FRANK CONATY,
Madam, - As I write this letter my son Matthew is lying on the floor beside me. Matthew is nine and severely disabled, intellectually and physically.
He requires 24-hour care; he cannot walk, talk or swallow. He has to be connected to a feeding system 14 hours a day. He is doubly incontinent. Matthew has the most wonderful smile of any person I know. When you look into his eyes you experience something that is pure and 100 per cent genuine.
Matthew is cared for at home with his family. His school gives us wonderful support and provides him with a great environment, despite limited resources. We also receive one weekend respite a month, a vital support to us as a family. Sometimes we feel guilty because so many people do not have these basic services.
We have all heard of the massive increase in spending in the area of disability over the past five years or so, and indeed there have been terrific improvements. Why then do we despair? Simply because we will grow old and so will Matthew.
Mostly we do not allow ourselves to think about this and live instead for the moment because the future is a desperate place. We despair because places like St Mary's of Drumcar are so inadequately resourced. There is a place in our town where 16 adults with intellectual disabilities must live in accommodation built for children, confined, with little or no occupational intervention.
Over the past few years we have been told by many a politician that this will be put right. Alas, it appears our poor nation has insufficient resources. Where will Matthew go when we get too old to care for him?
Children with disabilities will always be born. Why, then, does our society have such mind-blowing difficulty in providing adequate care for these people - our families, our neighbours and friends?
Ireland is relatively wealthy. It is simply a matter of the priorities set by our elected representatives. We are tired people but we cannot afford to be weak; our children and families depend on that and it seems to me that our politicians exploit it. This year there is little or no emergency funding to service providers and any additional funding for service introduction or upgrading has been massively reduced.
I am an accountant and my discipline trains me to look for the underlying assumptions governing defined courses of action. The present policy assumes assumes that existing services are adequate despite years of under-investment, that no new children will be born with disabilities and that medical advances that have reduced mortality rates will reverse, or that such investment does not add anything to society. Which do you think is right?
If this is really to be a "European Year for People with Disabilities", and not another year of despair, we need to re-think how we want to spend our State resources.
As an optimist, I believe that if people really knew what was happening things would change. I would dearly love to be proven right. - Yours, etc.,
FRANK CONATY,
Chairperson,
Galway Alliance of
Parents and Carers,
Kilcolgan,
Co Galway.
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Madam, - As a parent of a person with an intellectual disability and as honorary president of the National Association of People with Disabilities (NAMHI), I found the remarks of the Taoiseach outside the launch of the European Year of People with Disabilities at the Mansion House last Tuesday very hurtful.
He spoke of "a small crowd made up of four organisations" while our members were protesting to highlight the very grave fears about the lack of funds allocated in Budget 2003 to for people with intellectual disabilities. It might have been a small number of parents from all over the country, but for every parent outside the Mansion House there were many parents who were not able to attend the protest because they had to look after their intellectually disabled child.
NAMHI is a national representative group of over 160 organisations providing support to almost 28,000 people with intellectual disability in Ireland. The other groups, the National Siblings and Siblings Alliance, the Irish Autism Alliance, and the National Federation of Voluntary Bodies are also national representative groups.
The protest was very dignified. The majority of those taking part were elderly parents, many of whom left home at four o'clockthat morning to attend the protest. It it was never our intention to have a large group of people outside the Mansion House as we did not want to detract from the launch of the European Year of People with Disabilities.
As Taoiseach, Mr Ahern should have shown a little respect for us as parents of people with disabilities who cared enough to go out in the pouring rain and protest just to get essential services for our children.- Yours, etc.,
JEAN SPAIN,
Honorary President,
NAMHI,
Grange Park Green,
Raheny,
Dublin 5.