Dáil Éireann - Volume 599 - 09 March, 2005

Adjournment Debate. - Special Educational Needs.

  Mr. P. Breen:I thank the Chair for the opportunity of raising this very important issue relating to St. Michael’s pre-school in Ennis. The case of St. Michael’s pre-school is one worth examining in its own right. What is happening there should be addressed quickly and efficiently. There is more to this. The situation at St. Michael’s offers us the chance to address a much wider issue in education, that of integration of children with special needs and the facilities they require.

[729] Let me first set out the facts. Since September St. Michael’s has not received referrals for children under seven years of age with special needs. A new model of care has been introduced whereby children aged up to six years with special needs will now be referred to mainstream pre-schools. My understanding from the Health Service Executive is that this is being done without consultation with parents. This is very serious.

There is no argument regarding the benefits of integrating children with special needs into appropriate mainstream class environments. This issue is being hotly debated in the British media this week. The key word is “appropriate”. The mainstream environment into which children with special needs are being integrated must be appropriate. In the case of St. Michael’s pre-school in Ennis, it is not obvious that this is the case, notwithstanding the issue of non-consultation.

Any new model of care for children with special needs should ensure that their special needs are being met. Children with developmental problems should not be subjected to lengthy and intense therapy sessions in a crowded and noisy environment. They should have the specialised equipment, the nursing care, facilities, such as sensory rooms, and changing facilities they require. What happens if a child aspirates on food or drinks or has a fit? Who will administer their medication?

I suspect the mainstream privately run pre-schools that it is intended the children with special needs from St. Michael’s will attend do not have the required facilities at the moment. Special needs assistants in these schools do an excellent job, but they do not have the training to deal adequately with extreme cases. This is where the new model of care and inappropriate integration breaks down.

There are 11 children at St. Michael’s with special needs. The five staff there allow them to live more independent lives. They are taught feeding, language and speech courses. They have specialist equipment, activity and sensory rooms. The Health Service Executive has issued a statement to the effect that international best practice is to integrate children with disability or with special needs into mainstream environments. The benefits of integration in appropriate environments are not challenged.

I am simply asking the Health Service Executive and the Minister to think about whether the children are getting the facilities and the education they require; to think about the children in St. Michael’s pre-school and about their parents, who think about their children’s future all the time; to think about the independent living skills they are being taught; and to think about whether we are doing the right thing for children with special needs or are merely pursuing integration without looking at the appropriateness of the facilities and the environment.

[730] Those campaigning to keep St. Michael’s open deserve credit and support. Their case provides an important lesson for the wider educational system. I ask the Minister to think again about these children and their parents. If we are to integrate children into mainstream schools, the schools should be provided with the special equipment that is needed for these special children who, unfortunately, were born with a disability.

  Mr. S. Power:On behalf of my colleague, the Tánaiste and Minister for Health and Children, Deputy Harney, I thank the Deputy for raising the matter and giving me the opportunity to outline the position concerning this issue.

The enhancement of the level of support available to people with disability and their families has been and continues to be one of the priorities of the Government. I am very pleased that both this Government and the previous Government were in a position to make a significant investment in these services in recent years. Since 1997, additional funding amounting to €643 million has been invested in health funded support services for people with intellectual, physical and sensory disabilities and those with autism. Of this funding €400 million was allocated to services for persons with intellectual disability and those with autism. The area of services for people with intellectual, physical or sensory disabilities and those with autism is one of the limited number of areas in which additional revenue funding has been provided by the Government in 2003 and 2004.

Regarding the matter raised by the Deputy, the Health Service Executive, mid-west area, is developing new early intervention services across the mid west, including County Clare. These services are based on international best practice and are designed to provide appropriate disability related therapeutic interventions to all children with developmental delay. This initiative is fully supported by partnership agencies of the HSE in Clare, namely, Enable Ireland and Brothers of Charity Services.

Children who require special supports to enable them to attend pre-school in their local areas will be provided with trained pre-school assistants, supported by a clinical multi-disciplinary team that will be involved in the development of individual development plans. The intended impact of this service is to identify special needs in children at the earliest possible age and intervene with specialist supports as early as possible in an effort to minimise the impact of disability or overcome areas of delay before they become exacerbated due to lack of appropriate intervention. The support into pre-school settings also attempts to address the issue of social inclusion for children with disability.

