E mma Rogan will never forget the day she was diagnosed with multiple sclerosis (MS) at the age of 27 – her symptoms were being caused by scars affecting her central nervous system, she was told, there was no known cause, there was no cure and it was a degenerative life-long condition.
Rogan walked out of the hospital on May 14th, 2007, with all her expectations of life shattered.
“They unleash this absolute trauma upon you and you don’t know where to go with it,” she says. As she struggled to make sense of her condition, she heard about her local, voluntary branch of MS Ireland in Mullingar, Co Westmeath.
“Those people were fantastic,” she says simply. She was put in touch with MS Ireland community worker Mary Leonard, who “held me up for the briefest of moments and helped me see that, despite the darkness that had engulfed me, there was some light in the days ahead”.
Rogan was one of the speakers at last month's launch of Living in the Community: Services and Supports for People with Disabilities. It was commissioned by the Disability Federation of Ireland (DFI) and the Not for Profit Business Association to highlight the work of voluntary organisations which, they say, was ignored by the Government's Value for Money and Policy Review of Disability Services.
The irony, says DFI chief executive John Dolan, is that the policy context for the Government report was people with disabilities living in the community and being autonomous, yet it focused on the older generation of services that are based around residential and day-care places. And, within weeks of that report’s publication last July, the Government announced cuts to the personal assistance programme and the home supports – “they were two of the areas they didn’t choose to look at”.
He believes the Value for Money report was preoccupied with making savings, whereas what's important, he argues, is getting value for the public spend.
Many of the country’s estimated 217 non-profit disability providers exemplify the “person-centred” approach, to which State services are now supposed to aspire. They act as a “bridge”, linking people to required services as well as providing emotional and peer support.
The Living in the Community study took an in-depth look at 15 voluntary disability organisations, supporting more than 60,000 people, to investigate the scope and quality of community-based supports and services. It also addressed the question of "value for money".
In its findings, the report singles out four intrinsic features that make these a vital community resource: they are naturally person-centred; they have specialist knowledge and skills; they can innovate and adapt to change; and they have forged strong connections both within communities and beyond.
Some of the ways in which significant value for money is regularly achieved are not currently registered in health service accounting systems, the independent researchers, Lisa Costello and Wendy Cox, point out. They found many examples of how services and supports provided by voluntary organisations have saved significant amounts of taxpayers’ money while, at the same time, benefiting their clients. For instance, people have been supported to live independently rather than having to resort to nursing home or hospital care at a much higher cost to the State.
The report recommends that reform of the Health Service Executive’s Disability Services Programme should “take full account of the role of voluntary organisations, and should propose ways in which they can be adequately supported to provide and extend the community-based services which are at the heart of current disability policy”.
At the launch of Living in the Community, the Minister of State with responsibility for Disability, Equality, Mental Health and Older People, Kathleen Lynch, said that the Value for Money review showed people wanted more flexible services that met their individual needs. She acknowledged that there were agencies that had developed from a community base, which promoted client choice and independence, and were providing extremely valuable services "long before the review was published".
Much of the success of supported living in the community has become so embedded into the way people with disabilities live, it is almost invisible and that is the way it should be, says Des Kenny, chairman of the Not for Profit Business Association. When people are looking at new systems or approaches for people with intellectual disabilities coming out of bigger residential care, they really don’t have to reinvent the wheel.
Dolan stresses that it is not all about “hard” services. “It is also about the people who can give you comfort, consolation and hope and that sense there are ways around things and there are people with you.”
This is what Rogan found in MS Ireland, as she re-evaluated her life and went to UCD to do a Masters in Equality Studies. She formed a support group for other young people with MS and last year was one of the winners of Vodafone's World of Difference Programme, with the prize being a year's salary working for the charity of her choice. No prizes for guessing which one she chose.
For more, see disability-federation.ie;
notforprofit.ie; ms-society.ie.
