VICTORIA WHITE: Doors stay shut on homes where work of caring goes on in secret

All this politically correct blather about “care in the community” means, in practice, that families are left to cope as best they can in private, writes Victoria White

The Respite Care Grant doesn’t entitle you to respite care. It’s a bit like the Water Conservation Grant which may not help you save water. You might as well call it the “I’m sorry for your trouble” grant.

The €1,700 grant, which was restored to its full value in Tuesday’s Budget, having been savagely chopped by €325 three years ago, is desperately needed by many of us who care for disabled people because we lack services. But it would not go far in paying for respite services in difficult cases. And in some places for some people, the services simply do not exist.

Respite – a break from the daily grind of caring for a disabled person – is not available for people with particular disabilities in many parts of the country. Even the Citizens’ Information website can’t dress it up: “In practice, respite care is provided to a varying degree at a number of locations around the country – in some cases by your local Health Service Executive Area and in others by local or national voluntary organisations.” You might get it and you might not get it. Heigh-ho. Life is a merry-go-round!

A HSE/NUIG research project in 2007 which was funded by the Daisychain Foundation found that of the 25,000-odd people on the National Intellectual Disability Database, only 19% were accessing respite services.

This doesn’t surprise me. I spoke this week to the mother of a 13-year-old boy on the autistic spectrum with a moderate learning disability. In those 13 years she and her husband have had one break away from home and that was eight years ago when the HSE funded a carer to come into their home for a weekend.

The HSE currently funds 20 hours of social care every week for the family because the ASD kid is violent and the family is on the verge of breaking apart. The other two children can’t do their homework when their brother is in the house. One of them had to go to play-therapy sessions because he had never learned to play on the floor. It was too dangerous.

The Respite Care Grant wouldn’t pay for two weeks of this intervention which comes in at over €50 an hour. These are the hard cases that, as this mother says, “No one wants to talk about.” On the other hand, the people who are well resourced with respite care because they live in the well-resourced place with a well-resourced disability and are, perhaps, better connected, get the same grant as people who get no care. Is that either fair or strategic?

The payment of the grant masks the fact that there is no respite strategy in this county. It might pay for respite if you can access it and it might not if you can’t. Most families with a disabled member are financially stretched and many need the money for the basics.

I know I have difficulty justifying any money I spend on breaks for myself from the care of my ASD son and only do so when I’m sure it’s benefitting him as much as me. And the thing is, it does. The one break we have got so far was in Easter 2013 when Tom, then 12-years-old, was brought to Lourdes for a week by The Irish Pilgrimage Trust.

I can’t put into words, without flooding the keyboard, what it meant to Tom to come home with a story to tell his siblings and with presents bought with his own money. The wrist band with the cross on it was worn proudly by his staunchly atheist brother.

He is dying to go back but the Pilgrimage Trust has to spread its charity and we won’t be able to apply again until 2018.

Crucially, respite care is not a right. Crucially, carers do not, under Irish law, have a right to a break from the work they do, despite the UN Declaration on Human Rights statement that “everyone has a right to rest and leisure, including reasonable limitation of working hours and periodic holidays with pay.”

Many carers bust all reasonable stress limits on a daily basis. I called unannounced to the house of one such woman a few weeks ago to find her in floods of tears.

“I’m sorry”, she said, “I’m just having a bad day.” With that her sometimes violent son burst out of the kitchen and took my hand just a little too firmly. “Be nice,” she pleaded with him. Her house is that woman’s prison except when the two carers from the autism services arrive in their hard hats and bring her boy out to run off some of his frustration in the local park.

But you do not pay over your Respite Care Grant if you get such a service and it wouldn’t go very far towards it anyway. If you get a service you count your lucky stars and pocket your grant. If you don’t get a service the grant is all you have.

And no one wants to know. Minister Noonan, Howlin and Burton bang on about work liberating us from poverty, while the doors stay shut on the homes where the work of caring is going on in secret. This politically correct blather about “care in the community” means, in practice, is that families are left to cope as best they can in private.

In some ways the old practice of institutionalisation was more honest. At least it assumed that responsibility for intellectually disabled people with complex needs was that of the wider community. Nowadays families are left on their own with what the HSE/NUIG study calls “severe restrictions on their life choices.” Extreme political correctness pretends that disability does not exist. The HSE/NUIG study says: “A social model of disability sees the social world as causing disability by the imposition of barriers rather than disability being the effect of impairments.” This is balderdash. Disability is a fact and it sucks. What’s true is that there is such a wide range in the types and severity of impairments from which the human family suffers that few generalisations can be made about disability. What’s also true is that every disabled person should get the chance to make the most of his or her abilities.

But the inexpertly directed payment of a Respite Care Grant does not amount to a strategy for respite care. And disabled people are the first to suffer when carers succumb to illness and depression and families break apart because we refuse to even name the problem they have, let alone roll up our sleeves to help.


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