John Dolan (Independent)
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I wish to endorse the opening remarks made by Senator Kelleher on the valuable work done by this committee and the impetus it has given to a vital national issue.

I welcome the opportunity to make a short presentation to the committee. If people are confident that we have a robust and comprehensive health service, they will have the confidence to participate in the economic and social life of the country. This matter is bigger than health care. It has to do with having a sound fabric of health and active people in society, as best one can achieve doing so.

I will make a number of points that struck me having spent nearly four decades involved in the disability movement in one way or another. Disability, disabling conditions and chronic illnesses are not discriminating in who they affect. They cut across all areas of society: the young and old, people living in urban or rural regions, the well-off, those experiencing poverty and those who are close to poverty. Therefore, disability is major issue for Ireland and is not a sectoral issue. The health status of a population is critical to a society's economy, social development and achievements.

I have observed that what we now term as disability, and I include mental health, is very different from four decades ago. It would be useful for me to refer to disabling conditions. We know so much and advancements have been made in health systems, diagnostics and all the rest. There are many conditions that can be kept under control by a range of treatments and whatever. Therefore, we must realise that we are all on a continuum between being wholly healthy and having issues and some very severe issues with restricted ability and reduced functioning. It is important that we realise there is no such thing as them and us. It is a fact of life that we are all on that slope and we should not be upset about it either as it is life.

Some people are born with disabilities but they do not make up a huge number of the overall population. Many people acquire disabilities over the course of their lives for a multitude of reasons such as injury, self-harm, lifestyle, a predisposition or what we might simply call, perhaps not too correctly, ageing. Some people can suffer more than one condition. For instance, there is a huge correlation between the number of people with Down's syndrome who will go on to develop a type of dementia.

We did not know that 30 years ago because previously these folk did not live past 30 years of age. It is to be celebrated that they are living into their 40s, 50s and 60s, but we are wrong if we do not plan for people having longer lives and the other things that can happen to them. While people with disabilities and disabling conditions are a minority of the overall population, they are a majority in the use of health services. It is not just a numbers game. Some people rely on health services more than others, and people at a certain point in their lives certainly will.

Advances in information, knowledge, technology, treatments, earlier diagnosis and understanding of causal factors shape the environment in which we now operate. I believe we are not fully, or anywhere near, exploiting the opportunities and potential which all of these bring. There are still crazy situations where somebody almost uses a pigeon to take a letter from one place in the health services to somebody else. We are not exploiting simple things such as communications technology and the like. An improved health service will mean more people will survive birth, which is a good thing, but we must accept that there will be some babies and children with severe and complex needs. Let us face that fact and plan for it. In addition, as I mentioned already, people with such conditions will live longer. The complexity of health needs to be catered for will clearly also increase. These are issues we will have to accept as side effects of something that is good, which is more people being born and more people with disabilities being able to survive them and live longer, and confront that.

The future of health services must focus on, and invest strongly in, the areas of prevention, early intervention and amelioration, and the committee heard Senator Black speak about that in a particular context. If we do that, it can help to dampen further demand on health services. Getting in early and supporting people is the smart thing to do, even from an economic point of view. More generally, the current structures and delivery systems of services and the way society thinks about disability and chronic illnesses exacerbate rather than alleviate the associated problems. Our approach to how we plan services and think about things is dysfunctional and very unhelpful. Services must be remoulded so that every person, in so far as possible, is able to self-manage and have a sense of control over their condition and living circumstances. Health professionals must be better able to optimise working in partnership with people, their families, support networks and the groups that work with them. Primary and community care infrastructure is critical to all of this.

Beyond that, it must be recognised that the success of the health and care services in supporting and responding to disability and disabling conditions is significantly dependent on factors outside of the health service. That is one of the shifts in mindset that is required. Events outside of the health arena have a huge impact. I recall meeting a man 36 or 37 years ago, who I still know, who is physically disabled and in a wheelchair. He could not push himself around and did not have a motorised wheelchair. He went to a special school and graduated from there to a special workshop in the same organisation. I lost contact with him over a number of decades, but now he has a motorised wheelchair. He lives on the north side of Dublin. Dublin Bus and the bus stops became accessible. We take the use of public transport for granted, but that meant he could get from his home to any place around the city when and how he wished. He could get to his place of training. In fact, during that time he re-trained with the support of the organisation. He went to a college of further education that was accessible and near to him. There are a number of fortunate accidents here, and that is what we do not need because we must create the situation so this can happen. That man is now employed in that organisation. Little things, such a decent motorised wheelchair under his bum, an accessible public transport system and accessible spatial infrastructure, trebled and quadrupled the value of the supports he was receiving. That is what can be won here.

Accessible and available transport, including public transport, accessible public buildings and spaces, accessible information or information in accessible formats for people who are blind, deaf or have other conditions, good and appropriate housing, access to education, training and employment and sufficient income are equally as important as focusing on the health and care side. Both must be progressed if one wishes to maximise the results and returns. These areas must be planned for and improved in tandem with the health and personal social services. Every Department and public body has a role to play in creating the tapestry that will optimise the health and well-being of all of our people and maximise the participation of people with disabilities and disabling conditions. The health and well-being of all is a core matter for all of the Government, not solely for the Department of Health and the HSE. We can criticise the latter, and I am sure we will continue to do so, but it is and has been wrong to see all of the issues as being in the health area. The other aspects, such as education, training and access, are pieces of the jigsaw that have not been playing their part.

In conclusion, disability is not a sector in Ireland. We are all going in that direction and if we are not, our loved ones are. Nobody escapes this in one way or another. Consider it as making Ireland open to the broad spectrum of its people as they are and as they will be. It will be a very hopeful situation if we can do that. A small matter on which I have been working is the departmental strategy statements. It is important to get something into them, when they are being compiled under the new Ministers, related to this agenda of access for people with disabilities and disabling conditions. Every Department has something valuable to offer here. Rather than them saying they will see if they can do a special programme, the ambition must be to ensure that everybody can participate as they are, regardless of the shape they are in and their abilities.

There are three elements. What happens outside of the Department of Health is as important and in some ways more important, because that is where one gets the multipliers and the real outcomes for people to be able to live. People with disabilities, their families and support groups should be supported and encouraged to be more at the centre of managing, controlling and being on top of their lives. Third is prevention and early intervention. There is no doubt that when we started slapping people with penalty points and raised their insurance costs fewer people died, thankfully, and many other people did not become disabled, with their families caught up in that, who otherwise would have. That is because of something that was done somewhere else.