Severity of cognitive disability and mental health court determinations about fitness to stand trial.

BACKGROUND: Little is known about the socio-demographic, clinical and legal determinants of mental health court decisions of unsoundness of mind and unfitness to stand trial for people with cognitive disability. We aimed to estimate the association between severity of cognitive disability and mental health court determinations of unsoundness or unfitness and describe the socio-demographic, clinical and legal factors that predict these determinations. METHODS: Case file data were extracted on 92 individuals who had a criminal case referred to the Queensland Mental Health Court between 1 January 2013 and 31 December 2014 due to cognitive disability. We fit a modified multivariable Poisson regression model to estimate the association between severity of cognitive impairment and mental health court determination, controlling for socio-demographic, clinical and legal factors. RESULTS: Adjusting for covariate effects, severity of cognitive impairment was positively associated with being found unfit to stand trial (adjusted prevalence risk ratio = 1.57; 95% confidence interval: 1.07, 2.33; P = 0.023), and comorbid psychotic disorder predicted an increased risk of being found unsound of mind at the time of offence (adjusted prevalence risk ratio = 3.63; 95% confidence interval: 1.38, 9.54; P = 0.009) by the Queensland Mental Health Court. CONCLUSIONS: Severity of cognitive disability is associated with determinations of unfitness but does not predict determinations of unsoundness in the Queensland Mental Health Court. Psychiatric assessments of cognitive impairment play a pivotal role in mental health court determinations for people with cognitive disability.

Intellectual disability and patient activation after release from prison: a prospective cohort study.

BACKGROUND: Intellectual disability and patient activation may be important drivers of inequities in health service access and health outcomes for people with intellectual disability transitioning from prison to the community. We assessed the association between intellectual disability and patient activation after prison release and examined whether this association varied, depending on whether intellectual disability was identified prior to prison release. METHODS: Overall, 936 prisoners were screened for intellectual disability by using the Hayes Ability Screening Index and completed the Patient Activation Measure (PAM) within 6 weeks of prison release and again at 1, 3 and 6 months post-release. We estimated the association between intellectual disability status and PAM scores by using a multilevel linear model, adjusting for sociodemographic, behavioural, health and criminogenic factors. We used propensity score matching to estimate the impact of being identified with intellectual disability prior to release from prison on the change in mean PAM score after prison release. RESULTS: Compared with those who screened negative for intellectual disability, ex-prisoners who screened positive, both with and without prior identification of intellectual disability, had significantly decreased mean PAM scores [(B = -4.3; 95% CI: -6.3, -2.4) and (B = -4.5; 95% CI: -6.8, -2.3), respectively] over 6 months of follow-up. Among those who reported being identified with intellectual disability prior to release from prison, a significant increase in PAM score at the 6-month follow-up interview (B = 5.89; 95% CI: 2.35, 9.42; P = 0.001) was attributable to being identified with intellectual disability prior to release. CONCLUSIONS: Ex-prisoners screening positive for possible intellectual disability have decreased patient activation for at least 6 months after release from prison. However, individuals whose possible intellectual disability is unidentified appear to be particularly vulnerable. Incarceration is a pivotal opportunity for the identification of intellectual disability and for initiating transitional linkages to health and intellectual disability-specific community services for this marginalised population.

Inter-rater reliability of the Hayes Ability Screening Index in a sample of Australian prisoners.

BACKGROUND: Reliable ascertainment of intellectual disability (ID) is important to identify those with special needs, in order for those needs to be met in the criminal justice system. Although the Hayes Ability Screening Index (HASI) is valid and widely used for the identification of possible ID, the risk of inter-rater bias between researchers when scoring the HASI has not yet been established. The current paper estimates the inter-rater reliability of the HASI in a sample of Indigenous and non-Indigenous prisoners in Western Australia. METHODS: We estimated intra-class correlation coefficients (ICC) for the consistency of agreement among three blinded raters using a two-way random-effects model assessing the inter-rater agreement of the HASI. Kappa was also estimated for the dichotomous HASI screening threshold outcome between the raters. RESULTS: The HASI exhibited very good within-subject consistency of agreement for Section B (ICC = 0.95; 95%CI:0.94-0.96), Section C (ICC = 0.97; 95%CI: 0.96-0.98) and Section D (ICC = 0.90; 95%CI: 0.87-0.92) subscales and for the total scaled score (ICC = 0.97; 95%CI: 0.96-0.98). The inter-rater reliability of the dichotomous adult ID screening threshold (<85) was also very good (Kappa = 0.95). CONCLUSIONS: The current study provides new evidence that the HASI has a low risk of bias from between-rater scoring and can be reliably scored by both non-clinicians and clinicians with little training, when administered in prison settings. Pre-scoring training should focus on the more subjective 'clock-drawing' section, in order to maximise inter-rater reliability.

