available in our national and secondary schools for people with a mental handicap in so far as such is practicable within individual schools. In some cases it might not prove to be appropriate but if we provide good special schooling and care we will have travelled a long way towards meeting their rights as individuals. Choice is the key and it is parents who must make those choices. They should be afforded every facility in helping their child or children.

Part of the Labour Party policy before the last general election was to appoint a Minister for Disability, about which I had reservations. Many people consider it wrong to segregate responsibility for people with a disability into a separate Ministery, contending that a more integerated approach is appropriate, all the State's services being geared to deal with the needs of people with special disabilities. I am willing to wait and see how it transpires. In this respect I am sure the Minister for Equality and Law Reform will provide leadership. I believe there is good co-operation between his Department and that of the Minister for Health.

There were some worries expressed about disclosures in regard to Saint Ita's. I am sure that was not a unique case, that nationwide our services for people with a mental handicap have developed in a type of ad hoc manner. I understand that too much restraint was used in dealing with some cases. That points to the need for a greater balance between the psychiatric and psychological services nationwide. I know that throughout our health services psychological services have tended to take a back seat, that we have been under-resourced in introducing psychological health services throughout our system. Training and work opportunities for people with a mental handicap is most important. In this respect I note the Minister's commitment to some further enhancement of the vocational training opportunities for people in that field.

This has been the largest single allocation to date and is to be welcomed. We can only hope that it will bring the best out of the Department's expertise. The Minister has given us a commitment, this motion having provided him with an opportunity to outline in detail what that commitment means.

The Minister should give further consideration to people with a mental handicap which may have arisen out of the whooping cough vaccine, as was the decision in the Kenneth Best case, where negligence was proved. The Department of Health identified other cases in the late 1980s, where it has been accepted that the whooping cough vaccine may have caused brain damage to a small number of individuals. I hope the Minister will consider setting up a fund for families whose children have been brain damaged by that vaccine. I would like to hear the Minister's response to this point. Perhaps the issue may be raised at another time but it is relevant to this debate. A small number of families are affected, they are not eligible for legal aid to take a case individually and cannot afford to do so. They do not have sufficient support from the State in caring for their children.

A Leas-Cheann Comhairle, with your permission I wish to share my time with my colleague, Deputy Quill.

An Leas-Cheann Comhairle

Is that agreed? Agreed.

Mr. E. Kenny

Is the Progressive Democrats Party sharing time with the Fine Gael Party?

Miss Quill

Yes. How much time remains for the debate?

An Leas-Cheann Comhairle

There are 19 minutes remaining.

Mr. Howlin

Ten minutes tonight and ten minutes tomorrow night.

Miss Quill

Like my colleague, Deputy O'Donnell I compliment the Minister. I am more encouraged now about the future of the mentally handicapped than I was three years ago. Long before I went into politics I spent a great deal of time doing voluntary work with a group for the handicapped in Cork and I was acutely aware of the lack of services, especially those which were tailor made to fit individual situations. Now we have the basis of a much better system and the money with which to fuel it. We have developed an awareness and learned lessons that will enable us to ensure the system is more responsive to individual needs, more flexible in responding to individual families and that there is a more organic interaction between the voluntary and State services and the families with a mentally handicapped member. That is a major step in the right direction. It would be a great pity to fail to acknowledge this and it would add to the worries of parents about their mentally handicapped children. Apart from anything else, we need to reassure families that more is now being done — and planned — for those with a mental handicap. That in itself helps to ease the very heavy burden which families with a mentally handicapped person have to bear. There can be few more devastating blows for a young mother than the growing realisation that the child she has borne with love and anticipation is mentally handicapped. That must be one of the most difficult and bitter blows for young mothers to come to grips with, but they have come to grips with this situation with an extraordinary heroism that has never been fully acknowledged. Imagine the psychological difficulty of having spent months on months looking forward to a healthy, happy, laughing child and then to find, through no fault of your own or anyone else, that your child is different. The psychological switch that it takes to come to terms with this in the first instance, as so many mothers have done in a spirit of courage and generosity and then having to cope with it on an ongoing basis over many years, is a burden on women, fathers and other family members. Unquestionably, women have borne the brunt and I am very glad there is a growing realisation of that fact in the Minister's speech. Not alone must we be setting down a system that responds effectively to the needs of the handicapped, we must put in place a system that responds equally effectively to the needs of the carer. When we care for the carer we are also caring for the handicapped person.

I would like to see very careful monitoring to ensure that we respond adequately and sentitively to the needs of such families. One such area is respite care. Mothers who have kept the young or growing child at home have done so with great generosity involving hard work, need a rest at times. Indeed, they need more than one respite per year. There needs to be greater flexibility so that when there is an unexpected happening in the family, for example, an outbreak of illness or when the mother becomes ill, the services should be able to respond and come up with some kind of support mechanism, whether in bringing in outside help or taking the handicapped person from the home for respite care. If that was the case, it would mean a great improvement for mothers and families of handicapped persons.

In parts of the country we have a very good day care service for mildly mentally handicapped persons which very often has been put in place by voluntary groups, to whom great credit is due. We must build on that. Indeed, we have much more information on psychology and psychiatry at our fingertips than we had even five years ago which enables us to provide services in a better and more advanced way which respond to the potential of those with a mild mental handicap. Much more can be done in the years ahead in terms of a workshop-day-care service, with a blend of learning. I do not use the word "education" because sometimes people have had a bad experience of education, perhaps because people like me spent too long in classrooms. I like the word "learning" because few are so handicapped that they cannot participate in a progressive degree of learning. There is room for great improvement in the area of learning and training.

Indeed, I am certain there is scope for improvement in relation to services for the profoundly mentally handicapped. Essentially I am seeking greater flexibility in the delivery of support services. No matter what part of the country one lives in, there should be access to the best available day-care services. It often happens that there is good provision in cities whereas in rural areas there is not the same degree of availability. A mentally handicapped child in a rural area has the same rights and the same right of access to services as a child in an urban area. We must ensure that there is an equality of access for the handicapped, children and adults, whether they live in rural or urban areas. That is very important.

The needs of handicapped persons change and develop as the person grows older. Indeed, at the same time, the needs of the carer also change. As the carer grows older there is loss of energy and we have to tailor our services to the changing circumstances, what is adequate for a mentally handicapped person today may not necessarily be the right recipe in five years' time.

We have here the basis of a better and more responsible service and I hope we can build on it. Perhaps the Minister would come into the House on an annual basis and give a report on how the services are working, what changes have been brought about as a result of the increased allocation, what new research has been carried out and how it has been harnessed to practical measures on the ground. I would ask the Minister to do that on an annual basis. There is great scope for giving greater reassurance, through that mechanism, to parents who for too long have been neglected.

Debate adjourned.