Last year in Frontline (72), I expressed the view that there might be an upside to these more straightened economic times for people with intellectual disability receiving a service from the HSE or a voluntary body funded by the HSE. Amongst the benefits I mentioned were greater financial transparency and accountability for money spent, more emphasis on giving value for money to service users and a new focus on innovative and flexible projects. I felt optimistic that this would happen because the old way of doing things with its spiralling costs and poor track record would no longer be sustainable.
An estimated €1.5bn was spent on disability services in
2007—around €2.3bn if you include mental health services in the equation. Yet when we look at what has been achieved (admittedly from a low start base in the late 1990s) the picture is not rosy. Waiting lists for services continue to rise. The National Intellectual Disability Database Report of 2008 shows that demand for new residential places has increased by over one-third over the past five years. The current figure of 2181 is the highest since the database began in 1995. The demand for respite places has also increased steadily since 1998—the current number is 2008. The only encouraging figure was the large increase in the number of day places in the last three years. However, at the time of writing this, Inclusion Ireland is being contacted by parents who are being told that their son or daughter will have no day place this year, or only
Apart from the financial imperative driving change, there is the growing demand from people with disabilities to live the lives of their choice to the full. There is a recognition that a good life can be led if the proper supports are put in place half a place due to the ending of the multi-annual funding programme last year.
The question must be asked: how have we reached this distressing state of affairs? As with all such questions, the answers are never simple. One answer relates to the reliability of the data collected. A recent audit carried out by the National Intellectual Disability Database showed that the findings on the need for future residential care services was over 50% (50-4%) inaccurate, and concern was expressed by the auditors on the lack of family and service-user input into the database generally. Were people perhaps being put down as needing services in order to boost waiting lists, providing services with extra clout when negotiating funding?
Another answer could be that some families are putting their child’s name down for future residential service—hedging their bets in the absence of any other alternatives, or for fear of losing out on funding for their adult son or daughter. Some families have expressed a wish that their son or daughter can continue to live in the family home with support; others favour more independent living in an apartment near the family home. However, the current system of funding—giving a service provider a sum of money to provide the person with a residential place—does not allow for such options.
This system is expensive (€80,000 is the HSE average cost—back in 2004, the National Federation of Voluntary Bodies had an average figure of €106,000- It is inflexible because the person does not have much say in how the money is spent, or a choice of service provider. Perhaps more importantly, the money is attached to the service, not to the person. If the person wishes to transfer to another service, for whatever reason, this cannot happen without a long period of protracted negotiations between the HSE and the service providers, without much reference to the person.
Until recently there appeared to be little interest in tackling this dysfunctional and costly system. Services who have done well under the old system are reluctant to change and as long as the funding continued to flow there was no imperative to do so. Of course, it is easier to do what we have always done and to present obstacles to bringing about change. In April 2009, in answer to
David Stanton’s (Fine Gael) parliamentary question on the amount of money being made available to not-for-profit and voluntary organisations, it was recorded that in 2008 at least ten organisations were in receipt of over €20m, and one had received €173m. There is no doubt that the money is needed to provide services to the 25,000 people with intellectual disability in this country, but does it provide value—not just for money but in terms of quality of service provision? An Bord Snip Nua has estimated that there could be €50m savings if measures are introduced to achieve greater efficiencies in the non-governmental agencies in disability.
The Comptroller and Auditor General (2005) found that that there was no proper audit of money spent, services provided or measurement of outcomes achieved, and that funding was given based on incremental increases and with no tendering for services.
The huge problems facing the Irish economy and the mounting criticisms of the costs of the public sector—including the HSE and a voluntary sector which (for the most part) mimics the pay structures of the HSE—have meant that policy makers have been forced to address the issues. One immediate outcome is the government’s Value for Money and Policy Review of Disability Services currently under way. Surely, this is a good thing if it is not seen only as a short-term cost-cutting exercise.
Apart from the financial imperative driving change, there is the growing demand from people with disabilities to live the lives of their choice to the full. There is a recognition that a good life can be led if the proper supports are put in place—paid and unpaid— from family, friends and professionals, and from approved service providers, as needed.
Change will not happen overnight and many people, and services, will be nervous, but the alternative—to continue as we have been doing—is no longer on the cards.