[731] I have been informed by the Health Service Executive that St. Michael’s pre-school is run under the auspices of the Clare Federation of the Mentally Handicapped. It is supported by a financial grant from the HSE. Any decision to close the pre-school is a matter for the federation. The HSE grant is secure for the pre-school if it wishes to remain open. All parents who have children in the pre-school have been advised by the HSE that its service will be maintained at current levels until their children start school. A Clare Federation representative is a member of the partnership group that manages the new service development, and meetings or discussions with parents of children at the pre-school have taken place. A further meeting has been arranged to again reassure parents that their service can be maintained if they choose not to opt for the new provision.

  Caoimhghín Ó Caoláin:I thank the Ceann Comhairle for the opportunity to raise the need for the Minister for Health and Children to take urgent action to address the crisis in the provision of services for children with special needs, as highlighted by the Health Service Executive, north-eastern area, in recent days. I also address my remarks to the Minister for Education and Science, who shares responsibility in this area, and the Minister for Finance.

I raised this issue with the Taoiseach during Leaders’ Questions this morning and now on the Adjournment because tonight, as we speak, there are parents throughout this land living in fear of what will happen to their children. That is no exaggeration. A very experienced person in the special needs sector in the north-east region told me today that parents who contacted her are “absolutely terrified”. These are parents of children with autism and other special needs. To quote again this experienced worker in the field, they are “terribly frightened” by what has happened to the O’Hara family in County Meath.

The Minister is constrained under sub judice rules in what he can say on the case. I am not looking for a detailed reply. However, I emphasise that the crisis for this family has been brought about by the failure of the State to provide the range of services they so desperately need. That failure is replicated in the cases of thousands of others. This family spoke out publicly.

They stood up for their rights and described their struggle to cope with the needs of four autistic children in a family of five.

Last Friday the three eldest boys were taken away by the Health Service Executive in the company of gardaí and their parents were not told where they were being taken. They are in bed and breakfast accommodation. The two younger children are in respite care. We need to consider the message this sends out. As I said to the [732] Taoiseach, thousands of families in the State are in fear that if they speak openly about their struggle to cope they could face a similar fate and their children may be taken from them. The report of the task force on autism, published in October 2001, declared that the State was “critically unable to meet the needs of children with Autistic Spectrum Disorders in Ireland”. The case of this family is representative of many others and it shows that nothing has changed substantially since that report was published.

Three of these children must travel far from their home to access education. The education provision for the others is limited. However, all are denied what they need in terms of speech therapy and occupational therapy. The HSE offers no help in the home for the parents who must cope with the demands of a large young family, a huge task in ordinary circumstances but doubly challenging when children have special needs. I am taking this case as typical of many others. What unites these parents is a determination to do the best for their children, to achieve their rights and to allow the children to fulfil their undoubted potential.

Does the Minister of State agree that the Government is duty bound to rectify the disgraceful neglect of decades and to provide all these children and their families with the resources they need? Will he pledge here to the parents of children with autism that the State’s response will be to provide those services — educational, therapeutic, respite and support — and not to heap blame and humiliation on parents who are doing their best to cope against terrible odds?

One of the most important things the Government can do is not to allow the Disability Bill to pass as it is now constructed. It must commit to recasting it and ensuring that it is rights-based legislation which will give people with special needs and people with disabilities the guarantees they demand so that services can be provided and cannot be withdrawn in future. The task force on autism went even further and called on the Government to pay urgent attention to the need for constitutional reform to ensure clearer provision for people with disabilities, including those with autism. We demand more urgent action on the part of the Government to implement this report fully.

The lack of priority given to children with autism is shown clearly by the long delay in getting the all-Ireland centre for autism in Middletown, County Armagh, operational. The centre should have been opened and functioning long ago. I do not accept the timeframe the Taoiseach gave in the Dáil this morning. We have waited long enough. Autumn 2006 is far too late. Both the Irish and British Governments must now provide all the necessary additional financial, personnel and other resources required to accelerate delivery of this essential resource. We want to see [733] it open this summer. This is an issue of equity of treatment for all children. We demand nothing less.

