By Dr Lynne Webber MAPS, Practice Leader, Research and Service Development and Kylie Saunders Assoc MAPS, Practice Advisor, Office of the Senior Practitioner, Department of Human Services, Victoria

Some people with disabilities who display behaviours of concern are subjected to restrictive interventions that reduce their ability to think clearly (medications), to move freely (mechanical and physical restraint) or they are secluded alone because their behaviour is perceived to be dangerous to themselves or others. Restrictive interventions may stop a behaviour for a short period of time, but they do not address any underlying factors that cause the behaviour, do not teach new skills for maintaining long-term behaviour change and can have long-term negative psychological and physiological consequences. This article outlines the important role that psychologists have to play in the assessment of the underlying factors impacting upon behaviours of concern and in developing and monitoring the effects of evidence-based biopsychosocial interventions.

Issues faced by people who are subjected to restrictive interventions

Andy is typical of the people currently subjected to restrictive interventions - he has autism and a limited ability to verbally communicate, and he also has epilepsy requiring two types of anticonvulsants which make him feel tired. An inoperable frontal lobe tumour impacts on his ability to think and plan ahead and irritable bowel syndrome makes him feel unwell much of the time. He has certain preferences, such as spending his time walking kilometres every day or shopping for and making craft items. He shares a house with three other people who have disabilities who he doesn't like; he would prefer to live alone in his own house. His mother believes he has suffered trauma from the early use of restrictive interventions (seclusion and physical restraint). Andy is particularly anxious around male support workers (male workers have in the past pinned him down to the floor). His love of walking for hours at a time has in the past led to him being locked inside his house to keep him safe from wandering away without staff being aware. Being locked in his home resulted in self-harm whereas an unlocked environment has reversed this trend. Andy has difficulty understanding punishment, though he can understand simple contracts ... if Andy does A, he will get B.

There are several issues faced by people like Andy. First, all of the people subjected to restrictive interventions in Victoria in disability settings have some form of cognitive impairment which may make it difficult to understand what others are wanting from them and it may be difficult or impossible for some people with certain types of brain damage to frontal lobes (like Andy) to regulate their own behaviour. Second, the majority of people who are currently subjected to restrictive interventions have other disabilities and also may have chronic health problems that severely impact on their quality of life. Many underlying psychological and mental health issues may not be detected or treated (Dagnan, 2008). Third, people like Andy have few choices about which people they live with and may live in houses with other people who they are afraid of. Fourth, many of the people who are subjected to restrictive interventions have histories of trauma (e.g., loss of loved ones, neglect and/or abuse) that has never been treated. It is also possible that restrictive interventions themselves are perceived by people who endure them as traumatic (Ramcharan, 2009).

Ramcharan proposes that many behaviours of concern should be viewed as behaviours of ‘resistance' and ‘protest', that is, legitimate adaptive responses to difficult environments and situations. If this is correct, understanding the function of behaviour is extremely important and indeed there is evidence that interventions based on good functional behaviour analyses (FBA) produced larger intervention effects than those not based on FBA (Harvey, Boer, Meyer, & Evans, 2009).

Assessment tools

Psychology services are most likely to be requested for people with disabilities at times of crisis (i.e., increased behaviours of concern or mental health problems) or during critical points in their lifecycle (e.g., school entry, adolescence, leaving school). Typically a psychologist may be asked to conduct an assessment of the person with a disability in order to establish the aetiology of unusual or extreme behaviours and possibly to seek a diagnostic hypothesis. This is an important role because historically people with a disability, particularly those with an intellectual disability, often have behaviours of concern automatically attributed to their cognitive deficits rather than considering other possible causes. It is this assumption that leads to the use of inappropriate restrictive interventions.

In addition to FBA, there are a number of clinical assessment tools that should be considered for use in assisting with any biopsychosocial and developmental assessment of a person with a disability. It is recommended that a multidisciplinary approach is also taken in choosing and administering specific assessment tools to meet the person's needs and to maintain a person-centred approach (Carr & O'Reilly, 2007). Consideration of communication abilities and preferences, cognitive functioning and age are important factors to consider when deciding upon an appropriate assessment tool to guide the clinical assessment process.

