There is an oft repeated mantra that a society should be judged on how it treats its most vulnerable members. And that is right and proper; it doesn’t say much for the notion of living in a civilised society if it is one derived from the notion dog eat dog, of everyone for themselves.
Yet, in Ireland, over the course of the last few years, as the economic climate as worsened, there has been a rush by all sorts of groups to include themselves in the definition of Ireland’s most vulnerable, from millionaire pensioners who need medical cards to the children of the well off in 3rd level who simply can’t afford pay fees for their education to everyone who works in the public sector from the secretaries of departments and the heads of our semi-state companies to the CEOs of various state funded service delivery organisations such as REHAB on six figure salaries. I, for one, do not regard such groups as being amongst the most vulnerable in our society. And I’m not inclined to listen to the pleas of the well off who can afford professional lobby groups as they demand access to places in the lifeboats ahead of others who are genuinely more deserving.
I am a member of Fine Gael who is just about able to remember the discussion within the party that lead on from the publication of the Just Society document in the 1960s and the culture shift within the party resulting from which was a central reason that shaped my later involvement. I am firmly of the belief that can be no second-class citizens in a genuine republic. Nor can there be super citizens, people who have special rights and privileges accorded to them by virtue of their membership of particular groups or professions. No one is above the law as Steven Seagal might put it.
Public policy should be created on the principle of being inclusive of everyone while being designed towards helping disadvantaged members of society to survive and thrive, to flourish and reach their potential; it does not need to create some overarching and separate bureaucratic ghetto in order to do this.
As a society we can show our innate generosity by providing the resources and services that people with special needs and their families require in order for them to live as fully as is possible as members of our society. My sister has an intellectual disability but I do not for a moment think that this makes me an expert in all the various circumstances that exist for all those with special needs. It merely provides me with some small measure of a leg up in the area. I have learned much from my mother’s knee and at her side in her fighting with the various state agencies in ensuring that the services to which my sister was entitled were actually available and accessible to her. Far too often in the 1970s and 1980s the level of service delivery did not remotely come close to that which many people thought was meant to be there. I would start in the Seanad, if elected, by listening to those that know more than I do and then by acting as a strong advocate based on their advice but also with an eye to ensuring that what we are doing is designed to be as self sustaining as possible.
I favour an approach based on the exercise of as much personal choice as possible and using portable vouchers, direct payment and personal budgets to support this. The aim is to free people with disabilities from being dependent on what is doled out to them by the state or any substituted private sector monopolistic entity. Too much of the current model from the state’s perspective is geared around placing most of the control in the service provider rather than the individual who is in receipt of the service. In Ireland in contrast to many other countries, much of the frontline provision of day to day services to those with disabilities has been grown from the ground up by parents, friends and extended families in local community settings in parallel with work done by the religious. So, in part, much of the structures and understanding necessary that the service should fit the person rather than the person fit the service is already there. What is needed is to ensure that the state provision and backup side of this is in tune with the frontline. Each person with a disability, just as with everyone else, has their own individual needs and circumstances that are particular to them. They should be the focus of the service they use.
For those that wish to participate in mainstream education the supports should be there to do so, for those that do not it should not be forced upon them. I support the rights based approach for ensuring the availability of services to those with a disability. I do have a slight concern that in the initial years after such an approach is adopted that some members of the legal profession might see the gap between the actual service being provided and that which is supposed to be there as representing the chance of a quick buck. This could mean that the money that should go into setting up and providing services will instead be taken up with legal challenges as to why they are not already in place. This is not a reason not to proceed with a rights based approach merely to sound a warning that we should be aware of the possibility.
Funding Independent Living
In 2007 I attempted without any great success to highlight the problems associated with applying the notion that having a disability was somehow similar to being elderly. In particular this related to the Health (Charges For In-Patient Services) Regulations, 2005 S.I. No. 276/2005. This was introduced, by Minister Mary Harney, in order to allow the state to recoup some of the costs associated with long stay care from elderly people who were living in nursing homes as they came to the end of the lives. This came about in response to the realisation that the charging of elderly people and those with disability for long stay care was in fact illegal as they had been entitled to such care for free all along.
What prompted me to highlight this was the signalling of attempts to implement the Health (Charges For In-Patient Services) Regulations, 2005 S.I. No. 276/2005 to apply it also to adults with disabilities who were living with varying degrees of independence in residential settings in our community.
It was my belief then and it remains so today that adults with disabilities are living in an entirely different situation to elderly people and to use the same provisions for both is wholly wrong. Why do I think this? Firstly, the measures seeks to recoup up to €90 of then €185 from the person living in a support setting, but without implementing a system that would ensure what quality of service they would be provided with. The extension of the HIQA inspectorate to this sector will come long after the inspection of nursing homes, but the implementation of the structures for the recouping of monies will proceed in parallel. While the HSE has been quick off the mark to seek to recoup monies from those with disabilities they have been much less so in seeking to ensure the quality of care, by not including these residential care facilities in the nursing inspectorate HIQA. Now I don’t see a problem per se in someone with a disability making their contribution to the expenses that you or I would incur when living independently, food and such like. You can get more information here.
Carl O’Brien of the Irish Times had a series of excellent articles in Feb of 2010 highlighting many of the problems in this area and I include a couple of quotes below as the articles are behind the IT firewall.
“At least 8,000 adults and 400 children are residing in institutions or care homes for people with intellectual disabilities which are not subject to State inspections or care regulations”
“INTELLECTUALLY disabled people are at a higher risk of abuse than almost any other category of person. They are far from family. They may not understand what’s happening to them. Even if a family member suspects something, many fear retribution or losing a residential placement.”
“HEALTH AUTHORITIES are investigating hundreds of complaints of mistreatment, abuse or lapses in care for people with disabilities in residential settings.
More than 500 complaints have been made over the past 2½ years, according to records seen by The Irish Times.“
“ABOUT 4,200 people with intellectual disabilities are living in outdated institutions or group homes which need to be closed down or replaced, a report commissioned for the Health Service Executive (HSE) is expected to conclude.” And others.
I would be inclined to simply say that they are self evidently in different situations but here are some practical differences in circumstances. However, for those that need some straightforward sample of the differences that mean we should not treat the elderly and those with disabilities in the same way.
Most elderly people have had some opportunity to build up a financial and living nest egg, they will have savings and clothes and many personal items from long before they start to live in nursing homes. They will live only their final years in such a setting.
That is not the situation that someone with a disability would find themselves in, they could easily start to live in a shared house at some point in their 20s. In this house or somewhere similar they will continue to live for the rest of their lives, that hopefully being many decades. Most will not have the opportunity to build up savings or have some extra income as work opportunities are very limited. So they have no nest egg or ease with which to populate their lives with the every day items most of us take for granted.
Those with disabilities start with little or no savings and will spend the majority of their lives in these settings while the elderly start with savings and will spend a minority of their lives there.