  Mr. S. Power:On behalf of the Tánaiste and Minister for Health and Children, I thank the Deputy for raising the matter on the Adjournment and giving me the opportunity to outline the position concerning this issue. One of the most positive features of the disability services is the strong partnership that now exists between all those involved in the planning and delivery of services. This partnership includes the Government, health boards, voluntary agencies, families and friends, and persons with disabilities themselves. The enhancement of the level of support available to people with disabilities and their families has been and continues to be one of the priorities of the Government. I am pleased that both this Government and the previous one have been in a position to make a significant investment in these services in recent years.

Since 1997, additional funding amounting to €643 million has been invested in health funded support services for people with intellectual, physical and sensory disabilities and those with autism. Some €400 million of this funding was allocated to services for persons with intellectual disability and those with autism. Services to people with intellectual, physical or sensory disabilities and those with autism is one of the limited number of areas in which additional revenue funding has been provided by the Government in any Department in 2003 and 2004.

It is recognised that the health-funded services in this sector have advanced greatly in recent years. It is also acknowledged that further work is required in the coming years. To that end I am pleased that the Government was in a position to announce on budget day a special disability multi-annual funding package with a value of close to €900 million over the years 2006 to 2009. This funding is being dedicated now for the period until 2009 to ensure the delivery of these high priority disability services. This package includes guaranteed additional current spending of almost €600 million. The Government has also agreed to allocate €300 million from the revised capital envelope to these high priority disability services.

The bulk of the new funding package will go to the health sector where it will be invested in services for persons with an intellectual disability and those with autism, services for persons with physical or sensory disabilities and mental health services. It will focus, in particular, on the provision of extra residential, respite and day places, extra home support and personal assistance, and extra places in community-based mental health facilities. Of the €70 million announced by the Tánaiste in the Estimates being made available for disability services and mental health services in 2005, some €40 million is being allocated to [734] services for people with intellectual disability and those with autism to enhance these services further.

With regard to the matter raised by the Deputy, the Health Act 2004 provided for the Health Service Executive, which was established on 1 January 2005. Under the Act, the executive has the responsibility to manage and deliver or arrange to be delivered on its behalf, health and personal social services. This includes responsibility under the Child Care Act 1991 for child welfare services. While I appreciate the Deputy’s interest, which is shared by all Members of the House, it would not be appropriate for me to comment on the detail of the topic raised by the Deputy given that the Child Care Act 1991 prohibits the identification of children who are the subject of care proceedings.

  Dr. Upton:I thank the Ceann Comhairle for giving me the opportunity to raise this matter on the Adjournment. Ireland has the highest incidence of cystic fibrosis in the world. Survival of cystic fibrosis patients in Ireland is much worse than in England, Wales and, most significantly, Northern Ireland. As St. Vincent’s Hospital in Dublin had 304 adult patients on its books at the time of publication of the Pollock report, the situation was reported as being stark. According to Pollock, cystic fibrosis patients and elderly respiratory patients are located “cheek by jowl in a tightly constrained space”. Segregation from an infection control point of view is difficult and the social mix of young cystic fibrosis patients and elderly patients, some of whom are incontinent, is very unsatisfactory.

A recent letter to me from one of the young adult patients, Simon, identified the following problems:

The ward which has been allocated to us is now being used for older men and women who are awaiting beds in Old Folks Homes or hospices. Because of this CF patients are suffering and we cannot get beds. At the moment, [31 January this year] there are three six-bedded rooms for women and one six-bedded and one three-bedded room for men. Out of these twenty-seven beds, older men and women who do not suffer with Cystic Fibrosis are taking up the majority. Some of these patients are on this ward up to one year... There are patients on the transplant list awaiting beds from casualty for a number of days. These patients are prone to the MRSA bug, which is in the hospital. No one is screened for this when they arrive in casualty . . . I am now in to the third week of a severe chest infection and I am reluctant to go back in to hospital, as God only knows what problems will arise. I am regularly admitted to hospital and it is difficult enough having CF without the added grief that I and others are given.

