Michael Mullins (Fine Gael)
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I welcome the new Minister of State, Deputy Paudie Coffey.

John Crown (Independent)
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Cuirim fáilte roimh an Aire Stait. Comhghairdeas. I wish him the best of luck in his new responsibilities.

I raise the issue of the defunding of the Neurological Alliance of Ireland which was founded in 1998 by concerned activists and specialists, principally Professor Orla Hardiman. An umbrella group was founded to provide for competency in advocacy in dealing with a group of very uncommon diseases. Some are so uncommon that there might have been one, two or three sufferers from the disease in Ireland. People with these diseases have great difficulty in seeking an advocacy position. They did have a commonality of interest in terms of physical impairment, cognitive impairment and emotional impairment that could occur and in terms of the supports needed. During the late 1990s and the early years of this century the group was extremely active and had a number of practical inputs and outputs. It managed to formulate new standards of care for patients with disabilities to varying degrees and also laid out a road map which was subsequently used by Comhairle na nOspidéal. From then on it found that its inputs were being taken on board by the HSE in terms of the clinical leads programme. It also runs an annual brain awareness project.

It has recently been announced that the group has lost its entire funding. It has received annual funding of €60,000 from the Department of the Environment, Community and Local Government through the scheme to support national organisations. The application for funding in 2015 has been turned down. This is the only funding the organisation receives. As a result, the alliance will be forced to cease operations in December. It asked for €80,000, an increase of €20,000 owing to increased demands on the organisation being the only umbrella group. Let me reiterate that the group has no other source of funding; it is totally reliant on the Department of the Environment, Community and Local Government's scheme for its core funding.

This is a very lean organisation. There are many charities that need to look at their inner workings in terms of being large, bloated, inefficient and top heavy, with big public relations and other departments. This is a very small organisation. It has one development manager who works part time, a four fifths basis, and an administrator who works part time, on a two fifths basis. The entire board give of their time and services for free. The money is spent on core running costs - the primary members of staff, rent and so on.

It will be the experience of those familiar with the great work done by the group that it has played a critical role in raising awareness of brain and other neurological diseases, facilitating fund-raising and increasing the focus on research in these activities and also in making sure decisions made by the Department, the HSE and other support agencies are well informed. The small amount of money allocated has been extremely well spent. I do not like to get up on my own hobbyhorse, but the amount of money spent on the Neurological Alliance of Ireland is spent many times over in health and social services and, I suspect, the Department of the Environment, Community and Local Government on public relations. The money would be repaid to the State amply in terms of improved outcomes for patients who suffer from these conditions, many of which, as I said, are so rare that those who have them really believe they are on their own. The alliance has given them cohesion and critical mass. I, therefore, urge that the matter be looked at again.

I thank the Minister of State for coming to the House so soon after his appointment. This is appreciated.

Michael Mullins (Fine Gael)
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I thank the Senator. This is the first visit of the Minister of State, Deputy Paudie Coffey, to the Chamber to deal with matters on the Adjournment. I wish him well in his new role.

Paudie Coffey (Waterford, Fine Gael)
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I thank the Acting Chairman. I also thank Senator John Crown for placing this important matter on the agenda. I have a detailed response which will help to clarify how the schemes are funded and assessed. I can respond again should the Senator wish to raise further issues.

On behalf of the Minister, Deputy Alan Kelly, I am pleased to have an opportunity to address the Seanad on the funding scheme to support national organisations in the community and voluntary sector. The funding scheme to support national organisations in the community and voluntary sector aims to provide multi-annual funding for national organisations towards core costs associated with the provision of services. A new scheme commenced from 1 July. The overall budget for 2014, including the previous scheme and the new one, is some €3.1 million.

During 2013 the Department carried out a review of the scheme which found that it had fulfilled its main objective of providing multi-annual funding for national organisations towards core costs associated with the provision of services. The review recommended that organisations be required to demonstrate clearly the added value of the work proposed. The effective use of core funding in recipient organisations also requires that robust governance and cost control procedures be in place within these organisations.

The new scheme was advertised for applications earlier this year. Pobal was asked to undertake an assessment of the applications received, given the organisation's significant experience and expertise in terms of the design of assessment criteria and completion of assessment functions.

Two well-attended information sessions were hosted by the Department and Pobal during the application process to outline the requirements of the new scheme. Application guidelines were also issued that outlined the scoring process, including capacity of the organisation, strategic fit, demonstration of need, achievability of the proposal and value for money. Organisations were provided with support in the application process, including a dedicated e-mail address as a preferred contact method to deal promptly with queries. Inquiries were also dealt with by telephone.

Some 157 applications were received by Pobal. Of these, three did not meet the basic eligibility criteria. The remaining 154 applications were appraised by Pobal against the criteria as outlined in the application guidance. In order to make funding available to as many organisations as possible within the prevailing resource constraints and taking into consideration the results of the appraisal process, 55 applications were approved for funding for the two-year period from 1 July 2014 to 30 June 2016.

Pobal has put in place a dedicated team to deal with inquiries from applicants and to provide detailed feedback. There is also an appeals process and Pobal has provided applicants with detailed information on it. As the appeals process is now live, it would not be appropriate for me to make any further comment on the funding process or the application of any particular organisation.

John Crown (Independent)
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I thank the Minister of State, whom I am conscious is brand new and has been thrust into the firing line on this issue. I will try to be informative, instructive and collegial in my points.

I have the score card that the Neurological Alliance of Ireland received as part of the process. In university scoring system terms, the alliance got honours in capacity, need and achievability and a high pass in value for money. The only aspect it failed was strategic fit. For someone who is as sceptical about bureaucracy-waffle as I am, this seems insubstantial ground for taking a small grant away from an organisation that deals with many patients with different diseases.

Of the 25 groups under the alliance's umbrella, 11 applied for funding from the Scheme to Support National Organisations, SSNO, individually. None, zero, aucun, rien, nada was accepted. There has been a great deal of focus in the House and elsewhere on Huntington's disease, a cruel, devastating, incurable and inevitably destructive disease for which our society has made little provision in terms of, for example, qualifying for a medical card. The Huntington's Disease Association of Ireland has received €22,500 per annum since January 2008, but it had its funding decreased in 2009 and has now been defunded completely.

I have been asked to bring a matter to the Minister of State's attention. Perhaps he might discuss it with his Government colleagues who have more direct responsibility for health. Neurological services in Ireland fall dramatically short of what is available in other developed countries. We are not doing well. These groups have asked me to make the case as strongly as possible for a sustainable funding stream, one that is peer reviewed and publicly accountable, to be put in place for these modest but important core activities. I hope that our interaction tonight will provide the Minister of State with the opportunity and inspiration to raise this matter with others involved in the decision making process, particularly as it relates to the score card, which looks extremely odd.

Paudie Coffey (Waterford, Fine Gael)
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I appreciate the Senator's genuine concerns in this matter and take on board the good case he has made. I discussed the issue with the Minister for the Environment, Community and Local Government, Deputy Kelly, this evening after I saw that this Adjournment motion had been tabled. We are prepared to reconsider applicants with disability or health-related functions to determine whether anything can be done in the short term. However, there must be co-operation with possible amalgamations - we do not know whether that will happen yet - of some of the groups that have similar interests so as to avoid duplication. The Senator should be satisfied that the Minister and I have agreed to re-examine the matter.

John Crown (Independent)
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I would like the Minister of State to convey my gratitude to the Minister, Deputy Kelly.