Has Regulation of Residential Settings Improved The Standards and Quality of Life of People with Disabilities? A provisional view

Joe Wolfe takes a critical look at the effects of a more stringent approach to the application of standards and regulation in services for people with intellectual disabilities.

This paper focusses on 4 specific areas, notably standards in services, opportunities for social participation, safety and health. The second part of this paper will address quality of life, person-centredness and opportunities for new experiences.
Introduction / background

The Health Information and Quality Authority (HIQA) is the statutory authority with responsibility for registering and inspecting residential services for people with disabilities in Ireland. The regulations for residential services were enacted in 2013. Inspections have commenced with a number of services having undergone registration inspections, while some have had monitoring inspections and others have undergone both types of inspection.

This paper provides a preliminary view as to whether regulation has improved (a) the standards and (b) the quality of life of people with disabilities. It is based on a survey of 50 providers and quality coordinators of services. In addition to this, the author asked residents to give their views of the impact of regulation; however, only 1 person chose to give their view.

This paper focusses on 4 specific areas, notably standards in services, opportunities for social participation, safety and health. The second part of this paper will address quality of life, person-centredness and opportunities for new experiences.

Results 

A total of 28 questionnaires were returned from the 50 providers / quality coordinators, which represents a response rate of 56%. Responses were received from small, medium and large sized services, who between them provide residential and respite service to in excess of 4000 people nationally.

Limitations to this paper

This paper is a provisional viewpoint on whether regulation has improved the standards and quality of life of people with disabilities in residential services. It represents the views of Service Providers mainly, and the author’s view. It only reflects the view of one service user. Clearly, more detailed analysis and research, over a longer timeframe, is required to answer the title question in a more comprehensive manner.

Findings

1. Has regulation improved the standards in services?
24 of the 28 respondents stated that the introduction of regulation has improved the standards in services. 21 of these responses stated categorically that regulation has improved standards, while 3 of the 24 qualified their responses. Key themes that emerged from the comments made with regard to this question were: –

  • That regulation has enforced the implementation of policies, systems and processes and has standardised these;
  • That it has improved documentation in care plans, person-centred plans and other records;
  • That it has increased the awareness of the standards required from staff at all levels;
  • That it has resulted in increased compliance in relation to risk registers, fire registers, health and safety, staff training, fire drills and audit;
  • That it has forced a speedy response to change and improvements that were required in services, but which were not necessarily happening prior to regulation (in a sense that it has facilitated change).

Further comments made by respondents included

  • That poor practice is being exposed and institutions are being eroded;
  • That it has supported the service to ensure continuity of care in the event that regular staff are not on duty (i.e. that regulations are being enforced with rigour, regardless of which staff are on duty).

Interestingly, one respondent stated that it has resulted in a mirror being shone on the service practices and that they have benefited from this.

On the negative side, the strongest theme that emerged was that staff are spending considerably more time on documentation, to ensure that they can demonstrate compliance with the regulations and that this can have a negative and detrimental impact on their availability to service users. What is significant here, is that many services have had cumulative budget cuts of up to 20% over the last 4-5 years. When you combine considerable reductions in staffing as a result of these budget cuts with staff spending increasing time on documentation and recording, it can only be deleterious on staff time with residents.

A further theme identified was that while regulation has improved standards in general, there may be too much emphasis on safety, thereby negatively impacting on the rights of service users.

The one resident that responded to the questionnaire stated that the standard of service provided  has not improved -“that it was always good”, that their privacy is very important to him/her and that “HIQA has too many rights to my information”.

2. Has regulation improved resident’s opportunities for social participation?
16 of the 28 respondents stated that the introduction of regulation has not improved residents’ opportunities for social participation, while 12 stated that it has. Key themes that emerged from the comments made with regard to this question were: –

  • Of those that stated that regulation has not increased opportunities for social participation, many stated that the regulator is emphasising safety and that social participation has received little emphasis by inspectors. Some respondents also spoke of an emphasis on bureaucracy with a consequent reduction in opportunities for social participation;
  • Conversely, other respondents stated that there has been an emphasis from their inspectors on social participation and that there have been improvements in opportunities as a result;
  • Diversity in the responses was very evident. Some respondents stated that residents have less opportunities as staff are spending so much time on paperwork. Others stated that people with significant needs now have more social opportunities due to the insistence of inspectors. Finally, others stated that inspectors are not focusing on social opportunities;
  • Two respondents acknowledged that residents are going into the community more, but questioned whether there is any actual increase in social participation within the community.

