John Dolan (Independent) | Oireachtas source

The Deputy referred to a combination of resourcing, financing and organisational issues. It is beyond that. I am not saying these are not issues, however. We are being wasteful by not coming at this from a different perspective. We keep talking about the cost of everything and we are rationing all the time. I accept cost is an issue but we have to get our heads - our spirits - into a place where we have two choices. We either let these people wither and die or we do what has to be done over a period to ensure they can participate fully in society. That means getting back to some things and opening another front on prevention and early intervention, while drawing people, families and their support groups into the work and getting a more genuine partnership.

Services have been sliced and diced and it is said this is the way they will be provided. That is more and more madness. Yes, people need a roof over their heads and they need people to help them in residential settings and to have activities. Why are we looking at day programmes as the standard and not asking why are these people not migrating into activities in the community, work and jobs or whatever? It needs to be approached that way and that one starts migrating from the dysfunctional approach we have.

To be a charity, the test is that one has to be regarded as a public benefit. All of the organisations that are part of the State are there because they are considered to be a public benefit. Now one has not got the State and the charities at two ends of the spectrum. What one has is a different governance. The HSE, Health Service Executive, is a creature of the State, as well as all the other public bodies. An organisation that sets itself up is a creature of the people who set it up. Article 40 of the Constitution gives people the right to set up organisations and unions. That is a basic democratic principle.

Recently, I was at some meetings with colleagues from Poland and Hungary who are quite concerned about the shrinking of the civil society space. That does not give licence to not being a good well-organised or well-governed entity, however. There are many smaller organisations which get little or modest funds from the State. They might be dealing with people with a particular condition, of which there may not be a significant number. They need to create a brand or public awareness around that condition to ensure people who get a diagnosis of that particular condition will come to them. They also need it to be able to raise funds and operate in the public sphere to create further awareness.

There are complexities around this. In the private sector, there is legislation to stop company amalgamations because they might not be good for competition. We need to look at this. What about the idea of autonomy and choice? There has been a blossoming of smaller organisations around mental health, neurological issues, local groups and suicide prevention. There is a tension between the benefit of keeping it at a tidy number and the benefit of allowing 20 groups create a head of steam about a certain condition.

The Chairman said the charities area is quite a problematic one and there needs to be more cohesion and accountability. That could be said of the whole spectrum of State services, private businesses and voluntary organisations. I am in the Disability Federation, an umbrella organisation for 130 groups, some of which are very large and significant direct service providers. It might be like church-run schools where there is a time when an organisation goes from being on the edge and providing a service no one else is to becoming funded and core-supported. There is a time to relook at that.

For the other ones, it is more about how we can put in back offices and get them to work in tandem. Take three organisations dealing with children who have similar conditions. It would make sense that they would not all be trying to have someone in Cork and Kerry to visit the children they deal with.

We went down a road in the early noughties to deal with and improve governance in organisations. It was very hard to get any interest from the State. We only woke up to the idea of governance when the banks went wallop. Understandably, we have been very strongly on the side of compliance since. The other side of governance is the UN Convention on the Rights of Persons with Disabilities. That states all of Ireland has to dance to a particular tune to ensure people with disabilities can be included. This can become the hook for us to have hard conversations, not just with Departments but with organisations, that this is not just about the organisation or agency on its own anymore but that this must be moved on at a societal level. I am not going to defend poor and wrongful practices because they harm people with disabilities. I know that so well.