A comprehensive systematic literature review of the burden of illness of Lennox-Gastaut syndrome on patients, caregivers, and society.

Fully elucidating the burden that Lennox-Gastaut syndrome (LGS) places on individuals with the disease and their caregivers is critical to improving outcomes and quality of life (QoL). This systematic literature review evaluated the global burden of illness of LGS, including clinical symptom burden, care requirements, QoL, comorbidities, caregiver burden, economic burden, and treatment burden (PROSPERO ID: CRD42022317413). MEDLINE, Embase, and the Cochrane Library were searched for articles that met predetermined criteria. After screening 1442 deduplicated articles and supplementary manual searches, 113 articles were included for review. A high clinical symptom burden of LGS was identified, with high seizure frequency and nonseizure symptoms (including developmental delay and intellectual disability) leading to low QoL and substantial care requirements for individuals with LGS, with the latter including daily function assistance for mobility, eating, and toileting. Multiple comorbidities were identified, with intellectual disorders having the highest prevalence. Although based on few studies, a high caregiver burden was also identified, which was associated with physical problems (including fatigue and sleep disturbances), social isolation, poor mental health, and financial difficulties. Most economic analyses focused on the high direct costs of LGS, which arose predominantly from medically treated seizure events, inpatient costs, and medication requirements. Pharmacoresistance was common, and many individuals required polytherapy and treatment changes over time. Few studies focused on the humanistic burden. Quality concerns were noted for sample representativeness, disease and outcome measures, and reporting clarity. In summary, a high burden of LGS on individuals, caregivers, and health care systems was identified, which may be alleviated by reducing the clinical symptom burden. These findings highlight the need for a greater understanding of and better definitions for the broad spectrum of LGS symptoms and development of treatments to alleviate nonseizure symptoms.

The Association of the Medicaid 1915(c) Home and Community-Based Services Waivers with Emergency Department Utilization among Youth with Autism Spectrum Disorder.

Using the 2008-2013 Medicaid Analytic eXtract files, this retrospective cohort study was to evaluate the effect of Medicaid home and community-based services (HCBS) waiver programs on emergency department (ED) utilizations among youth with autism spectrum disorder (ASD). Our study showed that the annual ED utilization rates were 13.5% and 18.8% for individuals on autism specific and intellectual and developmental disabilities (IDD) waivers respectively, vs. 28.5% for those without a waiver. Multivariable logistic regression showed that, compared to no waiver, autism specific waivers (adjusted odds ratio: 0.62; 95% Confidence Interval: [0.58-0.66]) and IDD waivers (0.65; [0.64-0.66]) were strongly associated with reduced ED. These findings suggest that HCBS waivers are effective in reducing the incidence of ED visits among youth with ASD.

Public mental health service use by people with intellectual disability in New South Wales and its costs.

OBJECTIVES: To describe the population characteristics of people with intellectual disability in New South Wales; to quantify and compare public mental health service use and costs for people with and without intellectual disability in NSW during 2014-15. DESIGN: Retrospective cohort data linkage analysis. SETTING, PARTICIPANTS: People using publicly funded in- or outpatient (admitted or non-admitted) mental health services in NSW, 2014-15. MAIN OUTCOME MEASURES: Numbers of bed days (inpatient mental health services), and treatment days (ambulatory mental health); costs of publicly funded mental health services. RESULTS: People with intellectual disability comprised 1.1% of the NSW population, but 6.3% of people who used public mental health services; 12% of public mental health costs during 2014-15 were for people with intellectual disability. Compared with metropolitan local health districts (LHDs), overall public mental health service costs were lower for rural and regional LHDs (adjusted incidence rate ratio [aIRR], 0.8; 95% CI, 0.8-0.9) and higher for specialty networks (aIRR, 1.2; 95% CI, 1.1-1.3). Per person costs for people with intellectual disability were higher than for those without intellectual disability (aIRR, 2.6; 95% CI, 2.2-3.0). CONCLUSION: People with intellectual disability use public mental health services to a greater degree than other people. They should be explicitly considered by all tiers of mental health policy and service planning in Australia. Population health planning for the needs of people with disabilities would be assisted by including disability identifiers in all health administrative data sets.

