My message to the next Dáil: Fergus Finlay — give people with a disability the ability to live a full life
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When I started working in politics, people with disabilities depended on charity. They were labelled, seen as sick, and dependent, to be hidden away. They weren’t seen as full equal Irish citizens who had to confront barriers that we had put in their way. Maybe things have moved on a little bit since those days, but I often wonder how much.
In the years I’m talking about, several pieces of legislation might have made a difference. The one on education was never properly commenced, the Assisted Decision Making Act has yet to make any real impact, and the other one, the Disability Act of 2005, may just be the worst piece of legislation ever crafted. It makes the lives of people with disabilities, and their families, immeasurably worse.
Every government since 2005 has known that. And every party in the state (with the exception of Sinn Féin), has been in government since then. They all could have fixed it, and none of them did.
There are two really weird things about this.
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The first is the appalling waste of money involved. The second is that this is not really a problem at all, but an opportunity to fix a problem.
We’ve wasted billions and billions over the years.
Billions are spent every year on organising assessments of need that don’t deliver any of the services they specify.
Billions more are spent every year on limited education for students with additional needs — for thousands of those students, especially if they have an intellectual disability, that education stops abruptly at the age of eighteen.
Billions are spent on so-called “day services” for people with an intellectual disability, even though many of the services in question have no developmental value for the people using them.
Billions are spent every year on delivering residential services which are enormously variable in quality.
If you add it all up, it comes to tens of billions of euro.
Nobody can really say that Ireland is the best place in the world to be a child or an adult with a disability. Despite all our talk.
But we can fix it. And, funny enough, if we fix it, we’ll fix a lot of things for a lot of people. And by spending the billions better, we might even save money. It will take a full term, but it can be done.
First, gather all the money together, from Education, Social Protection, Health, and elsewhere, and put one minister in charge of policy and implementation. Put that minister at the Cabinet table — that’s essential and it’s never happened. It would be the game changer — one of the things you’ll be remembered for. You’ve had a succession of junior ministers in charge over the years — the current one, Anne Rabbitte, is serious and hard-working. But junior ministers can’t get the job done.
Second, put the education system to work, doing what it ought to have been doing for years. Train dozens more therapists and professionals. We have an acute shortage in every single area. To give you just one example, we train 100 speech and language therapists every year, in just four colleges, and we need 300. Start now and you’ll fill all the gaps in four or five years.
Third, accessibility and reasonable accommodation. Make the private sector play its part alongside the public service. Set statutory targets, in employment and in access to services, and really enforce them.
Fourth, recognise people with disabilities as rights holders and legislate for it. Not just the right to a meaningless assessment, but the right to realise all the services that flow from that assessment on a progressive basis.
And this is the most important bit — really go after value for money.
Some years ago the government of the day asked a man to write a report, and they asked him this question — how do we get real value for money in respect of the billions we’re spending on disability? All of us in the disability sector, people who cared, were terrified. Because the man they asked to do the job was a senior accountant and a banker. Laurence Crowley was his name. What could he possibly know, we wondered. What could he possibly care about except cutbacks and savings?
Well, to give him his due, he produced a report — 314 pages, including 66 pages of appendices. Its conclusion was stunning.
If you really want value for money, the report said, put the power in the hands of people with disabilities themselves. Get away from what the report calls “centre-based services’ and make the services more accountable to the people who use the services. One of the most revolutionary concepts put forward by this banker and accountant was an idea called individualised funding, which transfers choice and control to the person using the service, and involves the all-powerful organisations finding new ways to respond to real identified needs.
In the years since that report was published there have been some little attempts in little pockets of the country to try out that model. And there is loads of evidence that it works.
But mainly, that report has gathered dust. Spending on disability services has gone up and up, very large organisations have become more bureaucratic and less transparent, the management of things like assessment of need has become more and more chaotic and hurtful, and the quality of life of Irish citizens with a disability has not improved one iota. They have no better access to jobs and careers, no better access to educational opportunities, no better access to essential therapies, no safe, secure, happy, and dignified residential settings when they need them, no real rights in law.
Put disability in the Cabinet room, with the entire budget in the hands of one minister. Mandate every third level college in Ireland to start training the therapists and professionals the country needs, to treble the number of graduates in five years.
Set targets for the public and the private sectors to enable more and more people with disabilities to access services for themselves and to hold down jobs. Legislate for a meaningful set of rights for people with disabilities, and remember — no economy in the history of the world was ever damaged by steps towards greater equality. Finally, give more power to the people, and demand more responsiveness from the system.
It's time to stop spending more and more money on services that don’t give people with a disability independence and dignity and the ability to live a full life. It’s time to put more power and choice in their hands. It might take a bit of bravery to admit that we haven’t got it right. But now is the time. This rich country can do whatever it sets out to do. And we would never regret it.