Enquiry report on the human rights issues arising from the operation of a residential and day care centre for persons with a severe to profound intellectual disability

by Colin Griffiths

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This report, published by the Irish Human Rights Commission, was published in March 2010 followed an inquiry into whether the state had fully respected the human rights and provided adequate facilities and services to a group of people with severe and profound intellectual disability living in the John Paul Centre in Galway. This centre has for many years been run under the auspices of the Brothers of Charity.
The Irish Human Rights Commission undertook the inquiry on foot of a request from a group of parents of adults who were living in the centre. The parents contended that a lack of therapeutic interventions from the multidisciplinary team had led to a regime in which there was a deterioration in the physical and mental health of their (adult) children. This deterioration had in turn led to an increase in accidents and incidents in the centre, as well as an increase in the use of medication as a means of control.
The 400-page report comprehensively details the legal and historical background to the enquiry, as well as the factors and influences that have impacted on the centre since it opened in 1980- The report makes the point that the legal entitlement to a certain level of service remains unclear, despite the enactment of the Disability Act of 2005. The report also shows the vague, unquantified nature of the service level agreement that determined what services the Brothers of Charity had agreed to provide in exchange for the €9,000,000 funding that they received. A useful insight is provided into the impressive lack of quality controls that accompanies the handing over of such a large amount of money. It begs the question whether such lax practices apply across the whole intellectual disability sector? And, if they do, it suggests that service providers are given little incentive to raise quality standards as long as the HSE does not demand that they do so.
Personal outcome plans which each of the service users in the centre possessed are put under the microscope by the report. They conclude that the plans were implemented in a variable manner, some being thoroughly applied and others less so. Interestingly the ‘Council for Quality Leadership’ which accredited the centre after auditing it in June of 2009, found that the personal outcome plans were being implemented at a satisfactory level, a conclusion with which the IHRC did not agree.
In contrast, the move of some service users to community is documented clearly and the dilemmas that accompany such moves are enunciated sympathetically and both sides of the argument are presented in the report.
The difficulties that the parents of the service users had in meaningfully communicating with the service are baldly stated. However, the report also indicates that there were good relationships between parents and frontline staff.
In all of the report, the issue of under.funding of the service runs like a mother lode. The service cannot employ sufficient or appropriate staff due to under.funding from the HSE, and the washing their hands of the question of how to provide care and support to service users that is of a high quality and which they would like.
The report describes the legal and human rights context at length and concludes that accountability in service provision was lacking, there was overcrowding and a poor standard of accommodation, the centre was historically understaffed and staff who cared for service users with challenging behaviour were not properly supported.
The overall impression is that frontline staff worked hard and as best as they could to provide good care in a setting which was poorly managed and where, despite accreditation to an external agency, a culture of excellence was absent. Furthermore, there is a strong sense that as long as nothing came to the attention of the HSE, then it was satisfied—in other words, that the HSE did not demand a quality service.
The Commission makes detailed recommendations regarding the issues that it raises; these refer to the Brothers of Charity, the HSE, the parents and the Departments of Health and Education. These recommendations will go much of the way to addressing the issues raised in the report.
On reflection, the report left this reader with two concerns: how many other services are like this one? And, secondly, although money is important, it is too often not the answer to the provision of high-quality care and support. What is important is that each centre of care provision should be permeated by a culture which values the needs of the individual above those of the service and which is genuinely open to change and improvement, particularly when the parents and advocates of people with severe and profound intellectual disability say ‘hold on, you are not providing for our son or daughter as good a service as they deserve.’
The report is available at http://www.ihrc.ie /_fileupload/documentlogos/ReportE3.pdf.

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