The Celtic Tiger—Ireland—has the Disability Act of 2005, a demanding building law and two anti-discrimination laws. However, as yet there is no legislation for personal assistance, though various organizations arrange services without government involvement.
David Egan, who is visiting Stockholm for ILI’s conference in celebration of 25 years of Independent Living in Sweden, lives in Athlone in central Ireland with his wife Antoinette, whom he met when he was in his 20s. They have no children. “I’m the child,” laughs David. He has studied art history and acquired computer skills early on. His interest in art brought him into contact with antiques and for a few years he specialized in eighteenth century furniture. “But my disability made it difficult to manage all the transports,” says David. “Though you Swedes also ruined the market with your IKEA,” he says with a twinkle in his eye.
David Egan was a rugby player in his youth, and at age 28 he became paralyzed while playing this rough sport. But he continued with rugby in various ways, including as a club steward for the Buccaneers, where a completely accessible (locker rooms, etc.) rugby stadium was built. David also spent a decade as editor-in-chief of SpokeOut, Ireland’s first lifestyle magazine with personal narratives about disabilities, including articles about travel.
David has one hour of personal assistance in the morning. “I want to be as independent as I can,” he says. But as an active participant in many organizations for people with disabilities, and even in Independent Living in Ireland for some years, he has quite a few opinions about personal assistance. He also does his own research on assistance in Northern Ireland and Sweden. “We want to take the best of the British and Swedish models and then set our own goals,” says David.
He feels that the British system with cash support is good, but the compensation is not enough for the user to be able to engage good agencies. “Then you don’t have freedom of choice.”
“Sweden is our benchmark. We quote Swedish laws for our government and use it as the best example of personal assistance.” But at the same time he is concerned about what he sees as the current attack on personal assistance in Sweden. “We have to set a standard in Europe.” He also compares the situation with other European models to see what works best and use it as the goal to which all countries should adapt.
In Ireland almost € 900 million from the Health Service Executive, which falls under the Department of Health, reaches various personal assistance agencies each year. David calls this the service provider model and according to what Mary Keogh writes in the 2007 International Disability Rights Monitor, the industry lacks procurement processes, contracts, quality criteria or audits.
The largest assistance agency is the Irish Wheelchair Association Assisted Living Service, which in 2007 provided almost one million assistance hours to 1,444 people in 26 districts. Either the user controls this assistance and reports to a coordinator, or both the user and the assistant submit reports. The 24 Centres for Independent Living (CIL) in Ireland also arrange for assistance to varying degrees. The CILs arrange about a half million assistance hours annually. The CIL offices do the hiring, while the user serves as “line manager" with a more comprehensive and ideological responsibility.
The service provider model has worked fairly well in Ireland, according to David. Criteria for number of hours are determined locally without national criteria. It is possible to get a large number of hours, though of course not everyone is satisfied. Nor are wealth and income considered in today’s system, which is why many wish to avoid rocking the boat and questioning the current system.
Nevertheless, David leans toward feeling that a change would be useful, especially because people with disabilities would have greater responsibility, which means they would gain more autonomy in their lives. “We have to grow up. Today’s system doesn’t allow users to learn. The agencies recruit and hire, pay tax and handle employee policies. And there isn’t much choice. A given area may have only one agency.” User control should be the rule and not the exception, according to David. The current model, which he calls a “social welfare model”, with little individual responsibility, has led to a type of dependence culture that is in conflict with the idea of personal responsibility.
“Learning to manage assistance breaks many barriers; people can begin to recognize their ability to work and see the big picture.”
David Egan is currently working with the question of training for both assistance users and assistants. Unfortunately users often have little knowledge about the labor market. And assistants must know about the philosophy and be able to distinguish between friendship and assistance, according to David.
It is important for the occupation to have status, which is precisely why a high cash subsidy is important. Low compensation provides minimum service and a “race to the bottom,” according to David. The result is low wages, uneducated assistants and poor quality at work. The money must also be enough to cover the cost of personal choice. The direct cash subsidy will guarantee freedom of choice and control. “Users have to be able to choose a cooperative, a company or to hire on their own.”
David Egan feels that a national policy, based on a good law, is needed for the future. Assistance in Ireland in the future must be based on the users and not the agencies. The law may become effective in 2010, but users must now become better at promoting good legislation, according to David. And this requires somewhat more collective structures. “IL in Ireland should have a common voice, a collective representative. The government does not intend to talk to 24 different local CILs.”
David Egan was interviewed by Emil Erdtman on November 29, 2008