Harsh cuts loom for the intellectually disabled but there is a smart option

THE future looks bleak in Ireland for people with an intellectual disability.

The future looks bright in Ireland for people with an intellectual disability.

There’s a profound contradiction between those two sentences, of a sort that ought to make people angry. Because they’re both true.

The first statement will cause a hell of a fight soon. The second will only happen with a long and determined battle. But it could happen, and here’s how.

Every time I write about intellectual disability, people say to me “I thought we had this fixed?” Ever since the Special Olympics was held in Ireland, people think that the Games had a profound effect on public policy, just because they had a profound effect on public attitudes.

They had an impact to some extent. The governments of then Taoiseach Bertie Ahern pretended that people with an intellectual disability were high on the political agenda.

It wasn’t difficult to plough money into services back in those days, because buckets of crumbs used to fall from rich men’s tables. They even pulled off the three-card trick of pretending they were legislating for the legal rights of people with an intellectual disability, by producing legislation that gave them legal rights to more or less nothing.

But, apart from one or two short periods, there was never any plan behind the posturing.

People with an intellectual disability got the crumbs when they were available, and lip service about strategy, but never real political priority. The minute the Celtic Tiger collapsed, the first cuts imposed in the name of austerity were to the living standards of people with an intellectual disability.

The most recent budget contained the bold statement that services for people with an intellectual disability, funded and provided by the HSE, were to be protected. Translated into reality, that meant they were to be cut a bit less than other HSE services. As reality has been spelled out in HSE circulars, that means intellectual disability services will receive cuts of just under 4% in their funding this year, compared to the 5% in cuts to most other services.

The HSE is telling service providers that there will be no more money for day places this year.

That means there will be no room in essential therapeutic and developmental services for people leaving school, no possibility of accommodating people with emergencies in their families. As the service providers, in their turn, start telling families this news, there is likely to be a massive head of steam building up in disability protests throughout the summer. This crisis will hit families in the early autumn, and it won’t surprise me if the Government isn’t forced to find extra money to ease the situation.

Already, families are being invited to make a financial contribution towards the cost of respite care. Respite care is the equivalent of giving a family a week or a fortnight off from the work of providing care at home, and it can mean a huge amount. It is entirely unacceptable that families with money should be able to access more respite care, while families who are coping with just as much stress but don’t have money have to do without. But there are parts of the country where that’s becoming a trend.

That’s the bleak picture — a picture that represents the visiting of austerity on highly vulnerable people (who find it hard to protest, of course, which makes them even more vulnerable). But side by side with that, how about this as the introduction to a statement of public policy: “Having choices, doing interesting and useful things with one’s time, learning new skills, meeting people and enjoying their company — these are things that most people take for granted” … That’s part of the preface to New Directions — Personal Support Services for Adults with Disabilities, one of three strategy documents published by the HSE last month. (The other two, equally important, deal with autism services, and with residential and respite services). Taken together, they are intended to represent a fundamental redesign of services operated and funded by the HSE over the next four years. The way in which adult day services have evolved over the years has tended to get in the way of the reasonable expectations listed above in the preface. Our adult day services have, for the most part, been organised as segregated services, separate from local communities and offering limited options, experiences and choices. This report is making radical proposals and recommendations to change that.

“New Directions … challenges people with disabilities to have high expectations for themselves and of their community. It also challenges families and services to adopt an attitude of positive risk-taking. It encourages providers to provide greater outcomes from their current service.”

If we take New Directions as an example of new thinking, it’s visionary, radical and exciting. It’s centred on a simple proposition. Services should be designed in future around what people with an intellectual disability need, and not around what service providers have available.

In its own words, “New Directions will involve a radical shift from provider-led programmes to individualised, user-led supports. In the new approach, each adult will have access to flexible and outcome-driven supports to enable them to live a life of their choosing that meets their own wishes, aspirations and needs. The core purpose of the supports will be to enable people to participate as equal citizens in their community and to contribute to that community.”

The strategy (if it’s implemented) will give every adult with an intellectual disability the sort of basic and meaningful rights for which people have campaigned for years. They’re not expressed as rights, but as a range of personal supports to which every individual will have access. Supports to do things like: have influence over the decisions which affect their lives; achieve personal goals and aspirations; be active, independent members of their community and society.

The strategy makes it clear that the nature of the support will depend on the particular needs and abilities of each individual. It will be the responsibility of the service provider to work with each individual to tailor the provision to the individual’s needs.

Unless I misunderstand it, this proposal has been published by the HSE as its intended strategy for the next four years. Implementing it will demand a huge cultural shift at every level, but it could make Ireland a world leader in how we treat people with an intellectual disability.

Clearly, organisations like Inclusion Ireland (who were instrumental in the development of this strategic thinking) will have to get organised to campaign for its implementation. It’s the only way to get beyond the awful austerity of today — the bleak future — to the promise of a new strategy — the brighter future. That demands politics and political action. And political action doesn’t come easy. It has to be fought for, by angry people who demand change, and who demand results.