States' use of Medicaid to meet the needs of autistic individuals.

OBJECTIVE: To assess the use of Medicaid programs, including waivers, to address the needs of aging autistic individuals. DATA SOURCES: We gathered data on Medicaid programs in place between 2004 and 2015 for 50 states and the District of Columbia from the Centers for Medicare and Medicaid Services website, by contacting state Medicaid administrators and advocacy groups, and by reviewing the Medicaid Analytic eXtract Waiver Crosswalk. STUDY DESIGN: This retrospective analysis classified each Medicaid program and documented state changes over time in eligibility criteria: those serving autism spectrum disorder only, autism spectrum disorder or intellectual disability, and intellectual disability only. DATA COLLECTION/EXTRACTION METHODS: We captured age and diagnosis eligibility criteria for Medicaid programs serving any of the three target groups. PRINCIPAL FINDINGS: A total of 269 Medicaid programs met our criteria and most programs (51%) were 1915(c) waivers. The number of autism-specific 1915(c) waivers grew more than fivefold during the study period, outpacing increases in waivers serving individuals with intellectual disability. CONCLUSIONS: States varied in their use of Medicaid to address the needs of the aging autism population. Further study of characteristics of states that changed their Medicaid programs, and of the health care use and outcomes associated with these changes, are needed to identify opportunities to replicate effective approaches to meeting the needs of this population.

Attention-deficit/hyperactivity disorder and occupational outcomes: The role of educational attainment, comorbid developmental disorders, and intellectual disability.

BACKGROUND: Individuals with ADHD are at increased risk for poor occupational outcomes. Educational attainment and psychiatric comorbidity may be important contributing factors for these outcomes, but the role of these factors is not well characterized. This study aimed to investigate the associations between ADHD and occupational outcomes, and to examine the influence of educational attainment, comorbid developmental disorders and intellectual disability on these associations. METHODS: We linked the Swedish population graduating from compulsory school 1998-2008 (N = 1.2 millions) to population-wide register-based data on clinical psychiatric diagnoses and medications, objective annual measures of educational, and occupational outcomes. Individuals were followed for between 6 to 16 years after graduation. RESULTS: Individuals with ADHD had annually on average 17 percent lower income, ratio = 0.83 (95% CI 0.83-0.84), 12.19 (11.89-12.49) more days of unemployment, and a higher likelihood of receiving disability pension, odds-ratio = 19.0 (18.4-19.6), compared to controls. Comorbid diagnoses of intellectual disability and developmental disorder explained most of the association between ADHD and disability pension, while lifetime educational attainment partially explained associations between ADHD and all occupational outcomes. Analyses of occupational trajectories found that income was lower and unemployment elevated relative to controls with the same educational attainment. Higher educational attainment correlated with higher income similarly among individuals with ADHD and controls after accounting for individual background factors. CONCLUSIONS: The occupational burden associated with ADHD is substantial. Comorbid developmental disorders, intellectual disability and educational difficulties (e.g., failing grades) from childhood to adulthood are important factors to consider when designing interventions to improve occupational outcomes in individuals with ADHD.

Disability, Hospital Care, and Cost: Utilization of Emergency and Inpatient Care by a Cohort of Children with Intellectual and Developmental Disabilities.

