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Dáil
‹ Ceisteanna ó Cheannairí - Leaders' Questions

Respite services for disabled children

Summary

Deputy Doherty raised families being left without respite, including the rejected proposal to reopen ten respite beds in Cork and the case of Julie Anne Cunneen’s son. The Tánaiste said funding is available, but staffing shortages are preventing services from operating fully.

Níl dabht ar bith ann ach go bhfuil tuismitheoirí agus cúramóirí á ligean síos ag an Rialtas seo agus ní féidir teacht ar sheirbhísí faoisimh do leanaí agus dá ngaolta. Tuigimid gur dhiúltaigh Feidhmeannacht na Seirbhíse Sláinte do thogra an Aire Stáit, an Teachta Rabbitte, deich leaba fhaoisimh a athoscailt do leanaí faoi mhíchumas i gContae Chorcaí, buille eile do thuismitheoirí agus do theaghlaigh.

On RTÉ news this weekend, we learned about Julie Anne Cunneen from Upper Glanmire in Cork and her 16-year-old son Liam. Liam is a pupil at Carrigaline Community Special School. The family is at breaking point. It has been put to the pin of its collar because it cannot access overnight respite services. Julie Anne told RTÉ that she rates her pain between eight and nine on a scale of one to ten. She told RTÉ that Liam's pain is about seven or eight. Julie Anne tells us that she has never had access to overnight respite services during the 16 years Liam has been on this Earth. She has asked the HSE for it time and time again but she said she never got it. For that family to be treated in that way is utterly unacceptable but it is not unique and that is the problem.

This is a massive issue in Cork but it is also a problem for patients and families across the State. In my county of Donegal, parents are forced to go on local radio to express their outrage and concern about respite services being suspended at Drumboe Respite House in Stranorlar for over three years. In Wexford, parents, carers and those supporting them staged a protest down Gorey's main street following the news that respite services have been withdrawn in St. Aidan's Day Care Centre at Mulcahy House for the next three months. These parents describe themselves as desperate, isolated and exhausted following the announcement and they are not alone.

For parents and caregivers across the State be they in Donegal, Wexford or the Tánaiste's county of Cork, these respite services are not a luxury. They are critical. They often provide the only opportunity for these families to attend a family wedding or the funeral of a loved one or simply to recharge. The disruption caused by respite services being withdrawn, cancelled or closed cannot be over-stated and it is happening on the Tánaiste's watch. Parents and caregivers are given little warning when services are closed and little clarity as to when they will re-open.

Families with children attending Carrigaline Community Special School say they cannot even get on to the waiting list for overnight respite services because the school the children are attending is not operated by what they call a traditional disability service provider. That is a farcical state of affairs that has gone on for far too long. This morning, we hear that the HSE has rejected the proposal for the Minister of State, Deputy Rabbitte, to re-open ten beds for children with disabilities with Cork. It is ridiculous that these services are not being fully staffed by the HSE in the first place but for the HSE to dismiss the Minister of State's proposal out of hand is simply embarrassing. In the middle of all of this, there are children, families and parents who are desperate for respite services. Julie Anne has not received overnight respite in 16 years.

Does the Tánaiste accept that children, adults and families are being failed and failed again by this Government because of the lack of services across the State? How does he stand by the fact that as we speak, there are ten empty beds in his county of Cork for respite services that are not operational? There are 12 beds in County Wexford that are closed for the next three months. A respite centre in my county of Donegal has not operated for three years. Surely this is an example of a Government that is failing to plan. What comfort and assurance can the Tánaiste offer? What is he going to do as Tánaiste to ensure these families are no longer failed by the State and that they will get the support they desperately need?

