By Associate Professor Keith R. McVilly MAPS
Principal Research Fellow, School of Psychology, Deakin University

Introduction

Working with people with disability is not the role of any particular psychology specialisation, or for particular psychologists working in designated disability services. This is an area of work for which we all need to be prepared, regardless of area of practice or field of research. A contemporary understanding of disability takes into account the complex interaction of a multiplicity of factors (McVilly & Newell, 2007):

Disability is not simply a quality or attribute inherent in an individual person that requires treatment or cure. Rather, disability comes about as a consequence of the complex interaction between biological, psychological and social factors, including physical, economic and attitudinal barriers to participation at home, in education, at work, or in the community generally. (p. 10-11)

With a biopsychosocial understanding of disability in mind, the Australian Institute of Health and Welfare defines the population of Australians with disability as those who have experienced impairments, activity limitations or participation restrictions that have lasted, or are likely to last, for at least six months and that restrict everyday activities. As a sub-set within these data, the AIHW identifies those persons with a "severe to profound core activity limitation", necessitating personal assistance or supervision of their self-care, mobility or communication. The AIHW (2008) predicts that by 2010 there will be 1.5 million Australians who will fall within this category of disability, including people with physical, sensory, intellectual, neurological and psychiatric disability.

A major challenge for psychology over the coming decades will be to develop our understanding of the aspirations and needs of the growing population of persons with the most significant core activity limitations, and equip our profession with the skills necessary to provide evidence-based supports. This article discusses the significant roles that psychology can contribute to enhancing the lives of people with disability in various settings and identifies the major issues for psychologists working with people with disability.

Where are psychologists likely to be working with people with disability?

Education sector

Research has demonstrated that children with disabilities do benefit from mainstream education (for a review, see Foreman 2004). Furthermore over 70 per cent of children with a severe, moderate or mild core activity restriction and 49 per cent of children with a profound core activity restriction attend ordinary classes in ordinary schools (AIHW, 2003). Of course success at school, both educationally and socially, can be significantly mediated by the supports provided and, importantly, the knowledge and skills of teachers and classroom aids. While in the past special educators were provided with substantial training in the needs of students with disability and how to adapt curriculum to best meet the needs of these students, this has not necessarily been the case for all teachers being prepared for mainstream classes. Psychologists, more than ever, will be relied upon to assist teachers to better understand the needs of students with disability (in terms of cognitive learning processes, psychosocial adjustment and major clinical concerns) and to adapt curriculum and classes to more effectively include students with disability. The role of psychology in schools will not be limited to assessment and categorisation of students or providing counselling to specific individuals at the ‘guidance office', but rather will expand to encompass a greater emphasis on the education of teachers and classroom aids, as well as working hands-on to support students with disability to make the most of their time at school.

Employment-related services

Psychologists are already involved in a range of activities related to labour market participation, including aptitude testing, personality profiling, promotion or re-deployment. So too psychologists are involved in vocational rehabilitation of persons with acquired disability. A major challenge for our profession will be to equip ourselves with the knowledge and technology to support individuals and communities to better understand and harness the skills and contribution of people with the highest support needs, including those with intellectual, psychiatric, complex physical disability and long-term health conditions. Importantly, we need to develop skills to assist many people with developmental disability, who have previously not had an opportunity to participate in the labour market, to realise their vocational potential and make a contribution to the economic fabric of our community. Unemployment among people with disability has been estimated at almost twice that of the general population, and potentially three times higher for those with severe or profound core activity limitations (AIHW, 2008). The consequences of this for individuals include poverty, social marginalisation and being left vulnerable to poor physical and mental health, which only further confounds their experience of disablement.

