Impact of disability services on mental health service utilization in adults with intellectual disability.

BACKGROUND: Can disability support services (DS) facilitate access to mental health services (MHS) for people with intellectual disability? This study utilized 10 years of data from 6,260 persons in NSW who had received DS and specific MHS to quantify the relationship between DS utilization and MHS utilization in adults with intellectual disability and co-existing mental illness. RESULTS: Receipt of DS was associated with greater odds of accessing community mental health (CMH) services (36%, 95% CI 29%-43%) but not psychiatric admissions. Age, sex and social disadvantage did not affect the odds of psychiatric admission or CMH use. Individuals living in a remote area had greater odds of CMH use and lesser odds of psychiatric admission. CONCLUSIONS: Receipt of DS was associated with greater CMH but not psychiatric hospital utilization in people with intellectual disability and co-existing mental illness.

Ambulatory mental health data demonstrates the high needs of people with an intellectual disability: results from the New South Wales intellectual disability and mental health data linkage project.

OBJECTIVE: To investigate the ambulatory mental health service profile of persons with intellectual disability (ID) in a representative sample of New South Wales (NSW). METHODS: A statistical linkage key was used to link the Disability Services Minimum Data Set (DS-MDS) and a community mental health services dataset (MH-COM) for a representative area of NSW for the period 2005-2010. Linkage was undertaken in four NSW local health districts (LHDs), covering 36.7% of the NSW population. The mental health profiles and service use characteristics of people with an ID were compared to mental health service users without an ID. RESULTS: Of the 89,262 people in the MH-COM over this 6-year period, 1,459 people (1.6 %) were identified as having an ID. Compared to those without an ID, people with an ID were more likely to have psychotic disorders, developmental disorders and personality disorders, and more than twice as likely to have an 'unknown' diagnosis. Compared to those without an ID, people with an ID were less likely to have depressive disorders, adjustment disorders and other disorders. Service use profiles revealed that people with an ID had 1.6 times more face-to-face contacts, and a total face-to-face contact time which was 2.5 times longer than people without an ID. CONCLUSIONS: Ambulatory mental health data from NSW indicates that people with an ID receive care for a distinct range of mental disorders, and experience uncertainty regarding their diagnosis. People with an ID have higher service needs which require recognition and the allocation of specific resources. Such data provide a suitable baseline for future evaluation of the impact of ambulatory mental health reforms for people with an ID.

Mortality among a Cohort of Persons with an Intellectual Disability in New South Wales, Australia.

OBJECTIVES: The main objective of the study was to compare mortality for people with an intellectual disability (ID) to the general population in New South Wales (NSW), Australia. A second objective was to provide mortality data for people with an intellectual disability from NSW in a standardized format, which allows for international comparisons of the mortality of people with an intellectual disability. DESIGN AND SETTING: The study was a longitudinal cohort study linking retrospective data from the population databases of the NSW Department of Ageing, Disability and Home Care (ADHC) Intellectual Disability Services Dataset (intellectual disability cohort) to the mortality data set of the NSW Registry of Births, Deaths and Marriages (RBDM) for the period 1 June 2005 to 31 December 2011. PARTICIPANTS: The two groups of interest for this study were persons with an intellectual disability recorded in the intellectual disability cohort (953 deaths among 42,219 persons over 270,649 person-years of observation) and the rest of the NSW population (312,649 deaths among over 7,218,529 persons [2011 population] and 45,818,946 person-years of observation). MAIN OUTCOME MEASURES: In this study, we compared the intellectual disability cohort with the rest of the NSW population using age-adjusted death rates (ADRs), standardized mortality ratios (SMRs) and age standardized death rates (ASDRs) based upon the World Health Organization (WHO) standard population. RESULTS: We found a significantly higher mortality in a cohort of people with an intellectual disability compared to the rest of the NSW population. The intellectual disability cohort compared to the rest of the NSW population had an SMR of 2.48 for all ages and an SMR of 3.15 for those aged 5-69 years. We also found an SMR for females (4.26) with an intellectual disability that was significantly higher than that for males (2.52) with an intellectual disability. The ASDR for the intellectual disability cohort was 4.04 (deaths per 1000) and the ASDR for the rest of the NSW population was 1.58, giving a comparative mortality ratio of 2.55. CONCLUSIONS: Our findings indicate excess mortality of people with an intellectual disability when compared to the general population. They also indicate that females with an intellectual disability have a higher relative mortality compared to female same-aged general population peers, and also males with an intellectual disability, a finding replicated in other similar cohort studies. For international comparison using the WHO standard population, our intellectual disability cohort (ages 5-69 years) had a mortality of 4.04 deaths per 1000.

Predictors and outcomes of recognition of intellectual disability for adults during hospital admissions: A retrospective data linkage study in NSW, Australia.

