For an Able Life

I am campaigning for the reversal of the imposition of charges on disabled adults who are living independently. Click for some history.

I guess when my main activism has been concentrated around ensuring that my sister and every other person with a disability is treated in a decent manner just as every other citizen of this republic should be.

I read this piece by Fergus Finlay (updated link now in Irish Examiner archive) in the Examiner* back in April and I was positively seething afterwards. I urge everyone to read Fergus's piece. And please Click the Clamp to the right to sign the petition - >

My sister, who is a year, a month and a day younger than me, is intellectually disabled (as if she didn't have enough to put up with being my sister) and lives quite happily in Killarney, in sheltered housing managed by the Kerry Parents and Friends Association who do a fine job trying to ensure that people in Kerry can live as independently and fulfilling a life as possible. Finding a place close to home was a process of years of fighting mainly on the part of my mother dealing with the various bureaucracies of the state, during which she was placed in Devlin, Co. Westmeath, Mayfield Co. Cork, Tralee and now Killarney.

It now appears that the department of health (which has historically dropped the ball on supports for those with disabilities) is planning to implement the same regime of charges for those with disabilities as for the pensioners in residential care. Which means they will charge disabled people for living in residential settings. And charge them out of their disabled person's maintenance allowance. The DPMA is currently €184 per week which is less than an old age non-contributory pension and about the same as the dole. So if you are on the dole, and live away from home the state will pay you a rent supplement but if you make the same attempt to live independently as a disabled person the state will charge you for the pleasure? And, get this, the state is also planning to apply this new regime retrospectively! They are right now sending bills to the parents of people with disabilities looking for back payments. Can you fucking believe it?

You know one of the most stressful things for parents of someone with a disability is the ever present thought of what will happen when you're gone. This is someone that you love with all your heart but you know that unlike your other children who you will also worry about (worrying seeming to be in the very nature of parenting, and is something that you don't realise until you become a parent yourself or see friends become parents) that your disabled child won't ever be able to fend for themselves completely and they will always need someone to be looking out for them. And when you're gone you hope that your community will care for them and the state which is the community writ large and the mechanism for expressing that care will do what it can.

I actually genuinely thought that Cowen's efforts, particularly in his budgets , were the sign that the issue of treating people with disabilities fairly, and supporting those organisations that work in the area, was now completely part of the mainstream of Irish political life. I thought despite all the other differences I might have with the guy that here is someone that gets it.

I can tell you now that anyone whether from the revenue or the department of health who tries to take or takes by sleight of hand money from my sister will find me on their door beating their fucking head in with whatever comes to hand. When it comes to my sister I will happily get all Timothy McVeigh on you and your place of work.

As Fergus points out unlike the elderly those with disability will almost certainly never have the chance to be members of the work force and accrue money and assets that might be put into paying for their care. Again, I would urge people to read Fergus's piece he manages to be put it much more than I do.

* The examiner has in the last few years become my alternate to the Irish Times, in large part because you can't depend on the Independent to get the days of the week right.