On 1 November last year, the Minister for Health signed the Care & Support of Residents in Designated Centres for Persons (Children & Adults) with Disabilities Regulations into law (Statutory Instrument No.366 of 2013). This enabled HIQA inspectors to call unannounced at any time to a house or institution where individuals with a disability lived and were supported by a service provider receiving public funding—unless they had a ‘real and meaningful’ individual tenancy arrangement. The HIQA inspector could inspect the building and the service provided against each of the 32 Regulations that range from multidisciplinary assessments to visiting arrangements, and from risk management procedures to record keeping. Indeed there is a huge emphasis on documentation, generally considered by HIQA to be the only reliable form of evidence of what happens in the house or centre.
HIQA also introduced it own vocabulary of terms. The place where you live is called a ‘designated centre’, which may be a single apartment or a house or some larger building, or a grouping of these.
The document which gives a detailed description of the services provided is called the ‘statement of purpose’. The manager with direct responsibility for the designated centre is called the Person-in-Charge (PIC for short). The ‘directory of residents’ is the file or files on each person including personal details, all medical records, records of any restraints used, files relating to any incidents of abuse or harm, details of specialist communication needs, records of monies or valuables that the service is minding, or furniture bought by the person.
The Regulations include five appendices setting out what is to be included in (1) the statement of purpose; (2) the records to be kept in relation to all staff; (3) the individual records on each person living there; (4) a range of other files relating to charges, food, complaints, easy-read documents, and people moving on from the house; and (5) the 21 policies and procedures required by HIQA. It is probably safe to say that the level of documentation required by HIQA far exceeded what any disability service provider had already in place. In addition, the existing documentation rarely coincided with what the Regulations set out. This meant an immediate requirement to restructure all existing files and frequently to generate new files.
The introduction of the Regulations also required a strong focus on staff orientation and training, as even the newest relief staff member must be familiar with all HIQA documentation including policies, and able to demonstrate this to an inspector. In addition, all of the new forms require constant inputting and updating.
The service provider must report the occurrence of any of eight events to HIQA within three working days, a further six events in a quarterly report to HIQA, undertake unannounced internal inspections at least every six months, and keep the results on file for HIQA.
For a ‘designated centre’ to be registered with HIQA, significant additional documentation must be submitted in advance of the registration visit when the service is assessed against 18 HIQA ‘outcomes’ that relate to all of the Regulations. This whole process takes a minimum of three months, and is repeated every three years.
Background to the Regulations
The need for residential standards had been highlighted for some years, particularly by parent and family groups who often felt powerless when raising concerns with service providers. Inclusion Ireland published an early set of Standards (authored by the current editor of Frontline) in the 1990s. Subsequently the Eastern Regional Health Authority developed the first draft standards for residential services; later the National Disability Authority (NDA) developed draft standards for all disability services (for which they had a statutory remit), but this was then passed to HIQA when they were established. For the past six years HIQA consulted with stakeholders and developed draft National Standards, culminating in the published 2009 National Standards. These were expected to be implemented at that time, but government funding was not forthcoming to recruit the necessary inspectors.
The National Standards were then revised in 2013 to match HIQA’s Better, Safer Healthcare framework document, creating a common HIQA framework to all its standards work. For many professionals, this implied a one-size-fits-all approach which failed to acknowledge the emerging individualised approach to supporting people with disabilities in their living arrangements.
While HIQA were responsible for developing the National Standards, the Department of Health itself developed the Regulations. The Regulations were developed after the Standards, but the match between the two is not as clear as it might be. For the moment, HIQA inspections focus on the Regulations and all criticisms of services are referred to as breaches of specific Regulations.
Strengths of the Regulations
The introduction of the Regulations and the subsequent inspections have highlighted shortcomings and lapses in service provision, particularly in the important areas of safety and risk management, and general record-keeping. Typically systems in human services reach about 80-85% implementation—and that is where there is strong management support—but with external inspectors, that figure will get much closer to 100%. In addition the HIQA Regulations have the force of law, with the risk of negative inspection reports, followed-up by unannounced inspections and further negative reports. HIQA can impose restrictions on the service provider, and can bring the service provider to court to have the centre closed down—as they have done with a handful of nursing homes.
In practice, the fact that all inspection reports are published on the HIQA website is the most effective penalty for service providers who rely on community support for many of their activities.
It is inevitable that the introduction of a new regulatory system would throw up more than a few problems. Many of these issues are of a minor if irritating nature. But the publication and implementation of the new regulations have raised more fundamental issues which might be summed up in the following questions:
■ What service model do the Regulations espouse?
