Pádraig Mac Lochlainn (Sinn Fein)
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In recent days we celebrated the 18th birthday of the iCARE organisation in the Inishowen Peninsula of Donegal. It provides precious support to more than 100 children and young people with autism and their families. It is a vital service, not just for the Inishowen Peninsula but further afield. For all of these 18 years it has kept the door open by relentless fundraising and has had tremendous support from the wider community. We are speaking about parents and carers who are tired and weary and who have been taken for granted for far too long by the State.

The HSE refers families and young people with intellectual disabilities to iCARE but until this year, when it provided some funding, it had not provided funding resources. Not so long ago in this Chamber I held up a map that showed where the funding went throughout the 26 counties of this State. Out of a large number of organisations, only one north of the famous Galway to Dublin line got funding. The Bluestack Special Needs Foundation, which is based in Donegal town, is fantastic. It, iCARE and Extern applied for funding and, yet again, were turned down. There was absolute outrage at this and it was clear there was discrimination against the people of Donegal. We all stood together and the HSE has finally given some funding to Bluestack Special Needs Foundation and iCARE this year.

What the families and carers in the Inishowen Peninsula and the rest of Donegal, iCARE and the Bluestack Special Needs Foundation need to know now is that there will be a service level agreement with the HSE with funding on an ongoing basis to take the pressure off them. I understand that following a meeting last Friday HSE management in the region, including Donegal, is recommending funding for the two organisations. The decision now lies with the senior management of the HSE, the Department of Health, the Minister of State with responsibility for disabilities and the Minister for Health. I am asking for confirmation that both organisations will have the funding they desperately need and the pressure will be taken off them. They cannot continue. Both organisations almost closed this year. That would have been a disaster for the families, children and young people with intellectual disabilities and other disabilities. We cannot have repeat of this in 2019. We need it dealt with once and for all. When we think that iCARE has waited 18 years and Bluestack Special Needs Foundation has waited 12 years they have proven the need. They have worked tirelessly and now need State funding. I urge the Minister of State to give us good news today.

Catherine Byrne (Dublin South Central, Fine Gael)
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I am taking this matter on behalf of the Minister of State, Deputy Finian McGrath. I acknowledge the Senator's comments and I agree with him about the many community organisations running services on the ground. Without constant fundraising by their members and extended families many organisations would have huge problems. I acknowledge this.

As the Senator is aware, iCARE provides a range of activities for children and young adults with autistic spectrum disorder in the Inishowen area. The organisation also provides support services for siblings and parents of children and young adults with autism spectrum disorder. I also acknowledge Bluestack Special Needs Foundation's extraordinary achievements since it was established in 2006. The foundation operates a range of educational, practical and emotional support programmes using a family support model and provides evening and weekend activities as well as summer camps and a diverse range of activities. Through its funding activities, the foundation has made very significant donations to charities in the area over a number of years. The family-centred approach adopted by iCARE and Bluestack is an important move away from a system designed to suit the needs of the service provider and towards a system that is designed to meet needs of service users and their families. This model ensures that families are empowered by being supported and included in the planning of their children’s care.

While the HSE does not have a formal funding agreement in place with Bluestack Foundation, I understand it has, on occasion, received modest funding through the national lottery, including €3,000 in 2016 for the purchase of equipment and €5,000 towards the cost of summer camps in 2017. Following a request for urgent funding earlier this year, the HSE met representatives of Bluestack Special Needs Foundation and funding of €36,000 was awarded to assist the organisation.

I understand that both organisations have submitted current funding applications to the HSE. The HSE's national service planning process for 2019 is under way. Pending completion of this process it would not be appropriate for the Minister of State, Deputy Finian McGrath, to comment on specific funding requests at this time. We know that, sadly, there was a time when members of our society with disabilities, whether sensory, intellectual or physical, or indeed those with a learning difficulty, were excluded from many aspects of everyday life, and often, unfortunately, stereotyped due to ignorance, prejudice or misinformation. The success with which iCARE and Bluestack have integrated their services into the community goes an enormous way towards challenging this historic exclusion and is very much to be welcomed.

The Government remains committed to providing services and supports for people with disabilities, which will empower them to live independent lives, provide greater independence in accessing the services they choose and enhance their ability to tailor the supports required to meet their needs and plan their lives. As part of this commitment a radical programme of reform of disability services is under way. This significant programme of reform is set out in policies such as Transforming Lives, Time to Move on from Congregated Settings and New Directions. Implementation of these policies will continue to have a practical and tangible impact on the lives of young people and their families.

Denis O'Donovan (Fianna Fail)
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Senator Mac Lochlainn may ask a brief supplementary question, bearing in mind that the Minister of State, Deputy Byrne, is not the line Minister.

Pádraig Mac Lochlainn (Sinn Fein)
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Absolutely, but I am mindful the Department officials are following the debate and they are the people who need to pay very close attention. There is much positive commentary about iCARE and Bluestack Special Needs Foundation and that is very welcome, particularly the model they use that integrates the young people, children and their families and works in partnership with the wider community. It is a fantastic groundbreaking model but the organisations are being taken for granted. This is the point. They do not need pats on the back. They do not commendation. They need money and resources. They need the ability to deliver these services on an ongoing basis.

There was absolute funding discrimination in the outrageous allocation earlier this year. It is shocking that an EU co-financed programme with millions of euro for disability support organisations throughout the State - a so-called national programme - included only one organisation north of the line from Galway to Dublin, with Donegal excluded. A very large geographic area was totally excluded from funding. On the back of the outrage from this some funding was provided to both organisations. What we need now is for this to be formalised. We need a service level agreement for iCARE and Bluestack Special Needs Foundation and we need it confirmed this year. I am delighted the HSE in Donegal is backing us 100%. We need the Government to do the same and we need confirmation of this as soon as possible.

If confirmation is not given by the end of this year there will be absolute war from the people of Donegal. We will not accept these two organisations being left behind again. If the Government does not do what is right this time the people of Donegal will have a war with the decision-makers in Dublin.

Catherine Byrne (Dublin South Central, Fine Gael)
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I take on board the concerns and passion with which the Senator has spoken about the two services. I will bring back all of his issues. It is important we acknowledge organisations such as these and if that acknowledgement comes to me in a statement such as the one I have here, I must read it out and acknowledge the fact. It is not about just patting people on the back for the sake of it, it is about acknowledging sincerely the fact these two organisations do wonderful work. I agree with the Senator that we need to put our money where our mouth is at times. These are two organisations about which he has spoken. I will convey his concerns to the Minister of State, Deputy Finian McGrath. I will ask him, in the context of the HSE's national service plan, to consider the two organisations in a different light regarding the views of the Senator, and I am sure his views are shared by more people in Donegal. The two services provide important individual and family supports. I will convey the Senator's profoundly thoughtful concerns to the Minister of State.

Denis O'Donovan (Fianna Fail)
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Perhaps the Minister of State, Deputy Finian McGrath, might meet the Senator as well.