Maura O’Loughlin is a senior manager with Sunbeam House Services in County Wicklow.
Here she talks about HIQA and the effects of regulation over the past few years.
Support services for people with disabilities have focused a significant amount of time, energy, and resources, over the past 16 months adjusting to a regulatory environment. The Health Information & Quality Authority (HIQA) has been inspecting services for people with disabilities since November 2013. All agencies must be registered within a three-year timeframe that commenced in 2013.
The oversight function of an independent body is something that has been campaigned for by numerous service providers and advocacy organisations for many years, and the commencement of the inspection process has been largely welcomed by those who are charged with providing supports to people with disabilities. The inspection focus to date has been on agencies’ compliance with the regulations of the Health Act; however the link between the regulations, Government policy and international best practice is not clearly evident.
Sixteen months into the inspection regime, we have an opportunity to begin to reflect on the issues of regulation, compliance and quality.
Regulation is defined as “a rule or directive made by an authority”.
Compliance is defined as “the action or act of complying with a wish or command”.
Quality is defined as “the standard of something as measured against other things of a similar kind: the degree of excellence of something”.
Does regulation offer a command and control oversight function, or an intervention that can improve the quality of lives of people with disabilities?
In order to reflect on this issue we must firstly reflect on the basic human rights of all people.
Ireland has signed but not yet ratified the CRPD (The United Nations Convention on the Rights of Persons with Disabilities). Signing the treaty is seen as an expression of intention to comply with it; ratification officially binds a state to the treaty.
Article 19 of the CRPD states the following:
“States Parties to the present Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:
a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;
b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;
c) Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.”
(UNCRPD, 2006 Article 19)
Do people with disabilities currently have choices equal to all others?
Being subject to inspection can create intrusive changes in people’s living environment that are not part of ordinary domestic life, e.g. complaints policies must be displayed in a prominent position. Some people living in their own homes may not like to have it referred to as a designated centre; others may have difficulty with the signing of a visitors’ book; some may be very uncomfortable with strangers checking out their routines, personal finances and household cleanliness (indeed this would be a challenge for most people in their own homes).
The administrative burden placed on service providers by the commencement of inspections has been one of the biggest challenges for organisations, with already limited resources and over-stretched staff, and can impact on the provision of choices and activities to those who use the services. Very often service providers are also requested to make improvements to their locations that can have significant resource implications and funders cannot meet the demands. This can lead to a “meat in the sandwich” experience for agencies in trying to meet the demands of funders and regulators. Governance and accountability expectations are increasing in all areas of health & social care nationally, and coinciding with the commencement of a regulatory inspection process are the changing expectations of funders. HSE service level agreements now stipulate that all agencies in receipt of 3 million Euros or more of public funding must employ an internationally recognised quality improvement methodology such as EFQM, CQL, CARF or PQASSO.
In effect this may mean that people’s lives are subject to HIQA inspections, Quality improvement reviews, internal audit, and a whole plethora of initiatives that work independently of each other.
While the Inspectors appointed by HIQA are experienced respectful professionals and have a good understanding of the challenges faced by providers, the tensions that are caused by the inspection regime can be very challenging for both service users and staff. While acknowledging those tensions it is recognised that considerable benefits have arisen from the inspection process. Staff members that have participated in the inspection process have commented on the very useful feedback that they have received from inspectors. Accountability has become more clearly defined as a result of the inspection process. Practices that clearly devalue or put people at risk have been aggressively addressed in HIQA inspections. Staff training and consumer feedback have been actively supported. From a systems planning perspective, inspection reports and action plans can ensure that agreed priorities are met in a timely fashion.
All stakeholders involved in supporting vulnerable people will agree that safeguarding & protection are fundamental aspects of any support service and cannot be compromised under any circumstances. The challenge now, is how this can be achieved whilst supporting people’s equality, uniqueness, & independence.
The balance between focusing on a compliance and rule-enforcement approach to quality and following a continuous improvement model needs to be addressed in a holistic manner.
In the absence of any statutory quality standards in Ireland in recent years, the focus for many providers of supports and services for people with disabilities has been on a self-imposed Quality improvement journey. These agencies have collaborated and partnered with independent accreditation bodies often from America or the UK to review the quality of the supports that they provide to people with disabilities and their families.
These partnerships have succeeded in agreeing on a universally agreed definition of quality being defined by the individual and their wishes, preferences and needs.
The European Association of Service Providers for Persons with a Disability (EASPD) in 2006 produced a framework on the quality of life principles that would be effective at European level stating that:
“A valid model of service quality must not be based on static or minimum standards; quality is a journey not a fixed abode. Therefore such a model must be dynamic and developmental. A valid model of service quality must enable organisations to pinpoint what needs to be improved. Furthermore it must provide organisations with guidance on how to achieve improvement. The model must be able to demonstrate whether such improvement has been achieved or not”.
Kendrick (2006) states that:
“Quality can be strengthened if the person’s quality of life is seen as the foremost guide to what remains to be done. Quality assurance cannot be tested as to its relevance in some general sense, but will need to repeatedly prove itself on a person by person basis in order to establish its credibility”.
(Quality Strengthening Monitoring and Evaluation and their Role in a Broader Multi Component Quality Enhancement Strategy, Crucial Times March (35))
Quality improvement is seen as a continuous journey of self-reflection with an ever-changing destination.
The next stage in ensuring the delivery of quality services to people is to achieve a joined up effort that includes Regulation as a component, but not the only component, of a Quality framework. All future quality efforts need to be guided by national and international best practice and enshrined in a human rights-based model of delivery. In addition, the proactive involvement of people who require support, their families and frontline staff is imperative when planning future support services.
Statutory and voluntary direct support and advocacy agencies need to align, with an emphasis on partnership for provision of what’s best for the individual and their families and in order to maximise the resources available to support people who use services.
In my thirty years of practice I have found that the biggest single influencers of quality support are still the attitude, motivation, and energy of the people offering the support. However, many structures, systems and processes do need to change. Building on the standards expected by HIQA, it is essential that we now develop quality forums and frameworks that complement and strengthen each other. Improvement initiatives cannot operate in isolation of each other, or with competing focus, and we must maintain a high quality motivated workforce.
Most importantly we must ensure inclusive proactive involvement from people with disabilities and their families in all Quality improvement efforts.