The Health Information and Quality Authority Draft National Standards on Services for People with Disabilities

by Brendan Broderick, CEO, Sisters of Charity of Jesus & Mary Services/ Muiríosa Foundation

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On 16 September 2008, the Health Information and Quality Authority published the first Draft National Standards on Services for People with Disabilities. A consultation process was then established where interested parties could submit their views.

The standards aim to describe what a high-quality, safe service for people with disabilities should be. HIQA expects the standards to promote good practice and quality improvement in disability services in Ireland. It is the aim of the standards that service users and the representatives would gain a clear understanding of the quality of the service that they can expect from any given service provider. The standards cover seven areas:

  • Quality of life
  • Staffing
  • Protection
  • Development and health
  • Rights
  • The physical environment
  • Governance and management.

Standards are stated for each area, followed by criteria offering the detail of the standard. An example is standard 6.1.Autonomy and Participation that states ‘Each individual exercises choice and control over his/her life and over his/her contribution to his/her community.’
Various criteria are offered that operationalise the concept of autonomy, such as:

  • Criterion 1.1. ‘The abilities of the individual are recognised and fostered’ or
  • Criterion 1.6. ‘The individual has the opportunities and is supported to participate in individual and /or community recreational activities within the residential service and in the community.’

The standards advisory group have had a difficult task in bringing forward these standards and are to be commended for the achievement. This is, however, just the first step as the standards may require some refining so that they can be measured in meaningful ways. Standards set a minimum quality of service; they are not needed by high-quality services and they may be interpreted by some service providers in a manner that renders them operationally useless unless they are effectively tied down, and inspected thoroughly. These standards have been a long time coming—they need to be as good as they can be before being signed off. Consultation closed on 31 October and HIQA promises that ‘information collected from this consultation process will be used to inform the development of the final set of standards later this year.’

It is to be hoped that the end result realises HIQA’s aspiration, as stated on page 6 of the Standards, which defines the principles underpinning the standards. This section states that ‘Institutional practices that put the needs of the centre or the staff before those of the residents are unacceptable.’ If even this limited goal can be achieved, the quality of life for the users of some services in Ireland will be much improved.
Colin Griffiths Lecturer. Trinity College, Dublin.

Reconciling positive multi-element behaviour support and person-centred practice
Brendan Broderick responding to presentations made at a mini-conference on multi-element behavioural supports in Mullingar, 3 October, 2008

What has really crystallised for me today is the sea-change in the practice of what, 30 years ago when I began my exposure to the world of intellectual disability as an apprentice psychologist, we used call ‘behaviour modification’ and the contemporary practice of applied behaviour analysis. Back then our defining concerns were getting the person to fit in, ensuring that the individual with intellectual disability complied with prevailing social norms, with a strong focus on achieving socially acceptable behaviour. We used to do things called compliance training, establishing instructional control and various forms of over-correction. At the heart of our practice was the core assumption— almost a default setting—that negative or ‘socially undesirable’ behaviour was essentially attention-seeking in its motivation. The golden rule was to avoid reinforcement AT ALL COSTS.

As a young professional keen to establish some credibility, one would enquire with a certain trepidation as to how the client (as they then were styled) was progressing on his programme. The sweetest feedback was the comment, ‘he has had no behaviours.’ On reflection, I wonder whether ‘he has had no behaviours’ might have been more accurately translated by ‘he has stopped being an issue’ or ‘he has learned to live on our terms’ or, most damningly, ‘his spirit has been broken.’ Reassuringly, in hindsight, one rarely received such ‘no behaviours’ feedback. The reservoir of resilience on which the human spirit draws was too strong, too insistent to surrender.

The stories presented today about positive multi-element behaviour support come from a very different place, a much better place, a place committing to honour and nurture the human spirit. Most reassuringly, the whole attention-seeking idea has flipped. What has been outlined again and again is how to pay attention exquisitely, how to pay intense attention. We have also received many exemplary illustrations of what it means to take very seriously what the person is trying to convey and to be responsive to the individual in a way that respects the person for the person he is, responsiveness on the person’s own terms—and in a way that will work for him in the world. (It’s not that we lacked compassion thirty years ago, or the passion to improve the lives of people. But we were over-impressed, perhaps seduced, by the allure of the effectiveness and power of faithfully applied behavioural technology.)