[735] I have been told of other incidents where, for example, an elderly patient climbed in to the bed of a cystic fibrosis patient when he went out for a few minutes. The result of this was that much valuable nursing time was taken up sorting out the problem, with beds having to be remade and disinfected and efforts made to prevent the elderly patient causing any other havoc. Many other such incidents have been reported to me by the young adults in the cystic fibrosis wards.

The Pollock report, published in February this year, made a number of observations that represented a serious indictment of the services and facilities available to cystic fibrosis patients in Ireland. Specifically, Pollock described the current staffing for cystic fibrosis patients as dangerously inadequate. He identified that approximately 40 staff serve the total cystic fibrosis population of 1,143. Based on recognised standards of care this should be 175 staff, which would require an increase of 338%. He also stated that the physical resources fall well below accepted standards, noting that those in St. Vincent’s Hospital are particularly poor. This is the largest cystic fibrosis centre in Ireland. The patient profile is one of young adults. That the primary centre for the treatment of young adults with a life-threatening disease can be described in a professional report as “seriously inadequate” is a disgrace. Furthermore, it is ironic that within 20 yards of the cystic fibrosis ward in St. Vincent’s Hospital there is a state-of-the-art extension, completed for more than 18 months and not yet occupied. Will the Minister investigate this and ensure the building is used for the purpose intended so other beds in the hospital may be freed up? Taxpayers’ money should not be squandered in this way while patients are left in a totally inappropriate environment.

Beds for cystic fibrosis patients should be in single rooms to avoid cross-infection. Patients should not expect to be left in a six-bed ward with patients suffering from respiratory or other infectious medical conditions. It is the risk of cross-infection which causes greatest concern to these young adults. Identification of the bacteria responsible for infection in cystic fibrosis patients is often complex and cannot be carried out in a routine laboratory. Why is there is no consultant microbiology service, backed up by a reference laboratory attached to the biggest cystic fibrosis centre in the country? As it stands, some samples have to be sent to the UK for identification. This delays treatment, thus further compromising the patient and hindering his or her opportunity for rapid improvement.

I ask the Minister to take account of the recommendations in the Pollock report and to visit the hospital for herself to see the conditions patients and staff must endure. The commitment of the medical, nursing and ancillary staff in the special[736] ist ward is above reproach. They struggle on a daily basis to deliver quality health care to a cross-section of patients with very different medical and nursing needs. However, it is not good enough that young cystic fibrosis patients are compromised because of a failure in our health system.

  Mr. S. Power:I thank the Deputy for raising this matter on the Adjournment and am delighted to have the opportunity to reply. The Health Act 2004 provided for the Health Service Executive, which was established on 1 January 2005. Under the Act, the executive has the responsibility to manage and deliver, or arrange to be delivered on its behalf, health and personal social services. This includes responsibility for health services for patients with cystic fibrosis.

The Cystic Fibrosis Association of Ireland commissioned Dr. Ronnie Pollock to review the existing hospital services for persons with cystic fibrosis in the context of accepted international standards. Dr. Pollock’s review was officially launched earlier this year. It provides an assessment of need for current and future cystic fibrosis patients and makes a number of recommendations with regard to the numbers and categories of staff appropriate for a modern, multidisciplinary cystic fibrosis service. The report concluded that cystic fibrosis care should be provided in fewer units of more significant size so that viable staffing levels can be maintained and to ensure staff have a sufficient workload to enable them to maintain their skills level.

Following publication of the Pollock report, the Health Service Executive met representatives from the Cystic Fibrosis Association of Ireland and agreed to the latter’s request to establish a working group to consider the report’s recommendations. The group, which includes representatives from the Cystic Fibrosis Association of Ireland and the Health Service Executive, as well as relevant clinicians, will review the current configuration and delivery of services to cystic fibrosis patients, in hospitals and in the community, and make recommendations for the improvement and development of services. I understand the group will hold its first meeting in April.

The Health Service Executive, which is designated as the national adult cystic fibrosis centre, is pursuing with St. Vincent’s Hospital proposals for improvement to the physical infrastructure to support the highly professional treatment and care services provided there.