OBJECTIVE: To use medical claims data to determine patterns of healthcare utilization in children with intellectual and developmental disabilities, including frequency of service utilization, conditions that require hospital care, and costs. STUDY DESIGN: Medicaid administrative claims from 4 states (Iowa, Massachusetts, New York, and South Carolina) from years 2008-2013 were analyzed, including 108 789 children (75 417 male; 33 372 female) under age 18 years with intellectual and developmental disabilities. Diagnoses included cerebral palsy, autism, fetal alcohol syndrome, Down syndrome/trisomy/autosomal deletions, other genetic conditions, and intellectual disability. Utilization of emergency department (ED) and inpatient hospital services were analyzed for 2012. RESULTS: Children with intellectual and developmental disabilities used both inpatient and ED care at 1.8 times that of the general population. Epilepsy/convulsions was the most frequent reason for hospitalization at 20 times the relative risk of the general population. Other frequent diagnoses requiring hospitalization were mood disorders, pneumonia, paralysis, and asthma. Annual per capita expenses for hospitalization and ED care were 100% higher for children with intellectual and developmental disabilities, compared with the general population ($153 348 562 and $76 654 361, respectively). CONCLUSIONS: Children with intellectual and developmental disabilities utilize significantly more ED and inpatient care than other children, which results in higher annual costs. Recognizing chronic conditions that increase risk for hospital care can provide guidance for developing outpatient care strategies that anticipate common clinical problems in intellectual and developmental disabilities and ensure responsive management before hospital care is needed.

Brief Report: Classifying Rates of Students with Autism and Intellectual Disability in North Carolina: Roles of Race and Economic Disadvantage.

We examined special education classifications among students aged 3-21 in North Carolina public schools, highlighting autism spectrum disorder (ASD) and intellectual disability (ID). Results revealed variability by county in ASD and ID prevalence, and in county-level ratios of ID vs. ASD classifications. Sociodemographic characteristics predicted proportion of ASD or ID within a county; correlations showed an association between race and ID, but not ASD. County's median household income predicted proportion of students classified as ASD and ID (opposite directions), controlling for number of students and gender. Variability was unlikely related to biological incidence, and more likely related to district/school practices, or differences in resources. Disparities warrant further examination to ensure that North Carolina's youth with disabilities access necessary, appropriate resources.

Engaging Families in Employment: Individuals and Families' Retrospective Transition Experiences With Employment Services.

In the United States, employment experiences of people with intellectual and developmental disabilities (IDD) have been dominated by discrepancies between recent policy shifts promoting integrated employment for people with IDD and the stagnation of the employment rate in integrated settings for this population. Although there is no direct source for labor force participation for individuals with IDD in the general population, data from the National Core Indicators Project suggest that, in 2015-2016, only 19% of working-age adults supported by state IDD agencies worked in one of the three forms of integrated employment-group-supported, individual-supported, or competitive (individualized and without supports). Twelve percent (12%) worked in competitive or individual-supported employment, and 7% worked in group-supported employment (Hiersteiner, Bershadsky, Bonardi, & Butterworth, 2016). In addition, individual employment supports have not been implemented with fidelity to a consistent model or set of expectations, and participation in nonwork services has grown rapidly (Domin & Butterworth, 2013; Migliore et al., 2012; Winsor et al., 2017).

"It's Not Just About a Paycheck": Perspectives on Employment Preparation of Students With Intellectual Disability in Federally Funded Higher Education Programs.

Students with intellectual disability (ID) are increasingly attending postsecondary education institutions and acquiring work experiences while completing their studies. One of the main motivations for students with ID to seek higher education is to broaden and increase their chance for finding fulfilling, paid employment in their communities. Findings from a qualitative study on staff perspectives regarding career development and employment supports and services provided to students attending Transition and Postsecondary Education Programs for Students With Intellectual Disability (TPSID) model demonstration programs in the United States are presented. Results reflect consensus across program staff regarding the goals and expectations for employment of TPSID students. Programs vary considerably in their institutional context, their partnership with other entities, and the structure of employment services, as well as the emphasis placed on paid versus unpaid employment. Some of the key strategies shared by staff regarding successful student employment practices involved outreach and engagement, visibility on campus, improving access to career services, and cultivating partnerships. As higher education continues to expand its offerings to students with ID, postsecondary education programs need to continue to emphasize and honor the importance of paid employment, and continue to seek the best methods to achieve this outcome for students with ID.

