Disabled children pay heavy price as bank bondholders are paid

THE intangible thing that most defines all of our lives is power — our proximity to it and our possession, or lack, of it.

Originating from the Latin word potere, which can be translated as “to be able”, the root definition suggests power is an innate capacity contained within each one of us. The reality is that power is a very scare commodity.

Politicians, in particular, are obsessed with power — which, at its most basic, is the ability to get someone to do something that they would not ordinarily do — as it is only through its effective manipulation that their policies can be implemented.

In Ireland, the Government does not quell dissent or coerce acquiescence by posting gun-toting soldiers on streets, but instead uses a combination of economic threats and empty promises to try to keep an increasingly shell-shocked electorate pliant.

Bondholders in bust banks, like the moneybags in Anglo Irish who are set to receive €1bn at the end of this month, must be repaid on pain of the financial Armageddon that would sweep through the country if the Government was to dare to default; draconian austerity measures, which have been demonstrably shown to be wreaking havoc all over a eurozone on the verge of collapse, are necessary because of the scarifying economic sanctions that would be inflicted on the country if the Government was to renounce this failed ideology; and bankers, now running state banks after their gross ineptitude sank their private incarnations, must continue to be paid exorbitant salaries or else we’ll be lumbered with unidentified dummies who would, allegedly, fare even worse than those who have cost an impecunious State a €64bn bailout.

There is a cost associated with enacting all of these unpalatable measures and, inevitably, it is those with least power — the poor, the sick, the disabled, children, and the elderly — whose interests prove most expendable as the Government chooses the path of least resistance when flexing its muscle to impose its will.

Among those who are expected to sacrifice more are the parents of disabled children, whose main problem, apparently, is that they have too much respite care. According to a senior Government source quoted in the Irish Times last week, increasing pressure on public finances means the State can no longer continue to maintain funding to disability service providers, such as the HSE and voluntary groups, while also providing families with a €1,700 respite allowance.

The change is being touted as a progressive reform related to Government plans to provide individualised payments, to enable families to buy the support services they need — a claim that was immediately treated with scepticism by Inclusion Ireland.

“This is about giving choice to people with disabilities and their families,” remarked one upbeat Government source.

Perhaps the anonymous mole was referring to the kind of choices available to Frances Healy, a single mother from Co Limerick, who was forced to spend €1,000 to cover the walls of her home with soft padding because her 14-year-old son kept hitting his head off them.

According to a report in this newspaper: “Luke requires 24-hour supervision because he suffers from epilepsy, autism, attention deficit hyperactivity disorder, and asthma. He also suffers from a condition where he forces his hands down his throat, making himself vomit.”

Despite this litany of serious medical conditions, Limerick Co Council refused Ms Healy’s application for a disability grant, only deigning to meet the distraught mother after she was forced to go public and invite journalists into her home to see the make-shift padded rooms she had created in a desperate effort to protect her son.

While Government representatives attempt to spin the slashing of disability services as an eminently sensible policy, that will ultimately improve conditions for families of special needs children, the inconvenient truth is that funding for voluntary services has already been cut by 14% over the past four years, with the result that most are now at breaking point.

The Government’s cheery analysis about the reality of disability services also jars with the HSE’s own service plan for 2012, which states: “Some reductions in services will be unavoidable even with efficiencies. These will arise in day services, residential and respite services.”

These cuts, in just one region (Dublin Mid-Leinster), resulted in 535 nights of respite care being eliminated at the stroke of a pen this year.

Elsewhere, Laura Lynn House, the State’s only children’s hospice, which offers full-time palliative and 24-hour respite care to dying children, is facing the imminent threat of closure because it costs €2.37m a year to operate but only receives State funding of €800,000.

“These children are never going to be voters, most of them will never get to school, but they do exist,” said hospice chief executive Philomena Dunne, whose pleas have, thus far, fallen on deaf ears.

The refusal of the State to adequately fund the hospice doesn’t even make financial sense. According to a Trinity College professor, adequately funding homecare for terminally-ill children would save the State approximately €70m a year.

Speaking to Oireachtas members in April, Professor Charles Normand, a leading health economist, said €14.5m a year would allow children to be cared for at home instead of in acute hospitals, where care costs €87m.

They don’t feature in many current affairs debates, or discussions about the economy, but only 11% of the 350 children who die in Ireland every year do so at home — largely because there is no dedicated funding for homecare for children with life-limiting conditions.

THE €35m that has already been lavished on the consultation process for the new Children’s Hospital, whose location has yet to be determined after years of botched planning, would fund the Jack and Jill Foundation, which provides care for some of the most desperately ill children in the State, for nearly 20 years.

Meanwhile, the only national children’s hospital that we’ve actually got, Crumlin Children’s Hospital, has been forced to fundraise to try to collect €9m for a new cardiac unit and a refurbished cancer ward so that sick children and their families are afforded some level of dignity and comfort.

Medical professionals working on the frontline in Dickensian conditions, most aware of the needs of children today, can no longer, in good conscience, wait any longer for notional centres of excellence while continuing to watch children suffer on a daily basis.

Asked to comment on any of these issues and Government spokespeople will invariably remind us that the country is broke and offer the usual trite advice, to do more with less. However, when tasked with caring for dying children, or profoundly disabled children and adults, there is only so much that under-resourced organisations and families, no matter how financially prudent, can reasonably be expected to do.

The Government cannot continue to spin attacks on the most vulnerable in society as reform, in the hope that no one examines the impact of its plans too carefully, and its plaintive insistence of blaming its predecessor for unpopular decisions has long worn thin.