Despite the fact that over 9,000 people are availing of residential disability services in this country, there is no oversight of the standard of care being provided to any person. With this in mind, on 17 October, the Health Information and Quality Authority launched the draft national standards for residential centres for people with disabilities. These standards describe the essential elements of quality and safety that both children and adults who use these services have a right to expect. This article explores the impact that the draft standards will have on the provision of appropriate and high-quality residential care for people with a disability.
It is important to put the issue of regulation and standard-setting in healthcare in context. In the last decade alone in Ireland there have been numerous examples of bad practice, resulting in enquiries or reports that have raised serious concerns regarding the workings of the healthcare sector (e.g. the Clark enquiry into peripartum hysterectomy at Our Lady of Lourdes Hospital and reports into aspects of care in Mallow and Tallaght Hospitals (Clark 2006; HIQA 2011b, 2012b).
In relation to the disability sector, a recent shocking case occurred in the UK when eleven former staff at the Winterbourne View hospital in Bristol (for adults with autism and learning difficulties) pleaded guilty to beating patients, dousing them in water and encouraging some to consider suicide (Hennessy 2012). Following the concerns highlighted at Winterbourne (an English private hospital group owned by Irish investors), the Care Quality Commission carried out a programme of unannounced inspections of services providing care for people with learning disabilities and challenging behaviours. The results from the 150 inspections showed that 69 failed to meet standards relating to care and personal safety. Many of the shortcomings were a direct result of care that was not centred on the individual or tailored to their needs (Care Quality Commission 2011).
These examples from the Irish healthcare system and disability sector itself highlight the need for a regulatory environment of quality and safety standards designed to protect the rights of people who use services, particularly the most vulnerable and disadvantaged (Adil 2008).
What are these new standards?
The Draft National Standards for Residential Centres for People with Disabilities (the Standards) are standards to be applied by HIQA (2012a). The standards consist of eight main components, known as themes. Each theme identifies the key topics for quality and safety which are addressed by the standards. The eight themes are person-centred services/child-centred services, effective services, safe services, health and development, leadership, governance and management, use of resources, workforce, use of information.
These themes are divided into 31 individual standards for children and 31 individual standards for adults. Each standard consists of:
• standard statement which describes the high-level outcome required to deliver quality residential services and residential respite services for adults and children
• criteria that, taken together, will enable progress towards achieving the standard
• features under each standard statement which give examples of what the residential centre may consider in order to meet the standard and achieve the required outcome.
Who or what is HIQA?
HIQA was established by the Health Act of 2007, with the object of promoting safety and quality in the provision of health and personal social services for the benefit of the health and welfare of the public. HIQA has a number of statutory functions including:
• to set standards on safety and quality in relation to services provided by the Health Services Executive,
• to monitor compliance with the standards,
• to undertake investigations,
• to operate accreditation programmes, and
• to evaluate the clinical and cost effectiveness of health technologies.
HIQA is perhaps best known for its thematic reviews of particular kinds of healthcare and service provision in nursing homes and also for its unannounced visits in relation to hygiene in acute public hospitals. However, HIQA’s remit also extends to investigations of services where there are reasonable grounds for believing there is a serious risk to the health and welfare of a person receiving those services (under Section 9 of the Health Act 2007). The investigation related to the care given to Mrs Rebecca O’Malley and the pathology services in CUH and Limerick Regional Hospital are an example (HIQA 2008).
To whom will these standards apply?
The HIQA standards will apply to services provided by all types of service providers whether public bodies, private organisations or voluntary agencies. They will apply to all residential care services for children and adults with disabilities, including:
• congregated services and institutions,
• group homes, and
• community houses.
HIQA as regulator
A HIQA inspection in relation to these standards will most likely consist of
• meeting with residents and relatives,
• observing the day-to-day routines and activities,
• talking to staff about their understanding of the care they deliver,
• checking premises and equipment to ensure they are safe and promote the wellbeing of residents, and
• reviewing key records and relevant documentation.
HIQA will also have enforcement powers following an inspection, so the implications for healthcare providers are significant. For example, in relation to other designated centres there are two main enforcement measures:
1. Non-statutory enforcement action which can consist of
Inspection report: The inspection report will clearly set out any improvements required, and timescales for compliance.
Agreed action plan: The registered provider may be requested to submit an action plan with timescales. The action plan will address the improvements required in the inspection report.
Warning letter: A warning letter outlining the issues that the registered provider needs to address. It will give a set date by which the issues must be addressed if statutory enforcement is not to be pursued.
2. Statutory enforcement action which can include:
Prosecution (Health Act 2007 section 59)
Cancellation of registration (Health Act 2007 section 51(1)).
During 2011, HIQA inspectors carried out 769 inspection visits to designated residential centres for older people to assess whether the level of service met the needs of the residents. Six centres were closed as a result of enforcement action taken by the Authority (HIQA 2011a). They were closed because inspectors had reasonable grounds to believe that there were serious risks to the health and welfare of residents, or that there was a substantial and significant breach of the regulations as a result of a provider failing in its duty to safeguard residents.
A number of features of HIQA as regulator are worth comment (Hamblin 2008).
First of all, its reporting arrangements are designed to ensure independence because it reports directly to the Minister for Health, and not to the Department of Health or the HSE. The second feature is that unlike private accreditation systems (e.g. Joint Commission International (JCI)), HIQA does not have any commercial imperative to implement the standards and is not reliant on the services it is monitoring to provide an income stream. The third feature is that HIQA will have a dual role, in that it has responsibility for setting the standards and it is also the organisation that will inspect against the standards. It has been observed that this dual role may risk a conflict of interest by, for example, influencing decisions about standards compliance (Australian Commission on Quality and Safety in Health Care, 2007).
Implications for service providers
Although services for people with disabilities are not as yet regulated or inspected by the HIQA, the Authority received 22 concerns in relation to services for people with disabilities in 2011. This would re-enforce the need for standards and regulation of this area.
Voluntary (or not-for-profit) disability service providers provide the majority of Irish disability services (90% of intellectual disability and 60% of physical/sensory disability services), with the remainder largely provided directly by the HSE. Of the approximately 53,000 people availing of, or waiting for, specialist disability services, just under 9000 (17%) are in disability residential services. If the HIQA standards are finalised, the practical implication is that these service providers will have to provide real evidence to show compliance with the standards. For each of the eight themes in the standards, illustrative examples of steps service providers may take towards meeting the standard are provided, but it will be very much left up to each organisation to provide the evidence of compliance with the standard. In practical terms, this will require the service to provide reviewing and articulating:
• what structures they have in place,
• what processes they have in place (policies, procedures and guidelines etc), and
• outcome indicators (audits, annual reviews, implementing reports, best practice).
How will service providers do this? There is no set methodology of reviewing structures, processes and outcomes. Depending on the size of the residential centre each ‘theme’ of the standards could be reviewed by a multidisciplinary team representative of all staff and service users. Alternatively, the themes could be assigned to smaller subgroups within the service who could feed back to an overall supervisory group who would coordinate the review of the service. What can be said for certain is that this will generate large amounts of data to be collated, compiled and reviewed with associated time and resource implications for service providers. For the moment, the standards are in draft format with feedback being requested from HIQA. It is recommended that the standards are studied carefully by service providers, staff and service users and any comments sent to HIQA. Service providers are caring for the most vulnerable individuals in our society and there is an ongoing responsibility on them to make sure that quality assurance systems are in place.