ISSUE 76 of FRONTLINE circulates at a time of unprecedented national economic uncertainty, with government signalling extraordinary and deep cuts throughout all sections of the public service. To say that there is a considerable uncertainty for families with a son / daughter, sister / brother with an intellectual disability requiring new or enhanced service is an understatement.
Throughout this issue there are excellent reports of good practice and innovative thinking. There is, however, an underlying theme of the need to look at how future services for people with intellectual disability are delivered. The delivery of quality services for people with Intellectual disabilities was always dominant in the thinking of the late Dr Barbara Stokes, Mr John Gately and Mr Ger South.
Dr Barbara Stokes was long associated with St Michael’s House and was to the forefront in developing their services and, in doing so, established strong and abiding links with families.
Mr Ger South of Limerick was a tireless campaigner for people with intellectual disabilities. He was the consummate lobbyist, and built a strong network of support in Limerick and throughout the country. He was instrumental in the decision of the Communication Workers Union of Ireland to establish a housing support fund from which many associations around the country have benefited.
The sudden death of Mr John Gately, CEO of St Hilda’s Services in Athlone, has left a huge void for family, colleagues, friends, people with intellectual disabilities and their families.
Barbara, Ger and John were always to the forefront in making sure the needs of people with intellectual disabilities were addressed, by paying attention to the quality hallmarks of respect, Inclusion, opportunities for employment, community living, and individualised services.
Information from the National Intellectual Disability Database records the major provisions in intellectual disability services since data were first collected in the 1970s. The report also identifies that while the development of services has enhanced people’s lives, people are also living longer and their needs are changing as they age. In some HSE areas a proposed response to the changing needs of older people has been to seek nursing home accommodation. A driver for such a decision appears to be lower costs and not necessarily the needs of the individual with the intellectual disability. To date there has not been an open debate as to whether such decisions, if made, are necessarily a right fit for the person with an intellectual disability.
Value for money is a large consideration for government. Better value for money cannot mean compromising quality of life and wellbeing, leading to an inexorable slide back to large inappropriate congregate settings. Savings from providing better value-for-money services should not be gobbled up by the HSE’s voracious appetite for savings to fill shortfalls elsewhere.
Can decisions relating to value for money take place in the absence of a serious debate on providing direct financial support to families? Could some families make better use of a proportion of the money received by service providers for their son or daughter? Such a choice may not appeal to all families or, indeed, work for all people with intellectual disabilities. But unless the model of service allows for this issue to be engaged, no hard data will emerge. There is a more serious question of whether we are getting closer to a point where the cost of our intellectual disability services as currently provided—statutory and non-statutory—have become unsustainable in the long term.
There are signs of innovation, change and a willingness to do things differently, but unless the existing structures, statutory and non-statutory, accommodate meaningful change—and at the same time retain inclusion, community living and work opportunities which lead to enhanced quality of life for people with intellectual disabilities—motivation for change will wither.