Helena Lydon

Positive behaviour support: What model of disability does it represent?

ABSTRACT Positive behaviour support (PBS) has become well established as an intervention approach for individuals with intellectual disability and challenging behaviour. However, what remains unexplored is the relationship between PBS and the medical and social models of disability, which historically are the dominant conceptual frameworks put forward in understanding disability. This paper identifies the difficulties in exploring this relationship due to the often simplistic portrayals of such models. Though PBS has a change agenda, typically a characteristic of the medical model, it is change at an ecological level that is central to PBS. An analysis of the practices of PBS demonstrates a concern with pragmatically identifying the interaction between person and environment to reduce the occurrence of challenging behaviour. PBS practices are considered to be more aligned with a supports model because they build an individual ecology of support tied to meaningful quality of life outcomes for individuals with challenging behaviour.

Increasing appropriate conversation skills using a behavioral skills training package for adults with intellectual disability and autism spectrum disorder

The current research evaluates the effectiveness of a behavioral skills training (BST) package used to increase appropriate conversation interactions for six adults with autism spectrum disorder (ASD). Deficits in the area of social skills can become a significant feature for individuals with disabilities and in particular for those with ASD. A multiple probe design across participant dyads was employed to examine the effects of the intervention on conversation interactions. The BST package was delivered in small group instruction and included (i) instructions about having a conversation, (ii) modeling a conversation, (iii) practicing a conversation, and (iv) feedback on performance during each session. Results indicated that BST was effective for increasing appropriate conversation interactions for all six participants, and maintenance was evident 4 weeks post intervention. The findings were discussed in relation to the importance of social interactions and communication amongst this population.

Chronic pain: a source of disability in its own right?

Studies examining the prevalence of chronic pain are often met with a sceptical response – surely chronic pain could not affect so many people! Yet, while prevalence estimates differ for various methodological reasons, the studies are remarkably consistent in terms of identifying large portions of the population as being affected by chronic pain. Drawing on the National Longitudinal Study of Adolescent to Adult Health (Add Health) database, de la Vega et al. provide important data on the extent of chronic pain in adolescents with physical disabilities. Their findings are noteworthy for obvious reasons when extrapolated to the population level; one in every four adolescents with a physical disability has chronic pain and one in seven adolescents in the general population has chronic pain. These data remind us, as heath practitioners, of the importance of asking every young person about the presence of chronic pain, whether or not they have a disability and whether or not pain is the primary reason for consultation. The Add Health study used a definition of chronic pain that is much more conservative than that used by organisations such as the World Health Organisation and the International Association for the Study of Pain, who define chronic pain as pain that has persisted beyond 3 months, rather than the 12 months definition used in the Add Health study. Further, the definition of physical disability in the Add Health study, while focusing to some extent on the use of mobility aides such as a cane, wheelchair, or use of a prosthetic, also defines disability as ‘any difficulty using your hands, arms, legs, or feet because of a permanent physical condition’. For the majority of people with chronic pain, their condition is permanent and many have pain that is without a discernible cause based on radiological and other investigations. Conceivably, the definition of physical disability used in Add Health could actually encapsulate a population of people who have chronic pain without any particular comorbid physical disabilities. In other words, chronic pain itself could be construed as a physical disability. This idea is not so controversial when one considers that chronic pain has been proposed as a disease in its own right and in fact will appear for the first time in ICD-11 when it is published later this year. The identification of chronic pain as a disease will be a game changer in terms of epidemiological research in this area. Hopefully this will also translate into better identification and better management of chronic pain in the large proportion of the population that is affected. De la Vega et al. also identified some limitations in the data set, including the lack of information on functional impairment arising from pain and the lack of information on the cognitive profile of respondents. While many specific physical disabilities do not have comorbid cognitive impairment, people with an intellectual disability or other related neurodevelopmental disorders may well have an increased risk of experiencing chronic pain. Access to pain management is now considered a basic human right (https://www.iasp-pain.org/DeclarationofMontreal), but there are particular challenges associated with identifying pain in people with communication difficulties and whose perception and expression of pain may differ from typically developing children and teenagers. In the general population, the approach to management of chronic pain usually involves a combination of management provided by health professionals and self-management led by the individual. As yet, we know little about how to support people with comorbid physical and cognitive disabilities, either in medical management of their pain or in practicing good selfmanagement and this should be a focus for future research.

An evaluation of positive behavioural support for children with challenging behaviour in community settings

This study employs a multiple baseline across individual design to describe the implementation of positive behavioural supports for seven children and adolescents in residential community settings over a period of 24 months. These individuals with intellectual disability are residing in one county with long-standing challenging behaviour resulting in home breakdown and serious physical injury. Four types of outcome are presented: rates of behaviour, rates of medication, psychiatric symptomatology and quality of life (QoL). Behaviours reduced to lower levels for the majority of participants following the implementation of positive behavioural supports, and improvements were largely sustained. The use of psychotropic medications reduced or stabilized for the majority of individuals over the same period. QoL Questionnaire scores improved substantially for four participants. The results are discussed in the context of a framework for supporting children with severe challenging behaviours in the community.

Parental satisfaction with early intensive behavioral intervention

Research related to parental satisfaction with early intensive behavioral intervention (EIBI) remains limited. A 35-item questionnaire called the parental satisfaction scale–EIBI (PSS-EIBI) was developed with four subdomains (child outcomes, family outcomes, quality of the model, and relationship with the team). Study 1 assessed levels of satisfaction for 48 parents with their child’s EIBI program after approximately 1 year of intervention. Study 2 examined the relationship between parental satisfaction, length of child participation in EIBI, and the relationship between parental satisfaction and actual outcomes for their child as assessed by the Verbal Behavior Milestones Assessment and Placement Program after approximately 2 years. Results indicate that parental satisfaction with EIBI was consistently high in all four domains of the PSS-EIBI in both studies. Parental satisfaction was found to be associated with gains in child functioning after 1 year of intervention.