Opinion piece - Deirdre Carroll, CEO, Inclusion Ireland

Could there be an upside to these straightened economic times for people with intellectual disability receiving a service from the HSE or organisations funded by the HSE? Could the benefits include a greater emphasis on giving value for money to people with disability availing of services, a new focus on innovative projects as well as more financial transparency and accountability for public money spent? For the first time in many years there is a real and growing interest in reforming how services for people with disabilities are delivered. There appears to be a new appreciation from the Department of Health and Children, the HSE and voluntary service providers that the old way of doing things with its spiralling costs is no longer sustainable.

The recent request for submission from the public on a Value for Money and Policy Review of Disability Services confirms this shift in thinking. The purpose of the Review is to examine current policy objectives for disability services, assess how well services meet these objectives and make recommendations on any changes needed for the future within a value for money framework.

An estimated €1.5 billion was spent on disability services in 2007, around €2.3 billion 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 the demand for new residential places has increased by more than one third over the past five years. The current figure of 2,256 is the highest since the database began in 1995. The demand for respite places has also increased steadily since 1998, the current number is 2,129.The only encouraging figure was the large increase in the number of day places in the last three years However, this summer Inclusion Ireland was contacted by many parents who were told the devastating news that their son or daughter would have no service or place to go in September when they left school. This is the equivalent for these young people and their families of telling school leavers in July that there will be no third level places for them in September and if they are lucky they may get to go to college two days a week!

Thankfully this problem was resolved by the release of monies from an emergency fund of €8.5 million set aside by the HSE, and by HSE staff and voluntary service providers coming together at a local level to find a solution. It is unlikely that this money will be available next year. In fact up to the end of September/October only approximately €3.5 million of the emergency fund had been spent. The HSE has been asked to find further savings next year and families and people with disabilities are worried and frightened that their services will be withdrawn. The challenge for 2010 will be how to meet the increase in demand with less money.

The current system is expensive (€80,000 is the HSE average cost for a residential place and €15,000 - €20,000 for a day place). It is inflexible, the person or his/her family does not have much say in how the money is spent, or have a choice of service provider, and perhaps more importantly, the money is attached to the service not 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 service providers, without much reference to the person’s needs or wishes.

Such a model cannot provide the answers going forward. Many people are on waiting lists for traditional services provided in segregated settings as they have no other option. The private market does not operate in Irish disability services nor is there any competition - until the introduction of independent inspection and regulation of disability services I would not be encouraging this development. Some people have expressed a wish to continue to live in the family home with support. Others favour more independent living in a house or apartment nearby. Most want a job of some sort or meaningful daily activity.

Until recently there appeared to be little interest in change. Services that have done well under the old system were reluctant to change. As long as the funding continued to flow there was no need to do so. In an answer to a parliamentary question by David Stanton TD, in April 2009 on the amount of money being made available to nonprofit and voluntary organisations, it is recorded that in 2008 at least ten organisations were in receipt of over €20 million and one had received €173 million. There is no doubt that the money is needed to provide services to the 26,000 people with intellectual disability in this country but does it provide value, not just for money, but for quality of service given?

More recently Deputy Stanton, in an answer to another PQ on how the €900 million multi-annual investment programme for disability 2006-2009 was spent by six government departments, was told that this information was not available from the Department of Health and Children. The Comptroller & Auditor General (2005) in a report on the nonprofit disability sector, found that that in many cases 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 no tendering for services.

An Bord Snip Nua estimated that there could be €50 million savings if measures were introduced to achieve greater efficiencies in the nonprofit agencies in disability. This has come in for much criticism on the basis that people with disabilities cannot have their services cut and should not be made pay for a problem they did not cause, but if money can be shown to be saved through greater efficiency then every effort must be made to do so. At present all people with a disability can do is demand better quality services and refuse to accept cuts. There is no incentive to demand better value as they are not in control of the costs. If they were, they might ask a very different set of questions, including can I get better value treatment/services elsewhere? Or is there a cheaper way that works for me. As long as there is no way to demand better value, cost inflation seems inescapable.

The problems facing the economy and the criticisms of the pay costs of the public sector and the voluntary disability sector, which for the most part is tied into the pay structures of the HSE, have meant that policy makers will have to look at these issues. There is only so much that can be cut from an organisation’s non pay costs in an area where staffing is the main cost. One immediate outcome is the government’s ‘Value for Money and Policy Review of Disability Services’ as noted above. Surely, a good thing if it is not just seen 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, paid and unpaid, from family, friends, professionals if required and also approved service providers are put in place. The chance to live a normal life in the community. The chance to be in control of their own life. This will require a change in how services are funded as well as a change in mindset and attitude. It will involve considerable consultation and negotiations with professional associations and unions whose members work with people with disabilities in more traditional and segregated settings.

There will be objections put forward such as people with disabilities and their families will find it hard to make sensible choices as they are too caught up in trying to cope, and people will not have the skills to manage their own funding or understand brokerage arrangements. This argument is part of a long tradition of infantilising people with disability and their families by association. It encourages dependency rather than promoting independent living.

Change will not happen overnight and many will be nervous but the alternative to continue as we are is no longer on cards. The recommendation of the Department of Health and Children’s Review will be crucial to this process.

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