Dr. Joanne McCarthy:

I thank the Chairman and members for giving us the opportunity to participate in today's discussion. We acknowledge that this is the second of two days of discussions with voluntary organisations in the health sector, which shows a welcome commitment on the part of the committee to get under the skin of this issue. The Disability Federation of Ireland, DFI, is a national support organisation comprising more than 120 member organisations. We work to create an Ireland that is fully inclusive of people with disabilities. It is important to note that we are not distinctive in the work that we do; in fact, there are huge interlinkages with Epilepsy Ireland, for instance, which is a member of DFI, and we are a founding member of The Wheel. We all work well together to create a strong community infrastructure which supports people with disabilities and those at risk. Members can find more information about DFI on our website.

Like our colleagues, we fully endorse the recommendations contained in the independent review group report, notwithstanding the reality that our member organisations will face significant challenges in implementing them. One of the most important recommendations is the commitment the IRG is seeking to resetting the relationship between the voluntary sector, on the one hand, and the HSE and the Department of the Health, on the other, in the delivery of services. We have heard stark evidence, both today and at the meeting of this committee on 19 June, of the need for that to happen. It is one of the issues I hope members will take away and reflect upon following these meetings. The reality is that the relationship between the State and the community and voluntary sector is broken. There are significant failures in the process of agreeing on and delivering necessary supports and services to people with disabilities, whether in acute settings such as day services, respite and 24-7 residential services, as members heard on 19 June, or in the types of community-based services we are talking about today. There is no planning mechanism in place to respond to changing needs, no effective costing mechanism, no clarity on what the State is willing to fund, and no agreement to fund services to their full cost. These are core issues that go to the heart of the ability of organisations to provide high-quality services to some of the most vulnerable people in society.

Having noted the interlinkages between organisations in the sector, it is important to consider the complexity that underlies that commonality. Members heard at the meeting on 19 June and again today that while we have agreement around the issues and recommendations in the IRG report, experiences vary greatly depending on the organisation. We all agree on certain points, namely, that the nature of the HSE relationship is broken, there are chronic funding deficit issues that must be addressed, there is a difficulty in recruiting staff and there are pay issues and issues to do with the service level agreement as the mechanism for agreeing contractual relationships. However, those issues are experienced differently depending on whether an organisation is community-based or one that delivers what are seen as core disability services in the context of residential or day services. We all know there is a funding crisis. Most organisations took cuts during the recession and, in most cases, there was no attempt to secure agreement on how those cuts would be implemented and the impact they would have on service users. There may have been that type of engagement with some of the larger organisations but not generally. Fifty organisations are now in a process to achieve pay restoration, but most organisations in the sector, including the ones we represent, are not included in that process. In other words, funding is a general problem, but how it is being experienced is not equitable across the system.

At the meeting on 19 June, we heard that the sector is facing a deficit of between €30 million and €40 million. In fact, that estimate needs to include the types of things we have been discussing today, where organisations are running down their savings and using important fundraising money to supplement the cost of delivering core disability services. This goes to the heart of the need to secure a multi-annual investment programme and, in addition, an agreement on the types of services we wish to deliver into the future. I take this opportunity, before the Oireachtas goes into recess, to remind members of the importance of agreeing a list of essential services. We are all agreed that the first thing that must be done is to establish a forum and agree on its charter, that is, the work it will be tasked to do. After that, the next big challenge will be agreeing the list of essential services. One option might be to seek to continue to deliver the services we currently deliver into the future.

If we do that we will be missing a significant opportunity to actually use something like the forum to deliver on Sláintecare.

I will offer an example of how the money for disability in the 2019 budget is used. A total of €1.9 billion is going into disability services. That is a significant amount of money - we all have to acknowledge that. Decisions have been made around how that money was to be applied. Fully 90% of that funding goes to fund residential respite and day services. I am not suggesting these are not needed - in fact, we heard on 19 June that more is needed - but it means only 10% of €1.9 billion is used to resource and fund centre and community-based services. Day services and respite services respond to the need of approximately 30,000 people with disabilities and their families. Yet, there are over 600,000 people with disabilities living in Ireland today. Most of those are struggling in their own homes with changing needs and conditions. The community-based organisations offering the types of services we have heard about today help to keep these people living in their own homes, staying as well as possible and away from heavy expensive services. If that is not value for money, then we have to ask questions about what is.

Before coming in today we did a quick tour de la tablewith some of our member organisations to ensure we were still on the pulse of the issues being experienced by them. I will offer a quick snapshot. These are small organisations that help those with epilepsy, multiple sclerosis and post-polio. They have family names. Committee members will know them because they are in the local communities. Most carry a service arrangement with between two and nine HSE community healthcare organisations. We need to consider the administrative burden of this on a small organisation. None of these organisations is fully funded. We heard the example of how the epilepsy organisation gets €3,500 but it costs €50,000 to deliver the service. There is no engagement to discuss how or what type of services will be delivered and how this will be funded. That is a common experience across the board. Some organisations have been feeling the pressure to use and divert existing resources to deal with increasing health demands. A person from the Blanchardstown Centre for Independent Living explained that the centre has a bus that it had been using to support its members for social outings and engagements. We all know the social isolation that people with disability experience. That service is really important to maintain people's mental health and to create connections in communities. Increasingly, because of the increasing health needs of that particular cohort of service users - I hate that term - or people with disabilities who use the services, the centre now has to use the bus to ferry people to and from medical appointments. They are doing core health business but that has never been acknowledged in the service arrangement. Again, at issue is the fact that the organisations are not allowed to record deficit and this causes major problems. Oftentimes, the organisations not have a formal face-to-face relationship or even a meeting once a year with the HSE to agree the service plan. These are core basic issues that need to be addressed to support the network of vital community services that support people. I will hand over to the chair of the Disability Federation of Ireland who will make some further comments.