General practitioners' views on perceived and actual gains, benefits and barriers associated with the implementation of an Australian health assessment for people with intellectual disability.

BACKGROUND: Health assessments for people with intellectual disability have been implemented in the UK, New Zealand and Australia, and have led to improved health outcomes. The Comprehensive Health Assessment Program (CHAP) has been shown to improve the health of people with intellectual disability. Similar to other health assessments, it is designed to address healthcare needs, many of which are often overlooked in this population, through better communication between the general practitioner (GP), support worker and the person with intellectual disability. This study investigates GP views of the perceived and actual benefits, gains and barriers associated with its uptake and use in practice. METHOD: As part of a larger randomised controlled trial of the CHAP, 46 GPs in Queensland, Australia, completed two telephone interviews that included open-ended questions about their perceptions of the health assessment. The GPs were enrolled in the intervention arm of the trial. Interviews took place at commencement and conclusion of the trial to gain the views of GPs as they experienced using the CHAP. Thematic analysis was used to identify key themes and patterns from the GP responses. RESULTS: Four themes were identified: better healthcare and uncertain benefits captured GP perceptions of the potential gains associated with use of the CHAP, while two further themes, organisational barriers in the general practice setting and engagement across the healthcare triad highlighted strengths and barriers related to implementation. Anticipated concerns about time raised by GPs at commencement of the trial were borne out in practice, but concerns about communication and cooperation of people with disabilities were not. Matters associated with support worker engagement emerged as an area of concern. CONCLUSIONS: GPs perceive the CHAP as a structured and comprehensive approach to the detection of medical problems as well as an aid in overcoming communication barriers between the doctor and the person with disability. Our findings suggest that some GPs may find it difficult to predict the benefits of using health assessments such as the CHAP. Achieving optimal uptake is likely to require attention at policy and systems levels to address: GP time constraints in providing healthcare to this population; enhancement of support worker training and organisational structures to encourage comprehensive health assessment and follow-up activities; and GP awareness of the improved health outcomes shown to derive from the use of comprehensive health assessments.

Physical health outcomes in prisoners with intellectual disability: a cross-sectional study.

BACKGROUND: People with intellectual disability (ID) in the general population and people in prison experience unrecognised medical conditions and inadequate disease prevention. Among prisoners, those with an ID may be particularly disadvantaged. The aim of this study was to identify demographic, health and health-related characteristics of adult prisoners who screened positive for ID. METHODS: Cross-sectional data were collected via face-to-face administration of a structured questionnaire in seven prisons in Queensland, Australia, between 2008 and 2010. Participants were adult prisoners within 6 weeks of release from custody. We identified ID using a pragmatic screening tool. Prisoners who scored <85 on the Hayes Ability Screening Index and either (a) reported having attended a special school or (b) reported having been diagnosed with an ID were considered to have screened positive for ID. We compared the characteristics of participants who screened positive and negative for ID using univariable and multivariable logistic regression. RESULTS: Screening positive for ID was associated with younger age, identifying as Indigenous and lower educational achievement. Prisoners who screened positive for ID were more likely to have been diagnosed with medical conditions such as heart disease (odds ratio; 95% confidence interval = 2.1; 1.0-4.2) and hearing problems (2.2; 1.3-3.7), after adjustment for age, sex, education level and Indigenous status. Screen-positive prisoners were less likely to have received preventive care interventions such as testing for hepatitis A infection (0.4; 0.2-0.6), and immunisation for tuberculosis (0.4; 0.2-0.8). Prisoners with possible ID were more likely to be obese (1.7; 1.1-2.7). CONCLUSIONS: Adult prisoners who screen positive for ID have worse health outcomes than their non-disabled peers. An improved understanding of physical health characteristics prior to release can direct treatment and support pathways out of the criminal justice system and inform transitional planning of health services for this profoundly disadvantaged group.

Health advocacy: a vital step in attaining human rights for adults with intellectual disability.

