We pay five-star rates for disability, so why isn’t it a first-class service?

A SUM of €68,648.

That’s what it costs in Ireland to provide the services that a person with an intellectual disability needs. Per annum.

On Sunday night last, I found an offer on the web for two nights bed-and-breakfast in the Shelbourne Hotel in Dublin. It was €193 per person per night. The breakfast in the Shelbourne is, I believe, good, and because it’s a buffet you can eat your fill. At that rate, it would cost €70,445 to stay in the Shelbourne for a year. You can get cheaper deals in a range of four-star and five-star Dublin hotels.

The comparison is fatuous. But it is arguable that we are paying for five-star disability services in Ireland. The question is: Are we getting them? If not, why not? That question is more pertinent in the weeks after this newspaper highlighted the number of young school-leavers with an intellectual disability who were facing the threat of having no service at all. Thankfully, after weeks of pressure within and from outside the system, that situation has improved considerably.

But the system still staggers from crisis to crisis. It’s not a crisis that unduly affects the providers of the system — its greatest impact is on the users. That’s the way it will continue unless the rules are fundamentally changed.

The evidence for all this comes from a fascinating report published last week by Kathleen Lynch, the minister for disabilities. It’s not a particularly easy read — it doesn’t even have an attractive title (it’s the Report of the Value for Money and Policy Review of the Disability Services Programme). But its findings are devastating.

According to the report, we spend more than €1.7bn each year meeting the needs of 26,000 of our citizens. That money is designed to meet their needs at all stages of their lives — through early childhood and education, to elderly life and residential care. (The figure of €68,648 that I used to start this article is calculated by dividing the total spent in 2009 by the total population of people with an intellectual disability in the same year — that’s the most recent year for which both figures are available; 2009 was also the peak year in terms of spending.)

That is an enormous sum of money, and it has grown rapidly. That’s not because the needs of people with an intellectual disability have changed or deepened over time, or because the population that needs services has grown significantly. There were just under 25,000 people with an intellectual disability in 2005, just over 26,000 in 2009.

It has grown because the historical basis for funding disability services has been what was called the “block-grant” approach. The State, through the HSE, would agree a grant with a service provider, and then that grant would be paid year after year after year. In better times, the grant would be topped up by the rate of inflation, and maybe a little bit more.

The point is that the block-grant only ever referred to how much you had last year. At some time in the past, the grant was related to things like the number of people who needed a service, the quality of that service, the number of employees needed to provide it, and so on. But, over time, all those issues become more and more blurred.

So now there are service providers who know how much money they receive in total, but who can’t (or won’t) account for what they receive in respect of any individual.

As the authors of the value-for-money report say: “Again, for historical reasons, funding has, in general, been provided for places rather than people. In more recent years, the funding of new places was made at local level on the basis of providing services to named individuals, but, once allocated, the funding did not remain associated with that individual but was absorbed into the agency’s base.”

For a number of years change has been under way in this area, with the unaccountable grants being replaced, little by little, with service-level agreements that have more reporting and accountability requirements. That’s a start, but in two key recommendations the value-for-money report calls for resources to be allocated at national, regional and local level, on the basis of programme budgeting, where the objectives, output and outcomes of each element of the budget are specified, rather than incremental budgeting based on the calculation of changes to the previous year’s baseline.

And, in a simple sentence that could transform the way services are delivered, they say “the position of funding places, rather than people, should be reversed”.

In fact, and intriguingly, there isn’t a moment in this report where the authors suggest that we are spending too much money on supporting people with an intellectual disability. Their key finding is totally different, and, in policy terms, it’s a lot more radical.

“The review proposes a fundamental change in approach to the governance, funding and focus of the Disability Services Programme, with the migration from an approach that is predominantly centred on group-based service delivery towards a model of person-centred and individually chosen supports.” That might sound like gobbledegook, but its meaning is profound. If it were implemented, it would mean that people with an intellectual disability, rather than being cogs in a machine, would be in a position, with their families, to exercise far greater control on the quality and range of services available to them.

The value-for-money report endorses the view that such services could (among other things) be directed by the person (with their family/advocate as required); flexible and responsive, adapting to the person’s changing needs and wishes; and not limited by what a single service provider can provide. Even more intriguingly, that wider, better range of services, directed at the needs of the person rather than the needs of the organisation, could be delivered at the same cost as what we have now.

The key to that solution is better governance, fuller accountability, and a clear distinction between policy and operations. As the authors say, “a core principle that guided this review is that agencies which receive funding from the State for the delivery of services and supports to people with disabilities are accountable for that funding, and the necessary systems and protocols should be put in place to ensure full accountability and transparency on a standardised basis”.

There is real hope here — and isn’t it extraordinary that hope would be found in a value-for-money report. This is the kind of change that could really put people with an intellectual disability more at the heart of policy, with a view to demanding and delivering results in return for investments.

That kind of change, naturally, also requires openness on the part of agencies that have become rich and powerful by providing services in the way they always have. We may find, of course, that that’s the biggest challenge of all.