The new Disability Bill does not give much hope to families like mine, writes Karen Canning.
How she cried tears of happiness
The day the doctor told her it's a boy.
Now she cries tears of helplessness
And thinks of all the things he can't enjoy
- From Scorn not his Simplicity by Phil Coulter.
My eldest son Kealan is aged 15. He's very attractive looking (and these are not the words of a doting mother, but of everyone who has ever met him). He is tall, weighs seven stone and wears dark blue thin-framed glasses for slight long-sightedness.
He is a very sociable young man and is at his happiest when he is surrounded by the people he loves. He should now be in Junior Cert year in secondary school but isn't.
Kealan has a severe intellectual disability. He has the mind of a 10-12-month-old baby, making him totally dependent on us for all his needs, i.e., dressing, feeding, washing and toileting.
When I eat my breakfast and dinner, I also have to spoon-feed my son.
When I get Kealan up out of bed in the morning all his bed linen has to be washed because he is doubly incontinent, and unfortunately the incontinence wear that is available was not made with a young man in mind.
Kealan cannot verbalise his hunger or thirst, so eats and drinks when others decide he should.
Each morning I drive him to his day service, which is provided by St Michael's House.
I know by his smile and excitement that he enjoys it and he is fond of all the staff but he has his favourites.
We are one of the lucky families because Kealan has half a residential place. Every Friday Kealan is brought from his day unit to a house (which is the first children's residential house in the St Michael's House area) and he returns every Monday back to his day unit.
But what if we need more time? What if something happened to us, his parents, where would he go?
There are many parents in this country caring for their disabled children who are in their 40s and 50s. What kind of life do they have? What kind of life can we hope for in the future? Does this Bill offer us hope?
The Disability Bill 2004 published yesterday does not really give much hope to families like ours.
As a member of the Disability Legislation Consultation Group, I was invited to attend the publication of the Bill where the Minister of State for Justice and Law Reform, Willie O'Dea, announced the Government's National Disability Strategy. This included the Disability Bill 2004, Comhairle (Amendment) Bill 2004, six outline sectoral plans, and a commitment to a multi-annual investment programme for disability support services.
The meeting was a rather sombre affair. The Minister outlined the Bill and then a few members of the audience asked questions.
It will take some time to go through the Bill and to understand what is in it but some of the general points are:
Liaison officer: this will be a one-stop shop for families to go to for information. Up to now families didn't know where to go to and were sent from pillar to post before they got the correct information. While this is a good idea, the liaison officer does not have to include the family in his decision-making. This is wrong and hopefully will be corrected.
No funding: while a five-year multi-annual funding plan was announced, we do not know how much is involved and the Minister said this would be announced during the Government Estimates and the Budget. Will this funding eradicate the waiting lists for residential, day, inappropriate placements and respite places? Or will these lists continue to grow?
Is it fair that, while our non-disabled children can grow up, go to the local school, make friends in their own neighbourhood, go to college, get a job and own a house, our disabled children, with the current lack of Government investment in disability supports, cannot?
Sectoral plans: at regular meetings we were informed that the sectoral plans would be published with the Bill. But yesterday we were given drafts of these plans. Sectoral plans are services from six Government Departments, which will support people with disabilities. They are: Departments of Social and Family Affairs; Health and Children; Enterprise, Trade and Employment; Communications, Marine and Natural Resources; Environment, Heritage and Local Government; and Transport.
Right to an assessment of needs: while our children now have the right to an assessment, they do not have the right to a service that would follow on from that assessment. If a child is assessed as having a disability, a statement of service will be drawn up provided there are no resource constraints. If there is no speech therapist employed by the service provider, through lack of resources or availability, speech therapy will not be part of the statement of service. If speech therapy was included, the child would be entitled to that service and this entitlement could be enforced. Peter Bacon in his report stated that it would take until 2015 to have enough clinicians employed, so how does the Minister expect to have these therapists on stream by 2009?
This Disability Bill is an Assessment Bill and, while our family members have the right to an assessment, we now know what it is our family members might not get.
Karen Canning is PRO of the National Parents' and Siblings' Alliance