Community integration or community exposure? A review and discussion in relation to people with an intellectual disability

Background: This paper reviews the issue of integration as it applies to people with an intellectual disability. A compelling finding is the almost exclusive orientation of the literature to physical integration within the general community of non-disabled people. Moreover, it seems to be generally assumed that the more frequently people experience such integration the better their lives will be. Methods: We question the validity of this assumption on several grounds. It is social, not physical integration, that has a reliable positive influence on well-being. This is an important conclusion as some disabled people find effective social integration with the general community extremely difficult to achieve. Because of this, the consequences of an overly enthusiastic program of integration for such people has more potential to be more stressful than beneficial. Results: We further argue that, as integration is being pursued to benefit the individual, the essential goal of service provision should be to achieve a sense of community connectedness, rather than being concerned with physical integration within the general community.
Conclusion: It is proposed that such connectedness is more likely to be achieved within the community of people with an intellectual disability.

The development of the nutrition and activity knowledge scale for use with people with an intellectual disability

Background Obesity is an increasing health problem for many Australians, no less so among people with an intellectual disability. Behaviour change aimed at improving nutritional intake and increasing levels of physical activity is a requirement for the reduction of obesity. An essential part of this process is to first ascertain the level of knowledge and beliefs people with an intellectual disability have about these behaviours.

Methods The aim of this study was to develop and psychometrically evaluate a scale to assess levels of nutritional and physical activity knowledge among people with an intellectual disability.

Results Seventy-three people with an intellectual disability completed the interview-rated scale at time 1 and 66 of them completed it again at a 3-week re-test.

Conclusions The scale demonstrated strong factorial construct validity, high internal consistency and good temporal stability. The applications of this scale in future research and in intervention programmes are discussed.

Emerging trends in the use of drugs to manage the challenging behaviour of people with intellectual disability

Background Concerns about the pharmacological management of the behaviour of individuals with intellectual disability have resulted in the development of legislative and procedural controls.
Method This Australian study provided a comparison of 873 reported cases where drugs were administered to manage behaviour in March 2000, with 762 cases reported in March 1993. Drug use in individuals who remained medicated across time (n = 316: recurrent sample) was also compared with those who were reported only in 1993 (n = 329: limited sample).
Results A small decrease in the proportion of individuals who were reported to have received medication was evident over time (from 5% to 4.5% of total population). However, this was accompanied by an increase in drug diversity and interclass polypharmacy. An increase in antidepressant use was evident (from 7.4% to 13.8% of reported drugs), and there was a trend towards greater reporting of medication for acute behavioural problems and medication use with children. Greater use of antipsychotic drugs was evident in individuals who remained medicated across time compared with those who did not.
Conclusions The findings suggest the need for continuous research into practice. The fact that many individuals receive medication over long periods makes it incumbent on service providers to engage in regular, comprehensive and individualized review and evaluation of medication regimes.

Effectiveness of treatment programmes for depression among adults with mild/moderate intellectual disability

Background The current study describes the development and evaluation of group treatment programme for people with mild/moderate intellectual disability (ID).
Methods A total of 34 participants (16 males, 18 females) completed the treatment programme and 15 participants (six males, nine females) comprised a control group.
Results Compared to the control group, the intervention group showed an improvement in levels of depression, positive feelings about the self, and lower levels of automatic negative thoughts after the intervention. These changes were maintained at 3-month follow-up.
Conclusions These results demonstrate that intervention programmes are effective for the treatment of depression among people with ID.

Further examination of relationships between events and psychiatric symptoms in adults with intellectual disability

Background: It has been proposed that people with intellectual disability (ID) might be similar to the general population in the way they respond to significant life events. Some preliminary findings have demonstrated that adults with ID who have experienced recent life events have an increased probability of having psychiatric problems. The aims of the present study were to determine whether previous findings can be replicated, and to examine the influence of additional diagnoses associated with ID on the strength of relationships between life event frequency and psychiatric problems.

Methods: Adults with ID (n = 624), living either in staffed community accommodation or in family or foster homes, were assessed on the Developmental Behaviour Checklist for Adults (DBC-A) and a 37-item life events checklist. Carers who knew the person well acted as proxy informants.

Results: People living in staffed accommodation experienced more life events than people living with natural or foster families. Life event frequency predicted DBC-A total score, five of six sub-scale scores, and caseness status, after significant demographic factors were taken into account. However, the strength of correlations between life event frequency and DBC-A total score varied among sub-groups identified by type of developmental disability and level of ID.

Conclusions: Weak but significant associations between emotional and behavioural problems and life events experienced by adults with ID were demonstrated, but it was also shown that the strength of such associations varies among sub-groups of this heterogeneous population. Future research needs to take account of the circumstances surrounding the life changes, the period of time over which changes might have taken place, and the meaning that the person might attach to the changes. Research into the causal relationship between exposure to life events and the onset of psychiatric problems is also warranted.

