Has there really been no progress in treatment of those with a disability?

Tom Clonan writes with passion and directness about the challenges his son and his family face yet his central premise that it is the state that has disabled his son is one that cannot go unchallenged. There are clearly instances where those working for state or state funded agencies have caused the disabilities of some people, most often during childbirth, yet that is not what is being written about here. He writes that the insufficiency of supports is solely why his son is disabled, that the state has labelled him as such and placed him in his situation. It may seem cold to say this but that is not true. It needs to be said that it’s not true if we’re to have a debate about how we fund and provide proper resources to those who have disabilities so that they can live as full a life as possible.

The state and Irish society can and should do more to assist those with disabilities. It has done so, significantly moreso over the last number of decades. It was to his credit that as minister for Finance that Brian Cowen made increasing spending for disability a focus in his early budgets. This followed on from a number of decades where the funding and range and availability of services had been transformed, from a point in the late 60s/early 70s where the likely outcome was either languishing at home depending almost exclusively on your family or living out your live in some large state institution day after day, the situation in the early 00s was much, much improved. Still not where it should be but still enormously changed. There was a recognition that there was still a considerable distance to travel but it was a broad societal commitment to do so. Something that wasn’t as widespread a generation before.

There are reasonable points to be made about whether those resources were most effectively utlised but increased resources were provided. We have as a society and through the state as our agent recognised and changed the approach to those with disabilities of all types, the resources available have increased. The numbers being provided with a service have increased. Longevity, living in and participating in the community has all increased. People have been able to access more and more services closer to home. I’ve seen that first hand with my own sister who initially had to be placed nearly 300km away from us cos that was all that was available and who over the course of time – a bit over a decade -, and yes lots of pushing, lobbying and chasing, progressively was able to get services closer to home. That’s the changes that have happened, and are still happening. Too slowly, yes.

Yes, there has been a retrenchment during the period of the recession and it’s not a choice I’d personally have made. Yet I see and have seen no alternatives put forward by those who would have continued to increase spending of what other spending they would chosen to reduce and what taxes they would have increased for themselves to fund that spending. Personally, I’d have argued to reduce salaries over the average industry wage for those in the public sector sufficient to cover the necessary resources. I’d have supported and still do charging people who use water for the provision of that service to free up resources for other areas such as disability services. Of course, I’d never have been elected if I’d suggested that.

Services for those with disability tend to be highly specialised and labour intensive and you can’t reasonably expect to provide either on the cheap in the long term. Many of the services being provided now were once provided by volunteers. Service providers who were staffed by the religious orders and others who were not paid very well and who while well meaning were not always that well trained, if trained at all, have been replaced by both public and private sector services with better pay and conditions and considerably higher expectations of training. That has all required considerable increases in funding from the state. The costs per person can easily run into six figures per year, that can easily be the entire tax take for dozen or more people. I believe that it is entirely reasonable that a proper and just society would underwrite those costs, yet I’m also conscious that it’s not the only sector requiring funding and that the case has to be repeatedly made to the public at large as to why their money needs to be spent in this area and when necessary why it needs even more of their money.

However, it is a complete disservice to those working in the sector to claim that they and the system they work for is what is disabling his son. To those who fund the state services and those working in them to straight out say that they’re at fault for someone’s disability is incredibly dismissive of their efforts. Nobody working in this area nor no one seeking election is going to win friends by pointing improvements, you get elected by highlighting what’s still wrong, what there is yet to do, not by calling out progress made.

There are still many problems with the way in which spending is controlled, with who gets to make the decisions – it being too much the state agency rather than the individual who decides what service they should get -, the siting of services, the availability of services outside of 9-5 mode, the timely assessment of people for services, the continuity of staff, the supports for families and carers and the long term funding for the individual so that we remove the disconnect and disjointed transition from the services available to someone under 18 and those deemed to be adults. the list is long and grows every year. The approach being taken needs to be constantly reviewed and revised, yet if it is not possible to acknowledge that any progress that has been made up to now with the increased resources how can we justify further increases?

Tom’s article is clearly driven by frustrations and probable exhaustion which would be recognisable to anyone who has cared for someone with a disability. That can explain but it really shouldn’t excuse the rewriting of history and conflation of individual situations into a systemic abandonment. There is peculiar reference in his piece to his son not being capable of being a God in ancient times that is supposedly meant to negatively compare modern attitudes to those with disabilities to those of yore. I’m not sure what age Tom Clonan is but attitudes now are light years ahead of what they were in the long ago. It’s not the modern world that would have deemed his son unable to be a God; it would have been our ancestors. Tom writes about an incident with Aer Lingus that reflects more the failure of individuals to do their job properly rather than any systemic failure of the state. He writes of the need to contact a station a day in advance to ensure there is a ramp available to ensure access, I agree that’s too restrictive. What is Tom Clonan’s proposed solution?

Tom has stood for election to the Seanad in 2016. At the time he made little if any reference that can be found as to what taxes he would have increased to provide more resources or what other areas of spending he would reduce or eliminate to free up additional resources for the disability sector. There are many people and groups that advocate for more resources, that is as it should be. Yet if it is assumed by almost all concerned that providing those resources is simply a matter of asking strongly enough and they will be released from whatever vault they are being kept in then we’re not going to change the minds of the electorate from whom those resources need to come. We need to move away from the current model of funding that looks at supports for those with disabilities as being part of the health agenda. It’s not. Most health considerations are for the prevention and treatment of diseases and conditions that are “correctable” or “fixable” whether in the short, medium or longer term. There is a view that at some stage in the future their treatment can hopefully end, that they can exist the system. Almost of those with a disability will have for their entire lives, theirs are not needs to be treated, completed and discharged. While there is some overlap with those with chronic conditions, it is reasonable to look at taking management of this sector away from the Dept of Health into a new structure that may well be a client to use health services to provide specific supports but which is managed independently and funded differently. I don’t have the complete picture to answer to how all that should be done but it’s a debate we need to have.

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