Once a manager with National Irish Bank, Michael McCormick has now inherited the challenge of overseeing the continued development, funding and restructuring of Down Syndrome Ireland, writes Áine Kerr
The creation of a national resource centre, which would provide support services and activities for people with Down syndrome, resources for teachers and respite for parents, is now billed as the ultimate priority for the organisation overseeing changes in the sector.
While a construction site has already been identified through Fingal County Council, questions remain regarding the funding and how an ambitious five-year plan to create a centre catering for independent learning, speech therapy, physiotherapy, counselling support and respite care will be realised.
When the Down Syndrome National Resource Centre is established, it will reflect the culmination of a gradual sea change in the perception, funding and understanding of Down syndrome, according to the chief executive of Down Syndrome Ireland, Michael McCormick.
As the first chief executive of the organisation to be a parent to a child with Down syndrome, McCormick has an innate sense of the varying challenges and frustrations that the 3,000 members of Down Syndrome Ireland can face when operating within a sector that remains under-resourced.
Compared with previous years when Ireland languished towards the bottom of the European scale for funding of Down syndrome, it is now positioned towards the top, having started from a low base and speedily channelled funding into the sector.
Compared to countries such as France and Germany, which concentrate on providing care and management for people with Down syndrome, the Irish system also seeks to develop people with Down syndrome educationally and socially and enable them to live independently.
Central to this process of providing for independent living are the daycare services and activities organised for people with Down syndrome.
"A lot of money is spent on these services but they are not demand driven and are instead supply driven. I would prefer to examine new models of providing services and provide for more competition . . . the services need to be more developmental as opposed to the standard activities of going bowling, shopping or to the pictures," said McCormick. Equally, job-support services could be improved.
No database exists detailing the number of people with Down syndrome in Ireland. Instead, the national organisation estimates that its 3,000 members account for only half of the persons with Down syndrome in the State.
These members and the public at large are the people to whom the organisation looks to for almost its entire funding.
The annual fundraising target of over €1 million propels McCormick to simply "hope and pray" on a year-to-year basis.
The Government provides funding that equates to 5 per cent of the annual budget and pays for a staff nurse who undertakes research. The organisation fundraises the remaining 95 per cent.
Alongside his five full-time staff, whom he insists create a "fountain of knowledge", McCormack is currently in discussions with the Department of Education in an effort to increase awareness of Down syndrome among educational experts and teachers.
Appointing someone within the department to specialise in the area is one possibility proposed by the organisation.
Turn to the Department of Health and the problems are varied and predictably surround the issue of resources and services in the absence of a set of standards. From county to county the time within which a child can receive speech therapy varies drastically, according to McCormack who contends there is a worldwide shortage in speech therapists.
"We approached the former Minister for Health, Micheál Martin, and told him that there was a shortage of speech therapists because there was only one college providing training. Now we have a number of universities and colleges offering courses and by the end of 2006 we will have 100 speech therapists coming out as opposed to 20 only a few years ago," he says.
Parallel to the increased training and expertise offered by the third-level sector, the organisation itself is working in collaboration with Trinity College on research concerning themes such as the pain threshold of people with Down syndrome.
"Very often they can't articulate the pain they experience, which then leads to secondary complications," says McCormack who contends that such research will be critical to the future care and understanding of people with Down syndrome.
Until 10 years ago, research into the condition was never perceived as of importance compared with today's "age of entitlement".
In 2009, Dublin and Down Syndrome Ireland will be host to the World Down Syndrome conference, and Irish practices, funding and structures will be held up for international scrutiny. How Ireland will compare internationally is yet unknown, but three years remain in which a suitable and lasting impression can be made.
"We will be starting to use our influence coming up to the general election . . . we expect to be treated fairly," says McCormick.