Individual characteristics associated with community intergration of adults with intellectual disability

Background The purpose of this study was to identify individual characteristics associated with community integration of adults with an intellectual disability.

Method A group of 37 males with high support needs, and who had previously lived in a large institution, participated in the study. Using proxy respondents, data were collected on three measures of community integration, and on the participants' adaptive and maladaptive functioning. Chronological age and years of institutionalisation were also examined for their associations with community integration.

Results Level of daily living skills predicted life circumstances. There were no significant associations among the measures of community integration.

Conclusions The examination of the relationships between participant characteristics and community integration produced similar conclusions to previous research. Only daily living skills scores were uniquely associated with variations in life circumstances. Further research is required to determine whether these findings will be replicated with other cohorts of participants.

'I get by with a little help from my friends' : adults with intellectual disability discuss loneliness

Background This study explored 'loneliness' as experienced by adults with intellectual disability, with 'intermittent' to 'limited' support needs.

Method A measure of loneliness was piloted, and qualitative techniques used to develop a greater understanding of the participants' experience.

Results The Loneliness Scale proved valid and reliable and the participants reported loneliness in ways comparable with the general population.

Conclusions The findings demonstrate the effectiveness of combining quantitative and qualitative techniques to enhance understanding of people's perspective when developing support systems to promote their quality of life. Based on participant perspectives, recommendations are made concerning the issues and types of support families and professionals could consider when seeking to assist people with intellectual disability address loneliness. Further investigation of the effects of differing educational and vocational opportunities on people's post-school social networks appears warranted.

The utility of the personal wellbeing index intellectual disability scale in an Australian sample

Background Subjective wellbeing (SWB) in people with intellectual disabilities has been the focus of increased interest in the identification of support needs and as an outcome measure for interventions and service delivery evaluations. It is therefore important to conduct further research in this area, and to develop appropriate scales to measure SWB.

Methods A new scale, the Personal Wellbeing Index-Intellectual Disability (PWI-ID) was administered to 114 adults with mild (n = 82) or moderate (n = 32) level ID in Victoria, Australia.

Results The PWI-ID demonstrated good reliability and validity. A comparison of the findings with previous research indicates that participants' SWB levels are within the normative range, and are similar to those reported by the general population.

Conclusions The results support the notion that individuals with ID do not experience life quality lower than normal, which can be explained theoretically by the Theory of Subjective Wellbeing Homeostasis. The use of the PWI-ID may ultimately assist in ensuring that the needs of people with ID are being met and inform the planning and delivery of congruent resources and services.

Detecting and treating depression in people with mild intellectual disability : the views of key stakeholders

There is a pressing need for the development of programs for the early identification and treatment of depression in individuals with mild intellectual disability. The aim of this study was to ascertain the perspective of 64 key stakeholders (people with intellectual disability, healthcare professionals, family/caregivers & support workers) regarding the risk factors and characteristics of depression, the support and service needs of individuals with intellectual disability/depression and those who care for them. Findings enhance our understanding of depression and its risk factors in people with mild intellectual disability and endorse the need for the development of screening and intervention programs suitable for delivery by staff in agencies providing services to people with mild intellectual disability.

An investigation into the subjective wellbeing of people with an intellectual disability

This thesis investigated the theory of subjective wellbeing homeostatic control for a sample of New Zealand people with mild to moderate intellectual disability, compared to non-disabled people. This involved three linked quantitative studies that investigated the internal buffers of self-esteem, control and optimism.

The content validity of the behaviour support plan quality evaluation tool (BSP-QEII) and its potential application in accommodation and day-support services for adults with intellectual disability

Background The quality of support provided to people with disability who show challenging behaviour could be influenced by the quality of the behaviour support plans (BSPs) on which staff rely for direction. This study investigated the content validity of the Behaviour Support Plan Quality Evaluation tool (BSP-QEII), originally developed to guide the development of BSPs for children in school settings, and evaluated its application for use in accommodation and day-support services for adults with intellectual disability.

Method A three-round Delphi study involving a purposive sample of experienced behaviour support practitioners (n = 30) was conducted over an 8-week period. The analyses included deductive content analysis and descriptive statistics.

Results The 12 quality domains of the BSP-QEII were affirmed as valid for application in adult accommodation and day-support service settings. Two additional quality domains were suggested, relating to the provision of detailed background on the client and the need for plans to reflect contemporary service philosophy. Furthermore, the results suggest that some issues previously identified in the literature as being important for inclusion in BSPs might not currently be a priority for practitioners. These included: the importance of specifying replacement or alternative behaviours to be taught, descriptions of teaching strategies to be used, reinforcers, and the specification of objective goals against which to evaluate the success of the intervention programme.

Conclusions The BSP-QEII provides a potentially useful framework to guide and evaluate the development of BSPs in services for adults with intellectual disability. Further research is warranted to investigate why practitioners are potentially giving greater attention to some areas of intervention practice than others, even where research has demonstrated these others areas of practice could be important to achieving quality outcomes.