I went for an uncomfortable trip down memory lane last night. It led me past a clinic where I had brought my four-year-old daughter in 1975, to a school hall in Ballymun where about one hundred people were sitting under children’s art work. Waiting for bad news.
Many of them had white hair, a few walked with sticks. Many had been through the pre-HSE versions of this movie when disability services were cut in the eighties. In those days I had been one of them.
My daughter had Rett Syndrome—the type of disability where you need support for everything; every piece of food that goes in your mouth; every soap-sud that runs down your back. If she were alive today, she’d be 41. I’m in my sixties and I’d come to support the service she had when she was alive. The service had been started by a determined mother in the 1950s and it’s a good service: dedicated staff, flexible, innovative. Like all HSE-funded services, it’s threatened by cutbacks. I miss my daughter, but tonight I think maybe she’s better out of it. I’m near the end of my capacity to care for a person with her needs and the HSE has intimated to St Michael’s House that people with disabilities cannot continue to have a ‘gold-plated service’.
Notice that word ‘gold-plated’. It suggests luxury, extravagance … but the day centres my daughter attended were located in ordinary houses in unpretentious suburbs—as are St Michael’s House’s residential houses. Staff are not overly medicalised or expensive. ‘Normal’ is what they’re aiming at. ‘Gold-plated’ is part of the ideological speak which seeks to shift responsibility for costs from the state to the vulnerable.
There’s nothing of Versailles about a good disability service—the gold lies in the people, the social care workers, the Link girls, the house parents, the nurses who open up the world for those who can’t do it for themselves. People cost money, but in this area they can’t be replaced by robots. The cuts have shaved about €11 million off the St Michael’s House budget in the last four years, but more difficult has been the moratorium on staff recruitment. Worse still is promised in the next Budget. Services are faced with various Catch 22s. Under ‘Section 38’ they can’t recruit staff; agency replacements are being cut; HSE agreements tie them to a certain level of service; yet HIQA standards (which have staff-client ratios) are being introduced. And St Michael’s House has particular problems. On the one hand its original service-users are getting old and losing their parents—that invisible night shift who have to be replaced by waged workers. On the other hand, its catchment area is mainly North Dublin, an area with the highest birthrate in Europe. Should St Michael’s House withdraw from its elderly residents? Or refuse parents with newly diagnosed babies. Or turn its back on school leavers?
It’s not as if the organisation’s costs are above average: the opposite in fact, according to the new Bible Value for Money. But that doesn’t seem to gain them any brownie points. And when your funding is cut and you can’t employ staff, what option do you have but to reduce services? St Michael’s House is trying not to do this, but there is only so much elastic in any system and the innovative and personalised extras are beginning to suffer. Parents were asked to volunteer their help for outings and hospital visits, and most are happy to do so. But not every client has an able-bodied parent.
The Department of Health and the HSE keep repeating: No more money. Yet there is money for TDs’ allowances, for ‘special’ advisors, for tribunal lawyers, for a referendum. How many social care assistants would that money fund? The policy-makers talk about a new model of ‘individualised service’, as if there was a magic formula to provide ‘better’ services at a reduced cost. I’m very glad I’m not negotiating alone for an ‘individualised’ service for my daughter. In my time I’ve seen a lot of models of disability provision strut and fret their hour on the stage—but a good service for people with significant disabilities always depends on the same things: enough kind, dedicated and imaginative people on the ground and an efficient system behind them.
I felt pretty sad listening to the parents in Ballymun. We’ll march, they said. Like the farmers. We’ve got to make Reilly listen, they said. Lobby, said the politicians (the younger, less secure variety). Eighty-year-old parents spoke. They had thought their middle-aged sons and daughters were secure and happy in a community house; now they didn’t know. Younger parents were worried about the post-school scenario. There was a mother who wanted to volunteer for outings, but she didn’t have the energy; her child hardly ever slept.
It isn’t nice to have to disclose sad stories in order to get supports for an ordinary life. It isn’t nice to hear well-dressed people who hold the purse-strings squabble over what the bare minimum is for the likes of people with disabilities. Health cuts hurt the old, the sick and the handicapped—that was one of our slogans in the 1980s. The terminology may have changed, but I fear not much else has.