Despite the feel-good factor of hosting the 2003 Special Olympics World Games, 28,000 Irish people are still being poorly served, writes Nuala Haughey
The flame is here and the heat is on. Half a million spectators are expected to attend the 2003 Special Olympics World Games, which open a week today. Bus drivers have cancelled leave to shuttle people to and from 22 venues around Dublin, a spectator hotline has been set up to dispense information and 11,000 medals have been minted. Seven thousand athletes with intellectual disabilities from 155 countries will compete in an event that is as much about taking part as it is about winning. So let the countdown begin.
But wait a minute. What are those voices offstage saying? That Ireland doesn't deserve credit for hosting the world's largest sporting event this year when it treats so shabbily the people the Games are meant to celebrate. That it is hypocritical of our political leaders to soak up the goodwill and happy-clappy publicity surrounding the Games while, to our shame, up to 1,000 people who have intellectual disabilities but who are not mentally ill languish in psychiatric units or other unsuitable accommodation. That the pageant is inevitably soured when funding shortfalls have downgraded services for Ireland's 28,000 people with intellectual disabilities - and even prompted one Dublin centre to warn that it is on the brink of collapse.
The countdown was marred first by the SARS controversy and then by protests from groups enraged by the treatment of people who can't always speak for themselves, particularly in European Year of People with Disabilities.
Relatives of people with intellectual disabilities came from all over the country this week to stake a claim to a piece of pavement outside Leinster House, waving placards that read "Wake Up Call for Special Needs" and "2003 - Non Year of People with Disabilities". One particularly crudely crafted sign was inscribed in three shades of Day-Glo marker: "Will the Minister for Cutbacks be Taking His Place of Dishonour at the Special Olympics Opening Ceremony?"
The group managed to fit its protest between a Cork man on hunger strike, who is calling for a public inquiry into the death of his son in a nightclub, and taxi drivers protesting about the impact of deregulation on their earnings. To borrow the slogan of the Games, the demonstrators wanted to share the feeling with the powers-that-be, to shame them into meeting their demands. So there they all stood, lined up behind the crash barriers for a photocall and media- feeding session. They poured out story after sorry story to the milling journalists. They clamoured to share their feelings of frustration, stress and heartache at the inadequacy of the services for their children. Some even had the details of their struggles for dignity neatly typed on A4 pages.
They got their pictures in the paper, handed in a letter to Bertie Ahern and listened to him being grilled by opposition TDs in the Dáil chamber. And then they headed back to their homes, their children and their all-consuming battles for adequate services.
Among the crowd was Breda Kiely from Moyvane, outside Listowel in Co Kerry, whose 19-year-old son, Eoin, is one of scores of young adults with the mental ages of children who are quitting school this summer and, come September, may have no services because of funding shortages. Eoin, who has behavioural problems, including a tendency to have tantrums, should be graduating to an adult day service in the autumn, but there is no place locally for him. Kiely and her family are facing a summer of stress and anxiety. Will she or her husband be forced to quit their jobs to care for their son? Will his school allow him to stay on another year out of desperation? Will funding for a day service somehow materialise?
"I wouldn't be into the publicity thing at all," says Kiely. "I am driven only by the injustice of the situation. It's scandalous that politicians are depriving their own special-needs people while celebrating the Olympics. They have an awful cheek taking photo ops with those athletes while we are cutting back on our own disabled people. If I had my way there would be no politicians taking photographs with Special Olympics people."
The nearby St Mary of the Angels group is one of the main service providers in Co Kerry, with five centres offering day, residential and respite provision, mostly to people with severe intellectual disabilities. It is also struggling this year, with a €700,000 shortfall in funds from the health board, according to its chief executive, Sister Colm.
The group has been forced to scale back its respite care - a vital service for people with disabilities, as it allows their carers to have a break, especially at weekends. Nor will it be able to offer new places for school leavers this autumn. "We got funding way back, but it was catch-up provision, and what we really don't want is to go back to what it was a few years ago, when we really could only offer basic custodial care, like bathing and feeding people, with no programmes or therapies. That's really not acceptable," says Sister Colm.