Community settings

Given the argument that disability is more than simply a clustering of individual pathologies to be assessed and treated, how might the experience and expertise in community psychology be harnessed to the benefit of people with disability? Two of the principle tenets of the disability movement have long been the ‘presence' and ‘participation' of people with disability in their local community. These goals are far from having been realised. Is it because we have sought to pursue the community integration of persons with disability through attempts to change people to fit in with society, driven by a more traditional clinical perspective, rather than investigating society's concerns, needs (and fears) and developing strategies to better equip our communities to welcome, live with and work alongside people with disability?

Health and mental health services

While disability is not an illness per se, people with disability are not exempt from ill health. Consequently they frequently require services from hospitals, community health clinics and mental health services. A major barrier to their receipt of effective health care is the long recognised problem of ‘diagnostic overshadowing', where clinicians fail to effectively diagnose either psychiatric or physical conditions in persons with complex physical or communication related disability and/or intellectual disability. This results in either a failure to provide appropriate treatment or the provision of inappropriate or contraindicated treatment. Psychologists, as experts in the biopsychosocial model of health and wellbeing, can play an important role in assessment processes, and in assisting health care providers to better understand and respond to the needs of their clients (patients) with disability.

Mental health services are a critical area in which psychology can mediate access to the health system for people with disability. Research findings vary, but the general view is that for people with intellectual or developmental disability, the instance of diagnosable (and treatable) mental illness could be as high as 30 per cent (Holland & Jacobson, 2001). However, the ongoing systemic problem of whether the person is to be considered the responsibility of a ‘disability service' or a ‘mental health service' remains, when in reality they need both service systems working together. Again, psychologists adopting a biopsychosocial framework should be well positioned to assist service systems to adapt their policies and organisational behaviours to better respond to the needs of people with disability. This is a critical public health issue on which psychology, particularly practitioners in public mental health services, could take a lead.

Prisons

It is estimated that almost 40 per cent of women and 30 per cent of men in prison have a long-term disability or illness contributing to the experience of disablement (Hogg, 2002). With regard to intellectual disability in particular, Australian studies have estimated that over 20 per cent of our prison population could have an intellectual disability or related cognitive impairment (Hayes, 2000). The reasons these men and women find themselves in prison are many and varied. However, here too psychology has an important role to play with individual offenders, together with the judicial and corrective systems with which they are involved. Those who work with prisoners with disability, including members of the legal profession and custodial staff, can be assisted to better understand the nature of disability and the person behind the offence. Psychologists in these settings are frequently asked to provide risk assessments and advice to courts, prison classification committees and parole boards, and the current technologies are quite limited when applied to people with intellectual disability and related cognitive impairments. We need to be cautious in the interpretation of generic assessments that might not fully capture all the clinical and environmental dynamics affecting the lives (and offending behaviours) of some people with disability. So too we need to be engaged in the development of improved assessment technologies, and skilled in adapting psychosocial educational programs for prisoners to allow for cognitive impairment and associated difficulties with language, information processing and problem solving.

Aged care

Life expectancy is increasing in the general population, among those recovering from accident or trauma, and in the population of people with a life-long disability (AIHW, 2006). However, in living longer, people from the general population are increasing the number of years they spend in which they may experience a core activity limitation and, consequently, disability. For people with developmental disability, their increased life expectancy can also give rise to circumstances in which they are more likely to experience disabling conditions that their peers in past generations never lived long enough to experience. For example, people with Down syndrome are now living into their 30s and 40s and showing signs of early onset dementia with the associated distress and behavioural disturbance of this condition. These issues affect not only the person with disability, but also the mental health and wellbeing of family members and those providing support. Psychologists have an important contribution to make in aged-care services by offering alternative support and intervention options, where medication is all too often the treatment of preference.