The one resident that responded to the questionnaire stated that regulation has improved his/her opportunities for social participation as he/she now has a support staff to enable more choice.

3. Are residents safer as a result of regulation?
A total of 21 of the 28 respondents stated that residents are safer as a result of regulation. There were a number of key themes that emerged from the responses: –

  • A considerable number of respondents spoke of the introduction of risk assessments and continual review and monitoring of these – also of improvements with regard to fire safety, and of the introduction of internal audits;
  • Some respondents highlighted the benefits of increased monitoring and scrutiny. Examples given included reductions in restrictive practices, monitoring of incidents and linking risk assessments to service improvements;
  • A strong theme that emerged was that residents with limited verbal communication were, and still are, particularly vulnerable both in large and small settings, and that recent media coverage of a particular service illustrates this continued vulnerability, despite regulation;
  • A number of respondents expanded on the fact that the focus of regulation is predominantly centred on policies, procedures, systems and safety and not on treating people equally and quality of life;
  • A number of respondents stated the level of safety is the same as it was pre-regulation, but that considerable time is now required to report incidents to HIQA, through the notifiable events process.

The one resident that responded to the questionnaire stated that there is no difference in how safe he/she is as a result of regulation as he/she has always felt safe in the service.

4. Has regulation improved residents opportunities to achieve the best possible health
Of the 28 respondents, 17 stated that regulation has improved residents opportunities to achieve best possible health, while 11 stated that it has not. Of the latter, 3 respondents stated that the service had a focus on this prior to regulation, and that therefore this was an area where standards were always met. Two of these 3 respondents stated that their documentation of practice in this area has, however, improved.

The main themes that emerged with regard to this question is that since the introduction of regulations, residents have better access to health care; better access to multidisciplinary supports; better access to health screening and follow-up; and more of a focus on health plans.

The one resident that responded to the questionnaire stated the regulations have not improved his/her opportunities to achieve best possible health but that “there are lots of records on my medical condition”.

Conclusion

We are still less than 18 months into the registration and inspection process and it is difficult to have definitive findings with regard to the impact and outcomes of regulation at this point. This survey has illustrated that of those that responded, more are of the view that services are safer, that standards have improved and that achieving best possible health has been enhanced, as a result of regulation. This, however, is not a universal view.

In this survey, more respondents are of the view that regulation has not improved opportunities for social participation.

From our experience in the area of regulation and regulatory compliance, the overwhelming focus thus far has been on safety, with many monitoring inspections testing the core safety outcomes. This is to be expected in the early stages of the implementation of a regulatory process and it could be argued that this has to be the prioritised starting point, with a gradual progression to focusing on other areas. It is evident that some inspections, and in particular registration inspections, are testing more than just safety and are looking at choice, opportunities and quality of life. It will be interesting to see if these important areas receive more attention from inspectors as further registration inspections occur and as the registration of services progresses over the coming years.

Points that must be noted and given due consideration, are that (i) services and staff have to spend significantly increased time on documentation, and (ii) services are incurring substantial costs on ensuring compliance, particularly but not exclusively with regard to environmental adaptations, fire safety, staffing levels and training. One cannot argue that this compliance is unnecessary. Safety has to be a priority and there are too many examples of substantial service failures and negative outcomes for service users where safe services were not provided. However, these requirements are now statutory requirements – they are required in the context of successive and substantial budget cuts to services, and this has to be considered and addressed.

Areas for further exploration

There is clearly a need to evaluate the impact of regulation in a much more substantial manner,  over a longer period of time. There is also a need to ascertain the views of other stakeholders on the impact of regulation, including (most importantly) residents themselves, families, staff and representative groups.

Author Bio

Joe Wolfe (MSc, R.N.I.D, R.P.N, C.A.Q.A)  is C.E.O. of The Wolfe Group, which specialises in regulatory compliance and organisational improvement.  Joe was external consultant to the National Disability Authority on the development of the first draft National Standards.  He is currently completing a Doctorate in Governance, with a particular focus on Governance and Regulation.

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