■ Is the Regulation-service in line with general government policy?
■ Are there situations where the Regulations have a negative impact on people’s lives?
■ What standard are the individual Regulations based on?
■ Are HIQA inspectors consistent in their approach and are the inspection reports fair?
The HIQA service model?
The most significant criticism of the HIQA Standards is that they are so closely aligned to the standards developed for the nursing homes. In other words, the model of service they imply is that of a nursing home, where a large number of elderly people are housed in one building, often in isolated areas, and where the main concern is with fire safety, poor quality food, control of medicines, lack of privacy, restrictions on visitors, and so on.
While many of these are concerns for some people with disabilities, most disability services are not end-of-life services; they are actually focused on supporting the person live the life of their choosing in the community. For some people this means having their own place with minimum support; for others constant staff support is needed. But controlling your own life, being part of the local community, and choosing where and with whom you live are not a major focus in the new Regulations. It is as if the HIQA Regulations, while focusing on the details, miss the bigger picture—a worthwhile life in the community.
Consistent with government policy?
There is not a strong link between the Regulations and current government policy as set out in the Congregate Settings report, the draft Capacity legislation, the UN Declaration on the Rights of Persons with Disabilities (which Ireland signed), and the Value for Money & Policy Review report. The Regulations make no reference to the numbers of people living together, or whether people chose to live there, or their right to be a part of the local community. It would appear that it is easier to meet many of the regulations in a larger centre, given the constant presence of managers and senior staff, the higher level of fire precautions, the HACCP-compliant kitchens, the presence of multidisciplinary teams, etc. It may be that HIQA will make some allowances for individualised living arrangements, but there is no reference to that in the Regulations—the word ‘proportionate’ does not appear anywhere.
At present, there is intensive training for families and staff in individualised approaches run by Inclusion Ireland, LEAP, Clann Beo, the National Federation of Voluntary Bodies, Down Syndrome Ireland, and individual services providers. How much more powerful these initiatives would be if they were reinforced by the Regulations.
A negative impact on people’s lives?
There are a few situations where the Regulations are having an immediate negative impact on people’s lives, simply because of the inflexibility of the Regulations. This is primarily because of the 3-month delay in registering a new house or apartment. So if a house needs renovation, the temporary rented house must be registered, may need fire doors and fire-protected corridors, emergency lighting installed, before people can move out; the rented house may then need to be restored to the way it was, after the renovation work is complete. Similar issues may arise where someone needs emergency accommodation due to family illness or bereavement.
The standard for the Regulations?
There is no clear reference point for the regulations as a whole. What level of fire safety, hygiene precautions, risk management, infection control, individual assessment … is enough? Is it the level that would apply in an acute hospital? A nursing home? Most disability-related quality systems set the bar as ‘at least what others living in this community would expect’. The Regulations have no reference point on this. This is likely to lead to some variation among individual inspectors.
Are inspectors consistent and fair?
As you might expect with the introduction of a new inspection regime, there have been inconsistencies in inspections. A review of the published inspectors reports (see HIQA website) shows that similar breaches of the Regulations may be rated ‘major’ or ‘moderate’, depending on the inspector.
HIQA offer service providers an opportunity to submit factual errors following issue of the draft inspector’s report. However, HIQA are free to accept or ignore these corrections without explanation.
At the start of this article, I mentioned the risk of reputational damage to service providers through the publication of negative reports, particularly if these reports are picked up by local or national media. There is a more specific risk to the reputation of the person in charge (PIC) who is named at the beginning of the report. A Google search of a future job applicant will throw up such negative reports, where the PIC had little or no control over aspects such as suitability of premises, access to multidisciplinary assessments, or adequate governance arrangements.
It is without question that the introduction of the HIQA Regulations has been a positive development, and one that most people felt was long overdue. But I would suggest that the regulations themselves need to be somewhat re-focused to align better with current government policy and with the substantial efforts being made by parent/family organisations and service providers to develop a more individualised approach to supporting individuals with intellectual disability in their living arrangements.
Finally, the introduction of the Regulations is not the silver bullet to remedy the limitations of the services currently offered to people with disabilities. The presence of HIQA will not automatically mean an end to scandals in the disability world, as the Winterbourne scandal in the UK illustrates.
At best, the Regulations can only address ‘what it says on the tin’. It will not give families more control over funding or more say in the day-to-day running of the service. Advocacy and self-advocacy are as important as ever.