Issues in working with people with disability

Multi-disciplinary practice

An important emerging feature of the professional practice landscape in the field of disability services is that of multi-disciplinary team work and trans-disciplinary practice. Given the complexity of the biopsychosocial circumstances with which our clients present, it would be a bold psychologist indeed who believed they could ‘go it alone'. Our colleagues in medicine have in recent years begun to recognise the importance of multi-disciplinary practice and hence the proliferation of multi-disciplinary general practices and community health clinics. When working with people with disabilities, especially those with severe and profound core activity limitations, regardless of their diagnosis it will be increasingly important for psychologists to forge close working relationships with their colleagues in medicine, nursing and the various allied health disciplines such as speech pathology and occupational therapy etc. It might be that psychology needs to explore how such inter-disciplinary relationships can be nourished in undergraduate and postgraduate university programs by seeking cross-disciplinary educational opportunities which would later promote and support collaborative practice.

A further challenge to psychologists seeking to engage in multi-disciplinary work is where collaborations involve service personal with training predominantly at a technical level. These staff are frequently the major mediating variable, with the capacity to significantly influence (positively or negatively) program and therapeutic outcomes for clients. In these situations, psychologists need to take responsibility for moderating their communication and expectations to realistically match the needs of these staff (e.g., structured training emphasising practical hands-on activities and modelling direct work with clients; use of plain language and brevity of detail in reports and written documentation). We also need to be aware of, respect and support current efforts to professionalise the disability support workforce (e.g., McVilly & Newell, 2007; Disability Professionals Australasia [www.dpaustralasia.org]).  

Evidence-based practice

In the disability field, many new developments have been philosophically led and devoid of any serious scientific examination (Jacobson, Foxx & Mulick, 2005). As a discipline characterised by the scientist-practitioner approach, psychology has a critical contribution to make in establishing the evidence base for policy, service development and interventions designed to enhance the wellbeing and quality of life of people with disability. Partnering with colleagues in universities, supporting postgraduate students through research opportunities in applied settings, and harnessing techniques such as systematic case review and single case study design can enable us all to contribute to the scientific rigour of our profession and the evidence base of services provided to people with disability.

As psychologists we need to acknowledge and respect that supporting people with disabilities is rocket science and that it should be taken seriously and approached professionally. Poorly conducted or limited assessment at best gives rise to ineffective intervention and support strategies and, at worst, can cause harm to both people with disabilities and others involved in their support. For these reasons as a profession we need to review our skills in, and renew our commitment to, the use of Functional Behaviour Assessment (FBA) and Functional Analysis (FA) (Umbreit, 2007). There is a wealth of scientific evidence that the use of FBA and FA significantly enhances intervention outcomes (Carr, et al., 1999). Importantly, there is evidence to indicate that using these assessment techniques, as an integral component of assessment and intervention planning, decreases the use of punishment and other aversive strategies which are inconsistent with ethical practice grounded in a respect for civil liberties and human rights.

We also need to ensure that as a profession we are aware of important initiatives in the field of assessment and diagnosis specific to particular disability groups. These include new diagnostic systems to complement DSM and ICD (see Royal College of Psychiatrists, 2001; National Association for the Duly Diagnosed, 2007). So too, we need to be aware of new developments in the field of genetics, and in particular research
in the area of behavioural phenotypes (www.ssbp.co.uk/ssbp).

Human rights

A major driving force in the disability sector over the next decade or so will be the recently adopted United Nations Convention on the Rights of Persons with Disability, 2006 (www.un.org/disabilities). This international convention will influence legislation and policy at a national and State level. Across Australia some jurisdictions have already passed human rights legislation consistent with the UN convention (e.g., the ACT and Victoria). So too, all of the Australian jurisdictions have either recently or are soon to review legislation governing the delivery of disability services. Psychologists generally, and State Branches of the APS in particular, could all make informed contributions to these legislative reform processes.

An issue receiving particular attention in the current legislative and policy reform process in the disability sector is the use and abuse of restrictive practices and aversive interventions. Restrictive practices refer to a range of practices that are used to limit, restrict or control aspects of a person's behaviour, which any other person in the community would consider to be an infringement of his or her human rights and civil liberties. Commonly they take the form of containment, seclusion, or environmental, physical, mechanical or chemical restraint. However, they can also involve more subtle actions to effect social restraints, such as impeding choice and self determination, restricted opportunities, the use of coercion, domination, threats or intimidation (ASSID, 2009).

