The measurement of subjective wellbeing in people with intellectual disability in Australia

The importance of measuring quality of life, and most particularly the personal wellbeing of people with intellectual disabilities (ID), is now recognized. The measurement of wellbeing is an important component of program evaluation and can assist in the identification and planning of individualized support needs. There remains, however, a need for further research in this area. This paper describes a new scale, the Personal Wellbeing Index Intellectual Disability Scales (PWI-ID), which has been shown to be valid and reliable. Data is presented regarding its use in the measurement of wellbeing in people with ID and the focus of discussion is on its advantages and limitations.

Autonomy Markers in Brazilian Adults With Intellectual Disabilities

The objective of the study was to investigate the relationship between autonomy markers in adult people with intellectual disabilities (ID) and variables such as intelligence quotient (IQ), early aging, and literacy. Participants were 47 adults with ID (33 men; aged 28-58 years with nonspecific etiology, 34 literate). All participants were trainees at the Center for Training of Capacity and Orientation for Employment at Associação de Pais e Amigos dos Excepcionais de São Paulo, São Paulo State, Brazil. They were divided into two age groups: younger (n = 27, mean age 31.85; +/- 2.23), and older (n = 38, mean age 41.84; +/- 5.54). They were administered intelligence scales twice, and answered questions related to social participation, community integration, and choice-making; the percentage of item responses leaning toward self-determination and freedom in choice-making was considered in defining the autonomy score. For both groups, IQ declined from the first to the second assessment. Autonomy scores were more determined by IQ classification than by literacy. Authors concluded that autonomy in people with ID is a multifactorial phenomenon associated with cognitive decline.

Knowledge and understanding of choice diversity of residential care staff working with individuals with intellectual disabilities

The present study aimed to trial the effectiveness of 10 newly developed brief vignettes portraying typical interactions between staff and people with intellectual disabilities in residential care settings to assess the knowledge and understanding of staff about choice diversity, pre- and post-attendance at a staff training workshop. A total of 29 residential staff completed the Vignette Rating Scale and a knowledge questionnaire pre- and post-training. A t- test conducted on the vignettes revealed that respondents identified fewer choices in the post-test vignettes compared to the pre-test vignettes. Results showed no significant difference between the pre- and post-test data on the knowledge questionnaire. The questionnaire revealed a high level of knowledge about choice prior to and following training. The vignettes, however, proved effective in measuring changes in awareness of choice diversity among residential staff following participation in a staff training workshop.

Factors associated with high anticholinergic burden in aging adults with intellectual disabilities:a cross-sectional study

Background: Anticholinergic (AC) medications are associated with cognitive and functional decline in older people, with risk of adverse outcomes increasing with increasing AC exposure. Older people with intellectual disabilities are at increased risk of high AC exposure owing to higher prevalence of multimorbidity, particularly psychiatric morbidities. Objectives: The aims of this study were to determine individual’s AC exposure using the AC cognitive burden (ACB) scale, identify therapeutic classes contributing to burden and determine clinical and demographic factors associated with two levels of AC exposure (ACB score 1–4, ACB 5+). Methods: Cross-sectional (self-report/proxy report)medication data were drawn from Wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing, a study on ageing of 753nationally representative people with ID aged over40 randomly selected from the National Intellectual Disability Database. Medication data were available for 736 (98%). Each individual’s cumulative AC exposure was calculated using the ACB. Multinomiallogistic regression was performed identifying clinical and demographic factors associated with ACB score1–4, and ACB 5+. Results: In the eligible population of 736 participants(mean (±SD) age 54.1 (±8.8) years,55% female), 522(70.9%) were exposed to an ACB medicine (ACB 1+); 214 (29%) had an ACB score of 5+; mean total ACB score= 4.5 (±3.0). Antipsychotics accounted for35.6% of the cumulative ACB score. Age over 65yearswas associated with increased likelihood of both levels of AC exposure (ACB 1–4—adjusted OR 3.28; 95%CI 1.49–7.25, ACB 5+—adjusted OR 3.08; 95%CI1.21–7.63) and having a mental health condition(ACB 1–4—adjusted OR 9.79; 95%CI 5.63–17.02, ACB 5+—adjusted OR 23.74; 95%CI 12.29–45.83). Conclusions: Using a simple cumulative measure proved an effective means to capture total burden and established that AC exposure was high and associated with older age and mental health morbidity. This highlights need for comprehensive medication reviews for older people with intellectual disabilities.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

Service providers' perceptions of active ageing among older adults with lifelong intellectual disabilities