Comment on this

Aontaím go bhfuil géarghá ann le faoiseamh a thabhairt do theaghlaigh agus do leanaí atá gan faoiseamh tithíochta, go háirithe leanaí le riachtanais speisialta. Táimid ag déanamh gach aon iarracht na seirbhísí a chur ar fáil. Ní ceist áiseanna í seo. Ní ceist tacaíochta í. Tá na háiseanna ann. Tá an t-airgead ann. Is éard atá in easnamh ná na foirne a chur ar fáil agus na daoine a mhealladh isteach sna seirbhísí chun oibriú sna hionaid fhaoisimh seo.

I am fully aware of the situation in respect of Carrigaline Community Special School in Cork and respite services across the county. I would have met with the parents of Carrigaline Community Special School, which is a recently established school and the first of its kind under the ETB in the Cork area given a previous absence. I was involved in asking the ETB to come on to the scene to provide special education. This along with traditional providers is something we should welcome.

School patronage should not determine the availability of respite care for any child. All providers have service-level contracts with the HSE. In my view, those service-level contracts do not differentiate or in no way should be used to say that because you go to one particular school, you cannot avail of respite services provided by a provider. The children in a given disability area must be treated equally when it comes to the provision of services. The HSE confirmed to me that this is the case. It cannot just be about traditional practice. That would be a concern of mine having met the parents - that it is their view that because their children attend an ETB school, they do not have the right to respite services provided by traditional providers. The HSE will meet with all providers to make sure that is not the case. That is not the Government's position.

As the Deputy said, some services are suspended. The ten beds to which he referred are not operational because of staffing issues but my understanding is the HSE has not rejected the Minister of State's proposal that a combination of permanent staff along with agency staff be used to operationalise those beds. I believe the local HSE is working to try to create alternatives or models to see if we can operationalise those beds or provide respite to children in the area and likewise across the country. It is not a question of funding. The capital is there and will be there to provide additional respite facilities for children in addition to therapies. Other forms of provision will be utilised to attend to and provide for the needs of children with special needs.

I understand the anxiety of the parents involved. Many of those parents had anxiety two years ago about getting school places. At the time, we worked with the NCSE to establish new schools. We are working to make sure there is adequate therapy provision. If one form does not work in terms of the traditional way of recruiting therapists, we will have to look at other ways because we must look after the child and the families. That should be uppermost in all our concerns and it is in mine and that of the Government.

Comment on this

With respect, the Government is not looking after the child and the family. Julie Anne went on national radio and said that for 16 years, she has not had one night of overnight respite. She puts her pain level between eight and nine and that of her son between seven and eight. She has been failed over and over again. How can the Tánaiste say the Government is looking after the child and the family in that scenario? How does he say that to the people who took to the streets in Wexford? Their service was withdrawn with little notice. There will be no respite in that area for three months. What does the Tánaiste tell the mother who comes to me in Donegal where Drumboe Respite House has not been available to her two children with special needs for the past three years?

I have raised this matter on the floor of the House many times, including two years ago. I was told at that point that it was in hand and would be reopened. It was going to be reopened last year. Earlier last month I was told it will be the end of the year before it will be reopened. These children are being failed over and over again. That is down to a failure to plan and to ensure the workforce, capacity and facilities are in place. With respect, these are some of the most vulnerable children and adults in the State. What will the Government do to ensure the ten empty beds in Cork are reopened, the 12 empty beds in Wexford are reopened and that the centre in Donegal provides respite for children and adults there?

Comment on this

Every year, resources have been increased and expanded, and correctly so, in respect of special needs and the families to whom Deputy Doherty referred and whom I have met. There is not a Deputy in the House who has not met families in situations such as this. Staffing is now the issue. I refer here to the recruitment of staff. The funding is there to recruit staff to these services and facilities, and funding will continue to be provided and it will be expanded. In the forthcoming Estimates, there will be additional funding for disabilities generally and for children with special needs in particular. The focus of the HSE and the providers is to do everything possible to recruit staff and provide a service that is without discrimination, in the context of whatever school a child attends, and that provides the respite care, physiotherapy, speech and language and neurorehabilitation that children may require. That is the approach. We are working with the HSE to make sure it can achieve the capacity that is required to open these beds.

Comment on this