There is now a strong evidence base for the effectiveness of positive behaviour support (i.e., strategies that combine environmental interventions and skill development) and the use of a range of psychosocial interventions that do not require the use of restrictive or aversive practices (Harvey et al., 2009). Furthermore, there is a wealth of practice advice available to practitioners seeking to implement positive, non-aversive approaches (e.g., Allen, 2009; Hagiliassis et al., 2006). The use of techniques such as overcorrection, response cost and exclusory time out can no longer be considered ethical or accepted practice in the treatment and support of people with disability.

It should be noted that the British Psychological Society in its guidelines on Psychological interventions for severely challenging behaviours shown by people with learning disabilities (Ball, Bush & Emerson, 2004) has clearly articulated that the success of a behaviour intervention program should not be measured solely on the basis of the decreasing incidence and intensity of challenging behaviours. Rather, indicators of success should also include measures of increasing quality of life and wellbeing, for both the person with disability and those who support them (p. 87). To further assist practitioners in Australia, the APS is currently developing a set of clinical guidelines - these are discussed in detail on page 20 of this edition of InPsych.

Person-centred approaches

In terms of ethical practice, the National Health and Medical Research Council of Australia has redefined what constitutes ethical conduct for researchers. This standard is equally applicable to, and informative for, practitioners: "Ethical conduct is more than simply doing the right thing. It involves acting in the right spirit, out of an abiding respect and concern for one's fellow creatures" (NHMRC, 2007, p.3). Consistent with this standard of practice, psychologists working in the disability sector will increasingly be called upon to adopt person-centered approaches to both clinical practice and research.

Person-centred approaches have been widely adopted in the UK, Canada and the USA. In contrast to traditional approaches in which the intervention/treatment or research agenda was determined by an expert practitioner based on their formal assessment of the person or reading of the literature, person-centered approaches begin with an intense listening to the wishes, preferences and aspirations of people with disability and those who constitute their circle of support. The role of the practitioner is not so much to advise the person what they could or should do, but rather to work in partnership to develop strategies to assist the person to explore and achieve what they desire. Similarly, in a research context, person-centered approaches advocate for people with disability to be partners in research, rather than simply subjects or participants in a study. For these reasons, there is likely to be a growing emphasis on ‘participatory' and ‘emancipatory' research, together with a greater use of ‘applied action research' methodologies (Ramcharan, Grant & Flynn, 2004). Here too, we need to ask how inclusive are our research practices outside of disability-specific research, and if our research populations are truly representative. All too often (for the sake of convenience) people with disability are either not recruited or explicitly excluded from participation in research. This is neither ethical nor good scientific practice. As scientist-practitioners, we need to be across these developments and ensure our knowledge, skills and practices are up to the task.

Some concluding reflections

Working therapeutically with people with disabilities and incorporating their participation in research activities will not be something relegated to specialist psychologists working in large institutions (most of which are now closed) or disability dedicated research units (for which there is very little funding available). Rather, a good many psychologists are likely to be called upon in the course of everyday practice and research activities to work with people with disability - as a client, research participant or colleague. As a profession, are we equipped to work in a community with a growing population of people who experience disablement in a variety of contexts and for a variety of biopsychosocial reasons? What are the expectations we have of our undergraduate and graduate training programs, and the competencies we expect of our probationary psychologists? What opportunities are available for in-service training in the area of disability, and do we as individuals prioritise these when considering how best to spend our limited and valuable professional development time? Evidence-based practice in the service of people with disabilities and meaningful partnerships in research with people with disabilities pose many challenges, but also great opportunities for psychology to advance the stated mission of the APS, to improve community wellbeing and scientific knowledge.