Today’s presentations speak to me much more of relationship, of communication, of personal commitment, commitment expressed in painstaking care, of endurance (staying with the person through thick and thin, sticking at it until some kind of break-through is achieved), rather than of ‘target behaviours’, ‘inter-rater reliability’, ‘functional analysis’, ‘periodic service review’, etc. I’m not saying that these aspects of the discipline are not important, are not essential, but the deeper reassurance I am taking with me are these core fundamental values.

What each of the many uplifting stories convey is an exquisite, customised interpretive and translation service for vulnerable citizens with complex lives. Almost all of the stories involve processes for interpreting the world to the person and for supporting the person to get across to others what they want, often desperately, to convey. The high stakes involved in securing this kind of interpretive and translation service were compellingly portrayed in a recent newspaper article by a mother of a child with autism trying to adequately dramatise the interior alarm and panic of her child and the consequent necessity for access to applied behaviour analysis intervention. The reader was invited to imagine the experience of being suddenly dropped into the Tokyo underground, to register the sensory assault and overload, to try and access the sense of disorientation and confusion at not knowing the routines, not being able to read any of the signs, not having any awareness of the culture. Many of the stories are in essence narratives of rescue from that kind of panic, that level of confusion, that pitch of frustration.

Within our own services I have overheard conversations about the competing merits and demerits of positive, multi-element behaviour support and person-centred practice. Sometimes people speak as if the respective approaches are at odds with one another. Even those who seem favourably disposed to both forms of practice suggest an inherent tension. I am always surprised at the assumption of a dissonance between the approaches.

What I have heard here today are many examples of positive behaviour support applied within a profoundly person-centred orientation. What has been described in the different case studies aligns fully with all of the central tenets of exemplary person-centred practice:

  • A life on the person’s own terms, a strong focus on self-determination;
  • A recognition that what everybody needs is a life (as in the get a life exhortation, and not just their equitably distributed ‘turn’ in a busy group-based setting);
  • A drive to build a life of quality and inclusion. John O’Brien makes the point that person-centred planning is not about generating a plan. It is about creating a network around a person’s desire. The realisation of that desire sometimes involves painstaking, multifaceted guidance of the fine-print variety. That is how I understand—and where I place—positive multi-element behaviour support.

The North Star that guides both person-centred practice and the behaviour support plan is the vision the person wishes to pursue. If we focus too narrowly on the dimensions of stability and adjustment, there is a danger of losing traction with vision. When things are settling down, when the slope of the graph is heading in the right direction, when the situation is getting comfortable, we sometimes need to jump-start a reconnection with vision—reanimate, recover a sense of urgency.

This latter point touches on the dangers of losing ambition, the jeopardy of underestimating what needs to be put in place, the opportunity costs of underestimating the capacity and resilience of those we are working with. Too often the hopes and aspirations of citizens with disability are set at such a low level that they convey contentment and gratitude at whatever is made available, however meagre. We must hold off concluding that people are happy or contented until they have an appropriate sense of possibility. Again, if I may reference John O’Brien, the great gift of people with disabilities is to make a life of whatever is available.

Michael Kendrick, the Canadian consultant who has been assisting us in recent years, makes the point that Behaviour settles when people are treated meticulously, respectfully—and not provoked. We have heard many such stories today—heartening, heart-warming, hugely impressive stories.

We have also received an enormously powerful lesson today: we do not have to wait until the ideal arrangement is in place, we do not have to wait until the immediate circumstances are much better to start paying close attention to the person, to open a space within ourselves and plumb the deep reservoir of learning that is available if we pay attention—not to presume it is obvious, not to presume that we already know whatever needs knowing—and then respond purposefully, rigorously, vigilantly, sensitively. If we do, we can often make a big difference, sometimes a transforming difference.

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