Background: Considerable attention is currently being directed towards both active ageing and the revising of standards for disability services within Australia and internationally. Yet, to date, no consideration appears to have been given to ways to promote active ageing among older adults with intellectual disabilities. Methods: Semi-structured interviews were conducted with 16 Australian professional direct-care support staff (service providers) about their perceptions of ageing among older adults with lifelong intellectual disabilities and what active ageing might entail for an individual from this population who is currently under their care, in both the present and future. Data were analysed against the six core World Health Organization active ageing outcomes for people with intellectual disabilities. Results: Service providers appeared to be strongly focused on encouraging active ageing among their clients. However, their perceptions of the individual characteristics, circumstances and experiences of older adults with intellectual disabilities for whom they care suggest that active ageing principles need to be applied to this group in a way that considers both their individual and diverse needs, particularly with respect to them transitioning from day services, employment or voluntary work to reduced activity, and finally to aged care facilities. The appropriateness of this group being placed in nursing homes in old age was also questioned. Conclusion: Direct-care staff of older adults with intellectual disabilities have a vital role to play in encouraging and facilitating active ageing, as well as informing strategies that need to be implemented to ensure appropriate care for this diverse group as they proceed to old age.

Vulnerability to loneliness in people with intellectual disability: an explanatory model

Research with typically developing groups has identified loneliness as a significant predictor of a range of physical and mental health problems. This paper reviews research about loneliness in children and adults with intellectual disability. Although a considerable body of evidence has highlighted the difficulties individuals with intellectual disability have with friendships, there is a relative scarcity of research focused explicitly on loneliness. The available evidence suggests that up to half of those with intellectual disability are chronically lonely, compared with around 15-30% of people in the general population. The cognitive, physical and mental health problems already associated with intellectual disability are likely to be compounded by experiences of chronic loneliness. We argue that people with intellectual disability are highly vulnerable to loneliness and present a theoretical model of vulnerability that comprises three reciprocally influencing domains: social attitudes and expectations; opportunities and experiences; and skill deficits associated with intellectual disability. We propose that societal views which have traditionally devalued and stigmatised those with intellectual disability limit their opportunities for experiencing social and emotional connectedness with others. Individual skill deficits in areas such as communication, self-regulation and social understanding, as well as functional difficulties associated with intellectual disability, also potentially influence the opportunities and experiences of people with intellectual disability, both directly and via multiple layers of the social context. In turn, limited opportunities will entrench particular skill deficits and reinforce negative attitudes towards intellectual disability. Future research about loneliness and intellectual disability needs to address the difficulties of measuring emotional isolation in this population, as well as the possibility that people with intellectual disability may understand, experience and interpret loneliness somewhat differently from others. The model proposed in this paper provides a starting point for developing a more sophisticated understanding of the experience of loneliness for individuals with intellectual disability.

Experiences of leaving prison for people with intellectual disability

Purpose – The support given to prisoners when they leave prison has a bearing on their success in starting a new life and on community safety. This paper aims to examine the community re-entry experiences of ten people with an intellectual disability in Queensland, Australia. Design/methodology/approach – The findings in this paper are part of a wider study on the life stories of ex-prisoners with an intellectual disability. Seven male and three female participants with intellectual disability were interviewed using a semi-structured life story method. Interviews were respectful of the communication styles of participants and involved multiple interview sessions, ranging from two to nine interviews per person. Data were analysed using narrative and thematic analysis with the assistance of NVivo 8 software. Findings – Participants found the process of leaving prison an emotional event, often clouded with both confusion about when release was to occur, and uncertainly as to what they could expect on the outside. The need for concrete information and coordinated hands-on assistance in negotiating supports in the community have significant implications for correctional and community services. Originality/value – This study captures the perspectives of people with intellectual disability on community re-entry. These perspectives are often overlooked in policy and practice developments in the field of corrections. Yet without understanding this group, the field is unable to address their particular needs.

Relationship between Barthel index with physical tests in adults with intellectual disabilities

We usually find low levels of fitness condition affect other aspects of living for people with ID like dependency in carrying out activivities of daily living. Therefore we find high levels of dependency in activities of daily living due to poor fitness condition. The aim of the study is to explore the criterion validity of the Barthel index with a physical fitness test. An observational cross-sectional study was conducted. Data from the Barthel index and a physical fitness test were measured in 122 adults with intellectual disability. The data were analysed to find out the relationship between four categories of the physical fitness test and the Barthel index. It needs to be stressed that the correlations between the Barthel index and leg, abdominal and arm strength can confirm that these physical test are predictive of the Barthel index. The correlations between the balance variables as functional reach and single-leg stance with eyes open shown relationships with Barthel Index. We found important correlations between the physical fitness test and the Barthel index, so we can affirm that some physical fitness features are predictor variables of the Barthel index.