The author can be contacted at keith.mcvilly@deakin.edu.au.

References

Allen, D. (2009). Ethical approaches to physical interventions: changing the agenda. Kidderminister, UK: BILD.

Australian Institute of Health & Welfare [AIHW]. (2003). Disability prevalence and trends. Canberra: Author.

AIHW. (2006). Life expectancy and disability in Australia 1988 to 2003. Canberra: Author.

AIHW. (2008). Disability in Australia: trends in prevelance, education, employment and community living. Canberra: Author.

Australasian Society for the Study of Intellectual Disability [ASSID]. (2009). Policy statement: Against the use of restrictive practices (in consultation). Melbourne: Author.

Ball, T., Bush, A., & Emerson, E. (2004). Psychological interventions for severely challenging behaviours shown by people with learning disabilities. UK: British Psychological Society.

Carr, E., Horner, R., Turnbull, A., Marquis, J., McLaughlin, D., McAtee, M., Smith, C., Ryan, K., Ruef, M & Doolabh, A. (1999). Positive behaviour support for people with developmental disability: a research synthesis. US: AAMR.

Foreman, P., Arthur-Kelly, M., Pascoe, S., & Smyth King, B. (2004). Evaluating the educational experiences of students with profound and multiple disabilities in inclusive and segregated classroom settings: An Australian perspective. Research and Practice for Persons with Severe Disabilities. 24, 183-193.

Hagiliassis, N., Marco, M., Gulbenkoglu, H., Iacono, T., & Watson, J. (2006). Beyond speech alone: guidelines for practitioners providing counselling services to clients with disabilities and complex communication needs. Melbourne: SCOPE.

Harvey, S., Boer, D., Meyer, L., & Evans, I. (2009). Updating a meta-analysis of intervention research with challenging behaviour: treatment validity and standards of practice. Journal of Intellectual & Developmental Disability, 34, 67-80.

Hayes, S. (2000). Needle in a haystack: identifying the offender with intellectual disability. In T. Shaddock, M. Bond, I Bowen and K. Hales (Eds), Intellectual disability and the law: contemporary Australian issues (pp. 63-72). Callaghan, NSW: ASSID.

Hogg, R. (2002). Prisoners and the penal estate in Australia. In D. Brown and M. Wilkie (Eds), Prisoners as citizens: human rights in Australian prisons (pp. 3-19). Sydney: The Federation Press.

Holland, T., & Jacobson, J. (2001). Mental health and intellectual disabilities - addressing the mental health needs of people with intellectual disabilities. Report by the Mental Health Special Interest Research Group of IASSID to the WHO. Clifton Park, NY: IASSID.

Jacobson, J., Foxx, R., & Mulick, J. (2005). Controversial Therapies for Development: Fads, Fashion, and Science in Professional Practice. Mahwah, NJ: Lawrence Erlbaum.

McVilly, K., & Newell, C., (2007). Australasian code of ethics for direct support professionals. Melbourne: ASSID.

National Association for the Duly Diagnosed. (2007). Diagnostic Manual - Intellectual Disability [DM-ID]. Kingston, NY: Author.

National Health & Medical Research Council. (2007). National statement on ethical conduct in research. Canberra: Author.

Ramcharan, P., Grant, G., & Flynn, M. (2004). Emancipatory and participatory research: how far have we come? In E. Emerson, C. Hatton, T. Thompson and T. Parmenter (Eds), International handbook of applied research in intellectual disabilities (pp. 83-114). Chichester, UK: John Wiley & Sons.

Royal College of Psychiatrists. (2001). Diagnostic criteria for psychiatric disorders for use with adults with learning disabilities / mental retardation [DC-LD]. London: Gaskell.

Umbreit, J. (2007). Functional behavioral assessment and function-based intervention: an effective, practical approach. Upper Saddle River, N.J.: Pearson Merrill Prentice Hall.

InPsych December 2009