Professor Roy McConkey:

I thank the committee for the opportunity to address it. I will focus on people with intellectual disabilities who continue to live in congregated settings, despite the aspirations contained in the HSE report entitled Time to Move on from Congregated Settings. I will highlight facts and figures for the committee obtained from our analysis of information contained in the National Intellectual Disability Database. This is managed on behalf of the Department of Health by the Health Research Board, HRB. It is a unique information resource that few other countries have available. Along with colleagues from the HRB led by Dr. Sarah Craig, we have been able to document the gap between policy intentions and the reality. Our findings have been published in international peer-reviewed scientific publications.

In our research, we went back to 2007, when more than 4,000 people with an intellectual disability in Ireland lived in congregated settings, which are those settings with ten or more residents. We tracked those people from then to 2012, when the HSE’s time to move on policy was announced, and on to 2017 to see what changes, if any, had happened over those ten years. Although there had been a 30% reduction in numbers by 2017, the latest date for which we have information, more than 3,000 people remained in such settings. However, this reduction was more marked in certain community healthcare organisation, CHO, areas than others, and reductions had begun in some areas even before the time to move on policy was announced. Some of the reduction was due to deaths, but over these ten years approximately 750 people had been resettled from congregated accommodation. Therefore, the policy was feasible, albeit only small numbers of people were able to avail of it.

Here is the rub, though. Almost the same number of people had been admitted to these settings over those ten years. Why? Largely, it was because the policy of no new admissions contained in the policy document had not been followed. If a crisis arose and no alternative provision was available, then people had to be admitted somewhere and that happened to be into congregated settings. The fact that people continued to be admitted to these settings prolongs the time that people continue to use congregated settings.

Our analysis went on to identify the people at the greatest risk of living in congregated settings. They were people aged 55 years and over, those with more severe disabilities and those living in accommodation provided directly by the HSE rather than by voluntary organisations. We drew four lessons from this analysis. First, policy implementation occurs unequally, even in a country as small as Ireland. Who allows this to happen? Second, certain areas are more receptive to innovation than others. We need to understand the reasons for this, although I suspect that local leadership is likely to be a leading factor. Therefore, have we invested in changing the hearts and minds of service providers and professionals who have direct influence over the type of services that we provide? Third, if the 30% reduction of people living in congregated settings took ten years to achieve, and if the process is not accelerated, then it will be a further 20 years, until 2040, before congregated care in Ireland is confined to history. Can we afford to wait that long? Fourth, so-called "bed reduction", or removing people from congregated settings entirely, cannot occur in isolation from creating alternative and better provision.

Other studies we have conducted in Ireland have demonstrated that improvements in people’s quality of life come from person-centred and community-based supported accommodation. This is where future investment needs to be made, if the State is to maximise the value for money it obtains from intellectual disability services. I hardly need to remind the committee of the similarly entitled report, Value for Money and Policy Review of Disability Services in Ireland, that was issued by the Department of Health in 2012. It was published nearly ten years ago. Why, then, does it take so long for things to change for people with a disability in Ireland? Hopefully, that is a question that the committee will ponder.