Disabled people’s rights - State has duty to help all its citizens

YESTERDAY’S landmark High Court settlement, making a regional health board responsible for providing a profoundly disabled nine-year-old boy with the support he needs to live at home with his mother, will be applauded by families of disabled people from one end of the country to the other.

It is a decision that will have profound implications for other families who for years have been denied this kind of help by the State.

Significantly, the development comes at a time when those representing disabled people are fighting an uphill battle for rights-based legislation to be introduced, something the Government is stubbornly resisting.

While the settlement negotiated between the Southern Health Board and lawyers for Darren Woods and his mother, Tessa, was agreed out of court, there is no denying it will have far-reaching implications for other parents trapped in endless legal battles against the State.

The first decision of its kind in this country, the outcome will ensure that Darren, who was born with Spina Bifida and hydrocephalus, leading to intractable epilepsy resulting in up to 150 seizures a day, will in future get 50 hours of homecare assistance every week.

The incredible relief this means to his mother can hardly be visualised by parents fortunate enough to be blessed with normal, healthy children. The exhausting burden of having to care round the clock for a severely disabled child is unimaginable.

Tessa Woods can rightly take her place in a long line of courageous women who have had to battle fearlessly against the odds in order to secure the care their children desperately needed.

For the Woods family it means that Darren will be able to enjoy as normal a family life as possible in his own home. The travesty is that they, and a long litany of other families, have been forced to resort to the courts to secure their rights. Almost without exception, parents have been driven to fight on behalf of their children because obstacles were put in their way by successive governments and State agencies.

It was clear, for instance, that the level of support available from the Southern Health Board was inadequate and variable. As a result, Ms Woods’s own health came under severe strain and, but for the emergency respite care provided by the Cope Foundation, their lives would have been utterly impossible.

It is typical of such cases that the proceedings which culminated yesterday have dragged on since being set in train five years ago.

It is impossible to over-state the importance of Cope’s intervention for the Woods family. It was in keeping with its unstinting service to generations of disabled people across Munster who for decades have been helped by Cope to live relatively normal lives.

However, it is inexcusable of the Government to use the unselfish work of voluntary organisations to evade its responsibility to cherish all the children of the State equally. The rights of disabled people must be based on citizenship not privilege.