BACKGROUND: People with intellectual disability (ID) experience health inequity compared with the general population, a key contributing factor being disparities in social determinants of health. The enactment of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) provides a platform for the progression and promotion of health and other interconnected rights to address barriers to the highest attainable standard of health for this populace. Rights can be brought to life through advocacy efforts. This paper explores the meaning, perceptions and experiences of advocacy by family members and paid support workers of adults with ID and locates the findings within a health and human rights discourse. METHODS: As part of a larger randomised controlled trial, 113 parents and 84 support workers of adults with ID completed a telephone interview that included open-ended questions about their understanding and experiences of advocacy. Thematic analysis was used to identify relevant themes. RESULTS: Five key themes were identified. The first underscored how advocacy to 'speak up' for the person with ID is integral to both parent and support worker roles. The second and third themes considered the contexts for advocacy efforts. Access to quality health care was a core concern, along with advocacy across other areas and sectors to address the person's wider psychosocial needs. The remaining themes highlighted the many dimensions to advocacy, including differences between parent and support worker views, with parental advocacy being an expression of 'caring' and support workers motivated by a 'duty of care' to protect the individual's 'rights'. CONCLUSION: Parent and support worker advocacy provides one means to address the social determinants of health and fulfilment of health rights of and for people with ID. Policy and practice in the context of governmental obligation under the CRPD should support advocacy and make health rights the reality not rhetoric for this group of men and women.

Audit and comprehensive health assessment programme in the primary healthcare of adults with intellectual disability: a pilot study.

International research has demonstrated significant shortcomings in the health of adults with intellectual disability (ID). Because general practitioners (GPs) are the main providers of primary healthcare for this population, strategies to improve general practice care are an important aspect of rectifying these shortcomings. The present pilot study aimed to determine the effect of various interventions on health maintenance activities and to assess their acceptability to GPs, with a view to informing larger scale studies. The GPs were recruited through an earlier questionnaire-based postal survey. The GPs identified all their adult patients with ID, then obtained consent for participation from three patients randomly selected by the investigators. The GPs completed two self-evaluation forms and case note audits 12 months apart, read a synopsis of the relevant literature provided by the researchers, and completed a comprehensive health assessment (CHA) of their three patients. Forty-five GPs agreed to participate in the CHA programme (CHAP), and 15 completed the project. Thirty-eight patients completed the project. The number of patient-GP dyads who completed the project was too small to demonstrate statistically significant changes in health issues over time. The GPs found that the synopsis of the literature was the best intervention for increasing knowledge and was also the most practical to use in general practice. The CHAP was the intervention that prompted the most action from the GP which would not have been undertaken otherwise. The CHAP appeared to provide a superior review process compared to the other interventions used in the present study. The numbers of health maintenance activities found to be overdue and the number of health issues detected as a result of the process were considerable. The CHAP served as a communication tool and an educative instrument, providing a basis for future studies and strategies to improve the general practice care of adults with ID.

Primary health care and people with an intellectual disability: the evidence base.

There is growing awareness of the importance of evidence-based medicine in guiding health care delivery. This paper reviews the evidence pertinent to the delivery of primary health care to people with an intellectual disability. Research concerning issues of health status, specialist knowledge of health care, and barriers and solutions to health care delivery for people with an intellectual disability is presented and discussed. Recommendations for future evidence-based research are made, including suggested areas of importance.

The general practice care of people with intellectual disability: barriers and solutions.

A questionnaire exploring general practitioners' (GPs') perceptions of the barriers and solutions to providing health care to people with intellectual disability was sent to 912 randomly selected GPs throughout Australia. A response rate of 58% was obtained. Results indicated that numerous barriers compromise the quality of health care able to be provided to people with intellectual disability. Communication difficulties with patients and other health professionals, and problems in obtaining patient histories stood out as the two most significant barriers. A range of other barriers were identified, including GPs' lack of training and experience, patients' poor compliance with management plans, consultation time constraints, difficulties in problem determination, examination difficulties, poor continuity of care, and GPs' inadequate knowledge of the services and resources available. General practitioners also suggested numerous solutions to these barriers, and emphasized the need for increased opportunities for education and training in intellectual disability. The GPs showed an overwhelming willingness to be involved in further education. Other major solutions included increasing consultation duration or frequency, proactively involving families and carers in patients' ongoing health care, and increasing remuneration.