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Column: 'The HSE think they're too big to fight, but I won't be silenced'

Jack and Jill’s CEO Jonathan Irwin says he won’t go away until the domiciliary care allowance crisis is sorted out.

Jonathan Irwin

Ahead of the tonight’s debate on the Private Members Motion in Dáil Éireann on Domiciliary Care Allowance (DCA) cuts, Jonathan Irwin, the CEO of the Jack and Jill Foundation, discusses the impact DCA delays are having on parents of severely ill children.

IT REALLY SADDENS and angers me to see this debate about the domiciliary care allowance (DCA) continuing today.

I know from our nurses who are based in every community in Ireland that the 294 families under our wing, who have babies with severe developmental delay as a result of brain damage, have been adversely affected by delays of up to eight months in their applications for domiciliary care allowance. And furthermore the granting of carer’s allowance is intertwined with this payment of DCA.

‘Parents are being attacked in a very underhanded way’

This is a matter close to my heart. When my son Jack Irwin was born in February 1996 there was no domiciliary care allowance until the child reached the age of two.  Why?  Because civil servants expected that children like Jack would not survive beyond two years old. Shocking but true.

After much debate with the then Minister for Health Brian Cowen and with the help of Charlie McCreevy we had a breakthrough and the DCA for children from diagnosis was introduced between 1996 and 1997.

After achieving that victory I find it quite shocking that 14 years later these parents are being attacked in a very underhanded way. It is taking six to eight months for them to answer applications – almost pushing it out to the two-year mark again. As a society we’re going backwards when it comes to the health care of the most vulnerable in society.

‘That’s just bureaucracy gone mad and totally unfair’

The HSE is randomly selecting names out of a hat and writing to tell parents that their payment and their child’s situation is up for review. This is shocking to me as the HSE know that the children under Jack & Jill care will not get better. These children are so fragile, they are never going to improve. What’s really appalling is that for some of our families, as soon as they get that letter stating their DCA is being reviewed, that same DCA payment is stopped throughout the whole review process.  That’s just bureaucracy gone mad and totally unfair.

They are effectively treating the parents of severely disabled children with contempt and making life much more miserable for them. It is done to save their budget – but it really is the most vindictive attack on very vulnerable families.

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This state is totally ill at ease with primary care for sick children. The economic model for caring for sick children at home is a ‘no brainer’ a phrase repeated again and again when we met 40 TDs and Senators on April 19 in Leinster House to urge them to do something about the fact that Ireland doesn’t have a national paediatric home nursing care budget.  The Trinity report No  Place Like Home from 2010 proved that it is nine times less expensive to care for a child at home at €16,422 per annum, compared to €147,365 for hospital care.  But what do we have in Ireland today?  Delays, cuts and incompetence from the HSE at the top.

‘The HSE think they are too big to fight against’

The review is itself vindictive and unkind. The HSE is very well funded. We all naively think that when we are sick or our parents or children are sick that they are the agency that are going to try to do their very best to help us through – but they seem to actually be the agency that drive you over the cliff. The HSE think they are too big to fight against. I have raised the issue with government and there has been a resounding silence. But we won’t go away. I am no longer a father of a little boy who cries for 24 hours a day -  I am now one of the voices that won’t be quietened, and I am one of the voices that won’t go away until this DCA crisis is sorted out.

Jack & Jill has 294 babies under our wing today, so that is 294 families that are totally reliant on us. Individually they probably don’t have the strength to fight, or even the strength to ring their own TD – but they empower me to represent them, and I will go on to fight for them.

Jonathan Irwin is the CEO of the Jack and Jill Children’s Foundation, which provides respite care for the families of children with brain damage. You can visit their Facebook page here.

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