«National Disability Summit 9 April 2015 I welcome the opportunity to speak to you as a group of service providers of residential services from a ...»
Speaking notes, Phelim Quinn, CEO of HIQA
National Disability Summit 9 April 2015
I welcome the opportunity to speak to you as a group of service providers of
residential services from a regulator’s perspective, and acknowledging that this
second summit is organised in the continuing aftermath of the Prime Time
investigation on Áras Attracta and in the context of the HSE’s six-point plan launched
at the social care summit in December 2014.
I believe that the broadcasting of that programme was a seminal event in how the public view the current provision and regulation of residential services delivered to adults and children with a disability.
I want to use this opportunity to convey to you what HIQA’s experience has been in the last 18 months since the commencement of regulation of the services in November 2013. More particularly I want to say something about our findings in some services in recent weeks and months following the broadcast of the programme.
I also want to share with you my thoughts on some approaches that HIQA and possibly you as service providers could take when trying to improve the quality and safety of services and the experience of those living in designated centres. I believe that some of my suggestions resonate in some way with core elements of the sixpoint plan.
The regulation of residential services for children and adults with a disability was universally welcomed across the full range of stakeholders and sectors.
From a political perspective, it realised a long-term goal of Government to cement its commitment to the protection of some of the most vulnerable in Irish society. It also enabled an independent third-party assessment of how far along the policy journey towards the provision of equitable modern services that providers had travelled. The regulation of services put in place for the first time regulations and standards as an accountability framework against which service providers could assess themselves as well as be assessed. The regulations also set out a clear set of sanctions and consequences for those who were significantly or persistently non-compliant with those regulations and standards, or those who were putting the safety, health and welfare of service users at risk.
From a service provider’s perspective, the introduction was lauded as an opportunity to more formally demonstrate to the regulator and through published reports to the public how well the sector was performing against the standards and how historical engagement in accreditation schemes had demonstrated an improvement journey for many services. It was seen as the first formal legal test that enabled providers to demonstrate how well they were supporting people with a disability. It was also acknowledged at that stage that this was a service sector not previously regulated in any way and that the sector would find the concept of regulation a challenging one.
More importantly from a service-user and relative perspective, the introduction of regulation was seen as a mechanism by which an additional layer of protection and safeguards could be afforded to those in receipt of residential services.
The introduction of regulation in this regard was also welcomed from an advocacy and human rights perspective, with the regulations – but more particularly the
standards – putting at their heart a range of rights based principles namely:
provision of care and support aimed at promoting autonomy and equality of life person-centredness and the promotion of dignity and respect for service users safety and protection and upholding equal rights for a vulnerable group.
In talking about these services, more particularly based on our experience as a regulator in recent weeks and months, it would be easy for me to focus on what could be characterised as an increasingly depressing picture. I believe that would be unfair and would not take account of the totality of our experience. I would want to say at the outset that we have seen and assessed excellent examples of progressive services that providers and Ireland should be rightly proud of.
In the main, these sorts of services – that we have assessed as significantly compliant – have also embraced the vision set out in the HSE’s 2011 report, Time to Move on from Congregated Settings: A Strategy for Community Inclusion. This report came after a range of other strategy documents stretching back as far as 1990 when the State recognised the need to move away from the sorts of institutional services that had been developed historically across the country.
At this stage, we have now registered over 100 compliant services. The characteristics of some of these services that we have inspected and registered at
this stage have or are moving towards characteristics such as:
choice for service users the promotion of independence inclusion of residents in decision-making about their home and the way they want to live their lives self-determination and fulfilment – all characteristics outlined within the national standards.
These services acknowledge the need for those using services as requiring care and support to help them realise their needs to truly integrate into local communities.
Such services need to be acknowledged and commended for the strides and developments they have made in recent years.
However, in preparing for today, I reflected on a number of live issues that we within HIQA are dealing with as a regulator. At the same time, I looked to other places to see what they are saying and doing in respect of services for people with disabilities.
