OPINION:The amount we spend on disabilities is one thing – how we spend it is equally important, writes DEIRDRE CARROLL
CUTS IN services for people with intellectual disabilities have dominated press headlines recently. You would need a heart of stone not to be moved by some parents’ accounts of the devastation caused by these cuts.
What drives ordinary people to feel that they have no option but to reveal publicly the intimate details of their daily lives to secure basic services for their children?
In 2004 the government’s national disability strategy was launched. The right of people with disabilities to live in their own communities with reasonable support from the State was acknowledged and extra funding was allocated to deliver the strategy.
What has changed? The simple answer is, as Bill Clinton memorably said during his first presidential campaign, “it’s the economy stupid”.
However, simple answers do not always enlighten. Difficult questions about how we provide essential services for people with disabilities need to be asked: questions about value for money for the €1.6 billion spent in 2008, an increase from €1.2 billion in 2006; questions about the respective responsibilities of the Department of Health, which is responsible for formulating disability policy, and the Health Service Executive (HSE), which is the purchaser of 90 per cent of services from not-for-profit and for-profit service organisations.
Most importantly, there are questions about where persons with disabilities fit into this scenario.
There is little place in this system for the individual. The person does not have a say in how the money is spent, or have a choice of service provider.
The money provided is attached to the service, not the person, and is based on general costing bands as opposed to individual assessment. If the person wishes to transfer to another service this cannot happen without a period of protracted negotiations between the HSE and service providers.
Carl O'Brien, reporting in The Irish Timeslast month on a draft HSE report, pointed out that 4,000 people with disabilities are still living in institutions, costing on average €115,000 per person per year. The report highlighted that these services are of poor quality and are not subject to independent inspection or standards.
The Comptroller and Auditor General, in a 2005 report on the not-for-profit disability sector, found that often there was no proper audit of money spent or services provided and no tendering or measurement of outcomes achieved. Over 70 per cent of all funding to not-for-profit organisations goes to just 25 organisations.
Until recently there appeared to be little interest in change, or incentive for it.
It is clear that existing funding is needed to provide services to people with disabilities, but does it provide for good quality services?
“An Bord Snip Nua” estimated that €50 million could be saved by introducing greater efficiencies in the not-for-profit agencies. This has come in for criticism on the basis that people with disabilities cannot have their services cut to pay for a problem they did not cause.
At the present time, all that people can do is refuse to accept cuts. The debate about what could be on offer has been overshadowed by the spectre of cuts.
There is no incentive to demand better quality, as the people with disabilities are not in control of the costs. If they were, they might ask different questions, including whether they could get better services elsewhere.
The Government’s Value for Money and Policy Review of Disability Services is surely a good thing as long as it is not seen as simply a cost-cutting exercise.
Apart from the financial imperative driving change, there is growing demand from people with disabilities to live the lives of their choice. There is recognition that a good life can be led if the proper supports from family, friends, professionals and service providers are put in place. This will require a change in how services are funded, as well as a change in mindset and attitude.
The alternative of continuing as we are is no longer on the cards.
What will happen next year?
Will we be facing groundhog day?
It is time for Mary Harney and John Moloney to ringfence disability funding and ensure that new policies are implemented by the HSE and those contracted to provide services. The exclusion of people with disabilities from the equation must end.
Deirdre Carroll is chief executive officer of Inclusion Ireland, the national association for people with an intellectual disability