The doctrine of necessity and the detention and restraint of people with intellectual impairment: Is there any justification?

In Australia, the legal basis for the detention and restraint of people with intellectual impairment is ad hoc and unclear. There is no comprehensive legal framework that authorises and regulates the detention of, for example, older people with dementia in locked wards or in residential aged care, people with disability in residential services or people with acquired brain injury in hospital and rehabilitation services. This paper focuses on whether the common law doctrine of necessity (or its statutory equivalents) should have a role in permitting the detention and restraint of people with disabilities. Traditionally, the defence of necessity has been recognised as an excuse, where the defendant, faced by a situation of imminent peril, is excused from the criminal or civil liability because of the extraordinary circumstances they find themselves in. In the United Kingdom, however, in In re F (Mental Patient: Sterilisation) and R v Bournewood Community and Mental Health NHS Trust, ex parte L, the House of Lords broadened the defence so that it operated as a justification for treatment, detention and restraint outside of the emergency context. This paper outlines the distinction between necessity as an excuse and as a defence, and identifies a number of concerns with the latter formulation: problems of democracy, integrity, obedience, objectivity and safeguards. Australian courts are urged to reject the United Kingdom approach and retain an excuse-based defence, as the risks of permitting the essentially utilitarian model of necessity as a justification are too great.

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives
Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods
A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results
Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions
This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

Ethics in sexual behavior assessment and support for people with intellectual disability

Sexuality is an issue of equality, rights, and ethics, especially when it comes to the sexuality of people with intellectual and developmental disabilities. This paper offers a discussion of ethics related to the assessment and intervention supports of sexual behavior in people with intellectual and developmental disabilities. A brief history of sexuality and disability is presented. Issues of sexual abuse of people with intellectual and developmental disabilities and the laws related to sterilization, pornography, sexual rights, and consent are explored. Finally, specific ethical concerns related to intervention by behavior analysts in the realm of sexual behavior are examined.

Supporting and maximizing communication between individuals with intellectual disabilities and health care providers

The goal of the present study was to examine the barriers to access in health services faced by individuals with intellectual disabilities (ID), as well as the nature of communication between people with ID and those who are directly involved in supporting their health and well being. The study included in-depth interviews with five adults who have been identified as having ID and are supported by a community agency, five community agency support staff and four physicians who are specialists in supporting people who have ID. A qualitative content analysis approach facilitated the comparative exploration of key themes that each participant group saw as positive or negative influences on health care access and on effective health care communication. Themes drawn from the findings emphasize the unique roles each of these groups plays within the dialogical framework of the health care encounter. Of particular importance to informants was the issue of people with ID being seen as full participants in their own health care who, like all people, are unique individuals and not simply members of an identified or marginalized group. Participants across groups emphasized the need for the health care recipient to be known as an individual who is an expert in her/his own health and well being and, therefore, entitled to full participation with the support of but not control by others.

The practical application of a meta-analysis of deinstitutionalization : adaptive behaviour outcomes and the piloting of a transitional questionnaire for adults with intellectual disabilities

This investigation examined the effects of de institutionalization on the adaptive behaviour and adjustment of adults with intellectual disabilities (ID). In study 1, a meta-analysis was conducted with 23 studies on deinstitutionalization adaptive behaviour outcomes. Deinstitutionalization was associated with modest improvements in adaptive behaviour however outcomes varied across adaptive behaviour domains and other substantive variables. Clinical and service implications of these results were explicated. Noting the trends from the meta-analysis, study 2 used this information in refining and piloting an Agency Transition Survey used to evaluate community transitions for persons with ID. Information derived from the survey was found to be valuable and adequate for the effective evaluation of transitional success. Potential applications of the survey and meta-analysis results were illustrated.

Teaching persons with intellectual disabilities and limited receptive and expressive communication how to recognize and assert their human rights

Persons with intellectual disabilities (ID) are far more likely to be abused than the general population, but there is little research on teaching people with ID about their rights. The goal of this study was to teach four participants with ID and limited communication abilities about their human rights by training them on specific rights topics. The training program included icebreaker activities, instruction on rights concepts, watching and answering questions about videotaped scenarios of rights restrictions, watching and answering questions about role pl ay scenarios of rights restrictions, and responding to brief, low risk in situ rights restrictions imposed by the researchers. Participant performance did not improve significantly or consistently from baseline to training on the questions asked about the videotaped or the role play scenarios, but two of three participants demonstrated defmite improvements in responding to in situ rights restrictions.