In a report published by Mencap in England in 2012 on housing for people with intellectual disability, Mark Goldring, its CEO, writes in the foreword of the report that “less than half a century ago people with a learning disability were locked away”. He goes on to say that they lived in large institutions resembling old hospital wards or prison wings. “Thankfully the last of these types of services closed in 2009.” Whilst the vision in Ireland is to move us away from such circumstances, HIQA’s experience in recent weeks and months has been that significant numbers of children and adults, vulnerable service users, continue to be accommodated in large congregated settings, their circumstances similar to those outlined in that Mencap report. Whilst issues around this sort of environment is in itself a continuing cause for concern, the fact that the culture, care and support for people living in these settings can at times only be described as regressive and archaic is even more worrying. This given the general acceptance by providers that the sort of service characteristics set out within the congregated settings report and in the national standards set out a clear picture of how these services should operate in the 21st Century.
It is disturbing and chilling to have to say that the sorts of issues we have seen in recent weeks and months resonate with care practices and culture that were thought to have been confined to the past and not in line with best practice in the care and support for children and adults with intellectual disabilities. Our recent inspection findings across differing provider organisations indicate fundamental breaches in regulations and standards but more strikingly in the human rights of individuals. They most definitely run contrary to the UN Convention on the Rights of People with a Disability. These examples exist in services provided in the public, voluntary and private sectors.
Some examples of the sorts of issues we have found include:
restriction of or inattention to the nutrition and hydration needs of vulnerable service users residents experiencing extended periods of time without access to fresh air inappropriate and at times dangerous use of physical restraints – in some instances the practices being used were not evidence based, and staff were not trained in the use of such interventions, despite the fact that residents had the potential to display behaviours that challenge, puttings themselves and others at risk of harm.
restriction of movement and liberty of individuals within centres even when those individuals were not subject of legal orders or processes failure to act appropriately or to intervene in circumstances of peer-on-peer abuse and assault, therefore failing to maintain the safety of residents unsafe manual handling practices of highly dependent residents with limited mobility – in one instance the transport of a resident from one area of the centre to another using a hoist due to the inappropriate environment within which the resident was being accommodated lack of basic privacy and dignity manifested through the absence of or limited screening of residents in dormitory accommodation or at times in toilet or wash areas lack of personalisation of residents’ private living or bed space – accommodation in large impersonal dormitory accommodation failure to meet the basic healthcare needs that support and maintain resident health and wellbeing failure to adopt and implement the national policy on safeguarding vulnerable adults – failure to provide training to staff and failure to assess staff understanding of the policy.
These circumstances that our inspectors have seen do not exist in one or two centres, but exist in a significant cluster of centres, mainly based in long-established congregated settings on in accommodation on the campus of such services.
In a number of these instances, it appears that senior managers within provider organisations – 18 months after the commencement of regulation – appear not to be aware of the circumstances and cultures existing within their organisations. In a significant number of the circumstances that I have outlined, staff have practised and interacted with residents in these ways even in the presence of inspectors. This is indicative of a culture so engrained that some staff appear not to be able to distinguish between what is an acceptable and unacceptable standard of care.
All of these issues have been seen in inspections carried out by HIQA since we all became aware of the circumstances in Áras Attracta. I believe that all of these circumstances are indicative of breaches in individual resident’s human rights. As CEO of HIQA and in my role as Chief Inspector, I believe that I am duty bound to act in line with the powers set out in legislation to protect vulnerable service users and to effect change and improvements through legal processes available to HIQA in the Health Act.
At the outset of regulation, we would acknowledge that the speed at which the HSE would be able to fund and give effect to the congregated settings report was much slower than anticipated. Fiscal circumstances in recent years have further slowed progress. To some extent we would also acknowledge that the introduction of the regulation of residential services happened at a time when some services from an environmental perspective were below what might be expected in 21st Century service provision. However, affording children and adults living in residential care a service that meets basic human rights is unavoidable in line with domestic legislation as well as European and international conventions.
So how do we effect improvement within those services that are underperforming against the national standards and regulations?
As I outlined earlier, service providers at the outset of regulation stated that they had already been engaged in accreditation schemes. All service providers must start to regard the regulations and standards as a framework for the good governance of services.
Regulation 23(2) of the regulations call for providers of service to make an unannounced visit of the service at least once every six months or more frequently as determined by the Chief Inspector and that the provider would prepare a written report on the quality and safety of care and support provided within the centre and put a plan in place to address any concerns regarding the care and support.
In this instance, the quality and safety of services is primarily reflected in service standards. How often does each of you as providers conduct such an assessment of the services you provide? If – and when you do – how robust is that assessment?
What tools do you use to measure it?