Reports of research projects are usually destined to gather dust on library shelves. Policy makers and service providers may be entranced by the idea of finding out what works or what’s needed, but they have much less enthusiasm for implementing the changes proposed by research findings. Having authored a fair few reports in my career, I still live in hope that the next one will be different. And perhaps this will be the ONE!
Short breaks provided by host families have been available in Ireland for 30 years. This family-based model of providing ‘respite’ to families with children and adults with disabilities involves recruiting approved individuals, couples and families who provide personalised breaks during the day or overnight in their own homes to selected individuals at various times during a year. This report of the second national survey provides a snapshot not only of the present—but depressingly, also of the lost—opportunities in the past three decades.
Up to 2009, 12 organisations provided 30 schemes across Ireland with around 430 households hosting some 308 children and 280 adults with a variety of intellectual, physical, sensorial and behavioural disabilities. The survey provides detailed information about the people acting as hosts, and particularly of the training they receive in moving and handling, managing challenging behaviours and in undertaking invasive procedures. Likewise, we read about the characteristics of the people they welcome into their homes and the range of disabling conditions they present, including challenging behaviours, autism and mental health needs. Further information is also collated on a variety of issues, including how the schemes recruit hosts, the payments provided and insurance needed. In sum, the report documents how the early promise of this alternative model of service provision has been realised, albeit by the relatively few individuals and services that have been committed to sustaining and developing this approach.
But the real value of this report comes from reading between the lines! Firstly, these schemes are not available throughout Ireland. For example, there are none in counties Donegal, Monaghan, Meath nor—amazingly—in Cork! Secondly, these schemes, at best, represent around 12% of persons who had any form of short break (respite) in 2009. Given the relatively low cost of this style of provision compared to overnight care in community homes or residential centres, this seems a scandalous waste of money, especially when the need for short breaks is well documented in the National Intellectual Disability Database. Thirdly—and for this you don’t have to read between the lines—four of the 30 schemes are now inactive and five are in trouble because of cutbacks and have stopped recruiting. By 2010, Ireland had lost nearly one-third of its family-based schemes, but will more follow? Hence my conclusion that Ireland has witnessed a generation of lost opportunities.
How do you account for this sorry state of affairs? The report details a valuable set of recommendations directed at policy.makers, local managers and the network of current providers of home stays and short breaks. For me, the key ones are leadership from the Department and the HSE, a shift of funding towards personalised budgets, and greater advocacy by families and people with disabilities as to their aspirations and preferences.
No single report will bring about such fundamental changes. But taken together with other reports that document the benefits of these schemes to families, with those that spell out the cost.efficiencies of personalised approaches and those that compare Irish approaches to those followed in other European nations, then a compelling case can be made for building a different model of short.break provision in Ireland. In this respect, the title of this report is especially apt: a Host of Opportunities beckons.