Adults with intellectual disability have high health care needs. Despite frequent contact with health services, they often receive inadequate health care. One method to improve health care delivery is reasonable adjustments, that is, the adaptation of health care delivery such that barriers to participation are removed for the person with disability. A starting point for the provision of reasonable adjustments is recognition of intellectual disability during the health care contact. To determine rates and predictors of the recognition of intellectual disability during hospital admissions, and its impact on admission metrics, we examined a population of adults with intellectual disability identified from disability services datasets from New South Wales, Australia between 2005 and 2014. Recognition of intellectual disability was determined by the recording of an International Classification of Diseases 10th revision (ICD-10) diagnostic code for intellectual disability during a given hospital admission. We examined how recognition of intellectual disability related to length of hospital episodes. We found an overall low rate of recognition of intellectual disability (23.79%) across all hospital episodes, with the proportion of hospital episodes recognising intellectual disability decreasing from 2005-2015. Admissions for adults with complex health profiles (e.g., those with many comorbidities, those with Autism Spectrum Disorder, and those admitted for urgent treatment) were more likely to recognise intellectual disability, but admissions for adults with complexity in other domains (i.e., for those in custody, or those with drug and alcohol disorders) were less likely to recognise intellectual disability. Recognition of intellectual disability was associated with longer episodes of care, possibly indicating the greater provision of reasonable adjustments. To improve the recognition of intellectual disability for adults during health service contacts, we advocate for the implementation of targeted initiatives (such as a nationwide disability flag to be included in health service records) to improve the provision of reasonable adjustments.

Health and wellbeing of people with intellectual disability in New South Wales, Australia: a data linkage cohort.

PURPOSE: People with intellectual disability (ID) experience high rates of physical and mental health problems, while access to appropriate healthcare is often poor. This cohort was established to develop an epidemiological profile related to the health, health service use, disability services, mortality and corrective services records of people with ID. PARTICIPANTS: The cohort contains 92 542 people with ID (40% females) with a median age of 23 years (IQR: 12-43 years) and 2 004 475 people with a neuropsychiatric or developmental disorder diagnosis (50% females) with a median age of 51 years (IQR: 29-73 years) from New South Wales, Australia. The whole sample contains records for 2 097 017 individuals with most data sets spanning financial years 1 July 2001 to 30 June 2016. A wide range of data from linked population data sets are included in the areas of disability, health, corrective services and targeted specialist support services in public schools, Public Guardian and Ombudsman services. FINDINGS TO DATE: This study includes one of the largest cohorts of people with ID internationally. Our data have shown that the presence of ID is significantly associated with emergency department presentations and psychiatric readmissions after the first psychiatric admission based on a subcohort of people with a psychiatric admission. Adults with ID experience premature mortality and over-representation of potentially avoidable deaths compared with the general population. FUTURE PLANS: Within the health service system, we will examine different components, that is, inpatient, emergency adult services, children and younger people services and costs associated with healthcare as well as mortality, cause and predictors of death. The neuropsychiatric and developmental disorders comparison cohort allows comparisons of the physical health, mental health and service use profiles of people with ID and those with other neuropsychiatric disorders.

Cohort profile: a data linkage cohort to examine health service profiles of people with intellectual disability in New South Wales, Australia.

PURPOSE: People with intellectual disability are a minority group who experience poorer physical and mental health than the general population and have difficulty accessing healthcare services. There is lack of knowledge about healthcare service needs and gaps experienced by people with intellectual disability. This study aims to interrogate a large linked administrative data set containing hospital admissions, presentations to emergency departments (ED) and mortality data to provide evidence to inform the development of improved health and mental health services for this population. PARTICIPANTS: A retrospective cohort of people with intellectual disability (n=51 452) from New South Wales (NSW), Australia, to explore health and mental health profiles, mortality, pattern of health service use and associated costs between 2005 and 2013. The cohort is drawn from: the Disability Services Minimum Data Set; Admitted Patients Data Collection; Emergency Department Data Collection, Australian Bureau of Statistics Death Registry and Registry of Births, Deaths and Marriages. Mental health service usage among those with intellectual disability will be compared to a cohort of people who used mental health services (n=1 073 139) and service usage other than for mental health will be compared with published data from the general population. FINDINGS TO DATE: The median age of the cohort was 24 at the time of the last hospital admission and 21 at the last ED presentation. The cohort has a higher proportion of men than women and accounts for 0.6% of the NSW population in 2011. Over 70% had up to 5 ED presentations and hospitalisations between 2005 and 2012. A high proportion of people with intellectual disability live in the most disadvantaged neighbourhoods. FUTURE PLANS: Results will be used to inform the development of more responsive healthcare, including improved interactions between health, social and disability supports. More generally, the results will assist the development of more inclusive policy frameworks for people with intellectual disability.