I wish to inquire where the Minister for Health is tonight. This matter was put down to the Minister for Health. I was fortunate enough to be given permission by the Ceann Comhairle to raise this matter on the Adjournment last night, but within minutes of the debate I was requested to withdraw the matter on the basis that there had been some mix-up within the Department of Health and I was given an assurance that the Minister would be present in the House tonight to reply to the matter.
Adjournment Debate. - Care of Autistic Children.
I will deal with that matter in my reply.
I am not casting any reflection on the Minister of State at the Department of Justice. This matter is the responsibility of the Minister for Health and he should be in the House to reply to it.
I thank the Ceann Comhairle for allowing me to raise this matter on the Adjournment. Of all the various types of mental handicap, autism is probably one of the most unfortunate and difficult handicaps. Thankfully, it is not a common condition. Approximately four or five per ten thousand of the population suffer from autism and three to four times more boys suffer from the condition than girls. Autism is an extremely complex syndrome where all functions are impaired. The autistic person is generally healthy and attractive, but with little or no speech, withdrawn, apathetic and unresponsive. An autistic person generally shows a very strong resistance to change, a disinterest in people and surroundings and a great interest in inanimate objects.
Many mentally handicapped people are happy in themselves, but unfortunately this is not the case with autistic people. These people experience considerable sleeping difficulties, are interested in little or no play, and have repetitive movements such as rocking, head banging and spinning. They are extremely hyperactive and subject to very great fears. These fears may be irrational, but they are very real to the sufferers. They have very poor, if any, eye contact, are extremely unpredictable and their behaviour is destructive. They are afraid of emotion and are very prone to hitting out at themselves and others if not managed properly. They are a danger to themselves and others and create severe pressure for all around them. These people feel a tremendous sense of isolation. That in itself is a formidable chronicle of the behaviour of the classic autistic. Autistics need a very specific, structured lifestyle where boundaries are set, where every little thing is predictable and happens in sequence and, therefore, their world is ordered and makes sense to them. Unless they get this type of specific programme and routine the consequences are catastrophic for the parents who are prisoners in their own home, for the other children in the family whose physical well-being is definitely in danger and for the autistic person whose behavioural problems will be unleashed in full unless they are properly catered for.
Caleb Pratt will be 18 on 26 June next. He no longer attends school at St. Brid's, Castlebar, because the school could not cope with him; he wrecked the place. I exonerate the school from any blame, indeed the opposite is the case, it did a marvellous job with limited resources. At present Caleb is in crisis at St. Eithne's Home in Foxford.
Even if Caleb could return to school, officially he becomes a school leaver on 26 June when he will be 18. Literally, there is nothing for Caleb beyond this respite or crisis management after 14 May. This is because the Western Care Association, which offers a range of excellent services to 400 people with mental handicap in County Mayo, has a budget shortfall of £412,000 in 1993. The immediate result, according to the Western Care Association, is that there will be a serious cutback giving rise to severe hardship for clients and parents and the loss of approximately 30 jobs. This vital respite-crisis arrangement that Caleb now enjoys will go on or soon after 14 May. This arrangement is only possible through the Western Care Association's finite funding arrangement. It has had to borrow and get further into debt to provide this crisis relief service.
In blunt terms, we are talking about money. The Western Care Association receives the bulk of its money from the Western Health Board which is funded by the Department of Health. The Western Health Board is working with a £2.5 million shortfall in what it requires to hold even acute hospital services at 1992 levels. In such situations the vulnerable, the weak and minorities are the first to be caught in the crush.
If Caleb is returned to his family the pressure, trauma and domestic situation will be intolerable. These parents and the parents of other autistics in County Mayo have a fundamental, moral, social and constitutional right to a proper level of service in accordance with the needs of their children. If the proven and successful care and service is withdrawn from Caleb and from the other autistics in a similar situation then the State will be guilty of gross negligence in relation to its obligations to these children, teenagers and adults.
Caleb is classically autistic: he has a high IQ, no speech and excellent comprehension. He has catastrophic behavioural problems and is given to regular bouts of tantrums. He is unable to function except in the Foxford centre where the system suits him and where his needs are catered for in a very specific environment. Away from Foxford he is violent, destructive, wrecks, breaks, roars and screams continually. I know his family and that this situation, as the House will appreciate, makes them feel under siege. It is under such severe pressure that, in the words of the parents, "we can no longer continue to cope".
Will the Minister provide an adequate level of humane care for Caleb and his colleagues? I am pleading that an ongoing day or residential specialised placement in a specific location where a proper structured programme and environment will prevail, such as in Foxford, will not be provided on an ad hoc, temporary or short term basis but on a proper structured and definite footing in the appropriate proven environment. I want the anxiety lifted from the shoulders of these parents and the constitutional rights of their children guaranteed. I am asking for an adequate level of service, nothing more, nothing less, to be provided and for money to be made available, I hope by way of announcement tonight.
First, I apologise to Deputy Higgins and the House for the absence of the Minister for Health who was called away unexpectedly and who asked me to stand in for him.
As Deputy Higgins said, it is a question of money. Today, I received a deputation from the Association of Parents and Friends of Mentally Handicapped Children in the Mid-Western Health Board area. Therefore, the Deputy should not imagine for one moment that these problems are confined to his own health board area. Indeed, the statistics show that apart from one other area fewer places are needed in his health board area than in any other health board area in the country. The provision of services for people with a mental handicap or autism in County Mayo is in the first instance a matter for the Western Health Board and it is also a matter for the board to determine the level of funding required for the maintenance of those services. Services for people with autism in County Mayo are provided by the Western Care Association with financial assistance from the Western Health Board.
The child in question was until recently attending St. Brid's special school in Castlebar and was due to finish school in June. For various reasons he was unable to attend school in recent weeks and has been provided with respite care, as required, at the Western Care Association's centre in Foxford, County Mayo.
Crisis relief is regarded as an essential element of services for people with a mental handicap or autism and every effort is made to ensure that the needs of families in emergencies are met. There are facilities for day care at the Western Care Association in addition to respite care and day care facilities at Arus Attracta, Swinford, County Mayo. The facilities at Arus Attracta have been offered as an option to the family in question.
A discussion paper on the care of persons with autism has been prepared by my Department and circulated for comment to the health boards and organisations and individuals with an interest in autism, including the Western Care Association. My Department is awaiting a response to the paper which will form the basis for the preparation of a national policy on autism. A development plan for the provision of services specifically for children and adults with autism has also been prepared by the association and is being examined by the Western Health Board.
I would also like to point out that the Western Care Association is a voluntary agency and responsibilty for funding under section 65 of the Health Act, 1953, rests with the Western Health Board. I was acutely aware from an early date of the funding difficulties of Western Care and I have taken up this specific issue with the chairman and chief executive officer of the board. My understanding is that discussions are ongoing between the board and the association but I have been given an assurance by the chief executive officer of the board that no existing mental handicap service will be reduced or discontinued. I hope that there will be an early resolution of this problem.
The Dáil adjourned at 9.40 p.m. until 10.30 a.m. on Thursday, 13 May 1993.