Today, I will be attending a “Solidarity Event” hosted by the Network of Centres for Independent Living. This event aims to bring together representatives from Centres for Independent Living from around the country with TDs and the media, to publicly lobby to protect services for people with disabilities and prevent massively unfair cuts coming at us from a number of directions.
Now, we need this network, and we need events like this, but I’m not in full accord with the agenda. Top of the agenda is a call for our “leaders” (elected representatives) to commit to bringing in Direct Payments as part of a Personal Assistance Act. There is no doubt that a Personal Assistance Act is long overdue in Ireland to enshrine in law the human rights of people with disabilities that Ireland have signed up to in a number of UN documents. Since 1994, these documents have stated that access to a Personal Assistance Service is a RIGHT (not a privilege or a luxury) for people with disabilities, and that such a service be provided on the basis of the needs of the person with disabilities, NOT according to the miniscule budget allocated on a year-to-year basis by the HSE.
My main point of contention with this as the top item on our agenda today is the emphasis and priority given to Direct Payments. “Direct Payments” sounds great, doesn’t it? I heard it described by one disability activist as a “no-brainer”. However, it has a specific meaning when it has those capital letters, as well as a specific history. And in the context of the rights of people with disabilities in Ireland and the services currently available to us, it also has certain implications.
First to its meaning. Direct Payments (with its fancy capital letters) refers to a scheme whereby a person with disabilities would have their needs for a Personal Assistance Service assessed, and would then have a lump of money given to them so they can employ and pay a Personal Assistant privately. Currently, we have to go through a service provision agency, be that the Irish Wheelchair Association or a Centre for Independent Living, who administer the service according to the budget allocated to each individual service user by the HSE. Of course, if you are miraculously rolling in cash, you can buy the service from a private company. So Direct Payments would mean cutting out the “middle man” of the service provision agency. And this is doubtless ideal for some people.
The history of Direct Payments is an interesting one, given the current climate in Ireland. They were innovated in Europe by the Swedish, who have been trailblazers in the Independent Living Movement, and whose social democracy has put most other EU countries to shame in terms of creating a fairer and more equal society with an enviable standard of living. Sweden had already established a Personal Assistance Service before anyone thought of Direct Payments. So how did the idea even arise? Simple: Recession. When the country hit a rough economic patch in the 80s, services for people with disabilities were suddenly under threat. Direct Payments were thought up as a way of selling PA services to the government, while making it look like an overall saving for the exchequer. It looks like a saving because suddenly everything gets measured in “unit costs”, the government is saved all that fiddly administration such as drawing up contracts, organising accredited PA training and filing all those employer tax returns.
So in the context of Ireland right now, this makes the rosy glow with which a government department might view Direct Payments seem more like a sinister fog. All the talk in the HSE now is about “unit costs” – a way of seeing each individual with disabilities as just that – individuated, without context, without community. It turns the notion of a social economy inside-out.
It is fair to say that Direct Payments would be, at least in the short term, a pilot project, offered to those who want it. But given the way disability organisations seem to be screaming for it and heralding it as the ultimate realisation of our human rights makes me feel that it could become the expected norm. In that scenario, anyone who didn’t want Direct Payments would once again be “a burden”, an awkward stick-in-the-mud who wants everything handed to them on a plate.
Here’s how I would feel if I was offered Direct Payments today (or even next year):
· I have better things to be doing with my time than to become an employer and administrater to the people who are supposed to make my life easier
· My PAs would be people who showed up to my house every day, rather than part of a network of PAs and Leaders sharing the ideals of Independent Living. Who do I talk to if I have issues with a PA?
· Currently, the HSE grants me 15 PA hours per week, and the PAs get paid approximately 14 euros per hour. The vast majority of Leaders would say they could do with more PA hours than they currently have. But if I were given the cash to pay my PAs 14 euros an hour for 15 hours a week, then the government would be giving 790 more euros per annum for their pay than the government deems it sufficient for me to live on. That just feels like a kick in the teeth. What about all the hard work I do to keep myself alive and be active in my community? Is that worth less? Or should I stop trying so hard to be a complete human being?
· If the government gave me that 10 grand a year in a big brown envelope, I’d rather spend it on buying and maintaining the power wheelchair I need (which the government refused to give me any money for); I’d spend it on the ludicrously expensive bits of assistive technology I need, like 5000 euros for a 40-cell Braille display; I’d spend it on a nice big double bed with the mattress and position adjustments I need rather than accepting the government’s offer of a hideous, narrow, uncomfortable, un-sexy hospital bed which is actually more expensive, but the hospital ordered too many so they just want to get rid of them.
And that’s not even touching on the massive issues of transport and housing that all people with disabilities face every day of their lives.
But who am I to swim against this particular tide? Prominent voices in the disability community adore Direct Payments, and governments like it because it sounds “empowering” (in a capitalist kind of way), and adds up neatly in the books which have no column for a social cost / social benefit analysis. And given the current blasted Irish landscape, it may well come down to accepting that or accepting a return to the bad old days of dank institutions and blind beggars grazing their donkeys on the long acre.