It is little comfort to disability groups that this financial crisis comes hard on the heels of unprecedented rises in funding by the Department of Health and Children. Brian Cowen, as minister for health in those not so distant days of the Celtic Tiger, committed to a three-year programme of accelerated investment to clear the "backlog of need". Between 2000 and 2002 an extra €244 million was channelled into new residential, day and respite services, as well as being used to address some core shortcomings that were due to long-term underfunding.
This much needed injection was warmly greeted by groups such as NAMHI, a co-ordinating body for more than 160 organisations that support people with intellectual disabilities.
Significant progress was made. Between 2000 and 2002, more than 900 new residential places, 380 new respite places and 2,000 new day-service places were provided for people with intellectual disabilities and autism, according to the Department of Health and Children. But Fianna Fáil's election slogan sums it up: a lot done, more to do. Funding has receded from this high-water mark, and only €13.3 million in extra funding has been allocated for this year.
Exactly what remains to be done for people with intellectual disabilities is extremely hard to work out, due in no small part to the paucity of data. The National Intellectual Disability Database report for 2000 estimated that 1,711 full-time residential places and 861 day places would be required to meet the projected need for 2001 to 2005. But figures for 2001 and 2002, which would track progress and give a snapshot of the current position, are still not available.
The Department of Health and Children says preliminary information for 2001 indicates that "significant numbers" of people were still seeking residential services.
Disability groups accuse the authorities of suppressing data to avoid embarrassment. The Department rejects this, blaming one of the 11 health boards for holding things up by not submitting its figures on time.
A fuller picture will emerge by the end of the year. The 2001 figures should be available next week, those for 2002 later in the summer and those for 2003 by the end of the year. They are likely to show that despite the increase in services under the accelerated programme, waiting lists are growing, especially for residential services.
The situation is in part due to a baby boom in the 1960s, which means many people in their 30s remain in need of full-time residential care. In addition, greater life expectancy has led to increased use of services. So a three-year injection of funds is not enough. A lot done, more to do.
Annie Ryan remembers the bad old days. She knows we will never return to the era when mildly "mentally handicapped" children were sent to distant institutions, never to come back. As the mother of an adult son, Tom, who has autism, she has spent most of her life crusading for reform - partly through Walls Of Silence, her powerful and disturbing book about the neglect of patients in psychiatric hospitals. Ryan took part in this week's Dáil protest, alongside another well-known campaigning mother, Kathy Sinnott, who made history when she brought the State to court in a bid to secure an education for her adult autistic son, Jamie. "You always feel that if you get an increase in funding with this kind of action that perhaps you have pushed somebody else out of the way to get there," Ryan says about the protest.
Away from the din of the Dáil clamour for funding, disability groups are trying to revolutionise the way the State caters for people with intellectual disabilities, to escape the firefighting mode they are trapped in.
But what does all this talk about rights-based disabilities legislation mean? It means that a citizen with an intellectual disability who is entitled to an appropriate education or service could take the State to court if it fails in its duty to provide it. It is not a new concept, but it seems to instil fear in civil servants and politicians. People will stream down to the Four Courts to get judges to tell the executive what to do, they say, upsetting the separation of powers.
Ryan insists otherwise. There would be "no big deal" about these rights. It would mean people would have their needs assessed and services would be tailored accordingly. This, she and others maintain, would lead to better targeting of resources and improved structures. Surely, they say, it would be fairer than an ad-hoc system in which you might be lucky enough to get the service you need because you lobby the right TD or live in the right health board area.
Caught up in the midst of the battle for rights-based legislation is Willie O'Dea, the Minister of State for Justice, Equality and Law Reform. Enshrining rights in legislation would have implications for other Departments, he points out, including health, education and transport. "Everybody's particular need is their priority. We have a smaller cake to divide out, and that is the brutal reality. When the cake was bigger, we divided it."
And, for the record, O'Dea believes the Games should be a "politician-free zone".