Pádraig Mac Lochlainn (Sinn Fein)
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I am not a member of the committee and the protocol is non-members ask their questions last, as is right and proper. I appreciate the opportunity to contribute to the discussion.

I was asked by the Inishowen Childrens Autism Related Education, iCARE, organisation in Buncrana, County Donegal, from where I come, to attend the meeting and tell its story as part of this dialogue.

The issues with the HSE are often to do with what are referred to as silos. There is no communication between its various parts. It appears the HSE wants to extend this approach to the community and voluntary sector so it has the same lack of professionalism and joined-up approach. This is why the recommendations of the independent review group are welcome, particularly recommendations 8.1 to 8.4, inclusive, which deal with the list of essential services.

It is critical that we define the essential services in partnership with the community and voluntary sector. Then we get into mapping where they are, the charter, which is a framework, and, of course, the forum. This has been referred to today. It is essential the recommendations are implemented. It is self-evident that these must be done. As has been said, in February it was welcomed by the Minister but here we are. Everybody who lives in the State understands that if it were not for the community and voluntary sector, people with disabilities, the elderly and young people in their communities would be left behind. All sectors would be left behind if it were not for the community and voluntary sector.

iCARE was established 18 years ago in my home town of Buncrana. It is a groundbreaking organisation for children on the autism spectrum, which works with schools and the local community. The service has grown and grown with no money from the State over all of those years. Last year, it teamed up with Bluestack Special Needs Foundation in south Donegal, which has been in existence for 17 years, again with no funding from the State. Both organisations, one at the top of Donegal and one in the south of the county, provide essential services, respite and support to children with disabilities in both areas with no State funding. They came together, along with Extern, to make a professional application for funding under the ability programme. It should have been a no-brainer but it was turned down.

They decided enough was enough and put together a map of disability services. I am sorry to be somewhat parochial about this but it is a reality where I am from in Donegal. If, on a map, a line is drawn from Dublin to Galway in so many respects, the services above that line are absolutely appalling. There is an out of sight, out of mind mentality. These organisations decided to do something about it, stood up and found their voice. Significant political pressure then followed from the physical manifestation of the map where we could see the absolute discrimination and failure. Both organisations received approximately €35,000. We thought this was a breakthrough. The HSE found the money somehow. Then we got to the beginning of this year, and again the money was found with another €35,000. Bluestack Special Needs Foundation needs €150,000 per annum - this has been costed by the HSE - just to keep basic services going. iCARE needs €100,000 per annum. What has been happening is that the parents, who are already carers and under ferocious pressure, must hold fundraiser after fundraiser and they are totally exhausted. They are dead on their feet. They were about to close the doors of both organisations, which would have been a disaster for the communities.

iCARE got one third of what it asked for and Bluestack Special Needs Foundation received approximately one quarter. I am angry about something I recently found out. Last year, we met the Minister for Health and Minister of State with responsibility for disabilities and we thought the Government had intervened and sorted this out but it had not. The HSE, under political pressure, found money from somewhere, and God knows somebody else must have lost out, to solve the problem. It was not resolved by the Department or the HSE at national level. It was a local solution to a local problem. No one in the senior echelons of the HSE is listening. Nobody is listening in the Department of Health. This is about respect and the democratisation of how we spend our money.

I always say to community groups, and particularly to disability groups, that if they were to knock on every door in their communities and ask how people would like their taxes to be spent, who would say they do not want them to be spent on disability organisations or on young people with disabilities so they can have dignity and achieve their potential in life. It does not happen because we have an organisation called the HSE that tries to replicate its silo approach in the community and voluntary sector.

This is about respect. I have sat here to have the opportunity to speak and I appreciate the committee giving me this platform to say on the record that the report from Dr. Catherine Day must be implemented. We have to get beyond the approach that has been there.

If we talk to citizens and ask them how much value they put on community and voluntary organisations, particularly those organisations working with people with disabilities, they would absolutely demand that those organisations receive the resources they need because they save the State money through supporting carers and families and giving respite to people who are everyday heroes. I urge the committee to put as much pressure as possible on the Minister for Health to ensure the review is fully implemented and that the HSE treats these organisations with respect and partnership in a democratic fashion using the resources of the State to deliver services to people who need them the most.

These are my comments. They are not questions. I just wanted to tell the story of iCARE and Bluestack Special Needs Foundation, what is going badly wrong in the State and why people do not want this to happen but the State and its apparatus allow it to happen.