As a psychologist it is important to be aware of the specific clinical assessment tools that have been validated for use with people with a disability. Unfortunately there is still a lack of validated assessment tools when compared to those available for people without disabilities. Therefore reporting of results from unvalidated tools must be done with caution as there are a number of factors that may impact upon a valid administration and assessment result for people with a disability. There are also a number of recommended clinical resources and diagnostic guidelines to assist psychologists in conducting a comprehensive assessment of a person with a disability, including the Diagnostic Manual - Intellectual Disability (Fletcher, Loschen, Stavrakaki, & First, 2007) which provides clear guidelines about the unique considerations required when assessing someone with a possible dual disability.

Evidence-based interventions

Psychologists have an important role to play in developing and reviewing behaviour support plans.

Developing behaviour support plans

Psychologists are in a good position to get all interested parties, including the person concerned, together to develop an integrated plan that can be implemented by all who support the person. Achieving input from all parties will maximise the likelihood that interventions will be implemented consistently across all environments.

Developing evidence-based interventions

A recent meta-analysis of behavioural interventions with children with disabilities reported that self-injury, stereotypy, socially inappropriate and destructive behaviour responded best to behaviourally-based interventions, and disruptive and aggressive behaviour responded least well (Harvey et al., 2009). It was also reported that skills replacement was the most effective outcome especially when preceded by an FBA.

The results of a systematic review by Gustafsson et al. (2009) on psychsocial interventions for adults with a dual disability found weak evidence for the effectiveness of psychosocial interventions. They concluded that there was some evidence that cognitive-behavioural methods, such as relaxation, assertiveness training with problem solving and anger management, lead to a decrease in aggressive behaviour at the end of treatment but this was not maintained over time at follow-up. Unfortunately, they found that many studies could not be included in the review because they were of low quality in terms of defining challenging behaviours and the data that were collected.

Maximising the likelihood that interventions will be implemented

Apart from making sure everyone who will implement the interventions is involved right from the start, psychologists can also assist the support workers to implement the interventions through modelling and problem solving issues when they arise.

Evaluating interventions and revising plans

Finally, psychologists can play an important role in assisting the collection of meaningful data by establishing good operational definitions of the behaviours of concern, and working out what data needs to be collected that can be used to inform the review process and development of revised behaviour support plans.

In sum, psychologists have a unique role to play in making a real difference to a vulnerable group in the population who rarely have a voice. The use of validated assessment tools that provide an understanding of the function of the challenging behaviour and evidence-based interventions to reduce restrictive interventions can significantly increase the quality of life of people with a disability who show behaviours of concern.

Functional Behaviour Analysis: Systematic assessment of the function of behaviours of concern
  1. What behaviour of concern occurs?
    Anna screams and hits the person next to her on the bus after 10 minutes of travel
  2. When does the behaviour of concern occur?
    When Anna is travelling on the bus and seated towards
    the back
  3. What function does the behaviour serve for the person?
    Lets others know she feels sick and needs to get off the bus
  4. What could be done differently to reduce the likelihood the behaviour will continue?
    Ensuring Anna always sits at the front of the bus, and teaching her a way to communicate that she feels ill

 

The principal author can be contacted at Lynne.Webber@dhs.vic.gov.au.

References

Carr, A., & O'Reilly, G. (2007). Interviewing and report writing. In A. Carr, G. O'Reilly, P. N. Walsh, & J. McEvoy (Eds.), The Handbook of Intellectual Disability and Clinical Psychology Practice (pp. 169-227). East Sussex: Routledge.

Dagnan, D. (2008). Psychological and emotional health and well-being of people with intellectual disabilities. Learning Disability Review, 13, 3-9.

Fletcher, R., Loschen, E., Stavrakaki, C., & First, M. (2007). Diagnostic Manual - Intellectual Disability: A clinical guide for diagnosis of mental disorders in persons with intellectual disability. New York: NADD Press.

Gustafsson, C., Ojehagen, A., Hansson, L., Sandlund, M., Nystrom, M, Glad, J., Cruce, G., Jonsson, A-K., & Fredriksson, M. (2009). Effects of psychosocial interventions for people with intellectual disabiities and mental health problems: A survey of systematic reviews. Research on Social Work Practice, 19 (3), 281-290.

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

Ramcharan, P. (2009, April 24). Experiences of restrictive practices: A view from people with disabilities and family carers. Paper presented at the 5th Annual Conference of Disability Professionals Victoria.

InPsych December 2009