Psychosocial and cultural needs of children with intellectual disability and their families among the Syrian refugee population in Turkey.

BACKGROUND: Turkey is the country hosting the largest number of refugees from Syria, with currently 3 571 175 million persons. The general health needs of the refugees are being addressed; however, people with intellectual disabilities (IDs), particularly children, are relatively missed. The aim of this study was to identify medical, psychological and social needs of children with ID and their families, among the Syrian refugee population in Turkey, and to define psychosocial and cultural needs for planning of future services. METHODS: One hundred forty-two children (67.6% men; mean age 90.5 months) diagnosed with intellectual disorders were included in the study. Family Needs Survey, with additional open-ended and close-ended questions, was used to evaluate family needs. Items from Developmental Disabilities Profile-2 were used to evaluate and screen cognitive, motor and language development as well as medical concerns and behavioural problems. Data on sociodemographic characteristics were also collected. RESULTS: The highest needs were identified in information and financial needs domains. Other indicated needs were on child care and community services domains. The least indicated items were on family and social support and explaining to others domains. An average of 63.5% of the respondents definitely agreed with the Family Needs Survey items. The overall level of identification of need items was higher than that in some previous studies, indicating the level of unmet needs of the studied population. Family income, parents' employment and parents' education were not significantly associated with unmet family needs. Special education services were unreachable for most of the families in the study. CONCLUSIONS: Families reported the highest needs in information and financial needs domains. The overall level of identification of needs was higher than that in some previous studies, indicating the level of unmet needs of the studied population. The majority of the parents reported that they had sufficient family and social support, which might be a protective factor for parental mental health. Parents' Turkish fluency was very significantly associated with every domain of unmet needs. Language barriers and translation problems had significant negative effects on families, as confirmed by the answers to open-ended questions. Another important factor identified was access to service professionals. Special education services, sorely needed for most of the families, could not always be reached. Although the progress of children who had received special education was not very encouraging, it was better than those who did not receive it. The first implication of the study is that increasing Turkish proficiency or providing high-quality and consistent translation services is vital for this category of children with ID. The second implication is that information and financial needs must be met with priority. Information must be tailored for each child's needs and developmental level. Special education and physical therapy must be more accessible and at higher quality.

Societal cost of childhood intellectual disability in Australia.

BACKGROUND: There is limited research quantifying the direct and indirect economic costs associated with intellectual disability (ID) in Australia. Costs incurred by families, governments and broader society include time spent providing care, absenteeism and increased healthcare utilisation. The purpose of this research is to quantify the costs associated with ID in childhood using a range of methods to collect cost data. METHODS: Costs included healthcare service utilisation, pharmaceutical use, caregiver productivity losses and time spent providing care because of the child's disability. The sample comprised caregivers with a child with ID aged between 2 and 10 years old recruited in Australia. Healthcare service utilisation and pharmaceutical use were obtained from routinely collected administrative claims data. Healthcare utilisation not captured in the routinely collected administrative data and absenteeism data were obtained from a retrospective recall-based questionnaire. Time spent providing care because of the child's disability was obtained using a time-use diary. RESULTS: The total cost of ID in Australia was estimated to be AUD 72 027 per year per child, and the total cost of ID in childhood was estimated to be AUD 12.5 billion per year. The cost to governments of ID in childhood was estimated to be AUD 6385 per child per year, resulting in a total cost to government of AUD 1.1 billion per year. CONCLUSIONS: This is the first study to estimate the direct and indirect costs associated with ID in childhood. The results of this research demonstrate the considerable economic impact of ID in childhood on families, governments and broader society in terms of both direct and indirect costs. An understanding of the cost implications of any intervention are critical in assisting policymakers in planning and prioritising of health services.

Identifying Predictors for Enhanced Outcomes for People With Intellectual and Developmental Disabilities.

People with intellectual and developmental disabilities (IDD) often rely on Medicaid-funded services and supports to facilitate their daily living. The financial investment for these services is significant, yet little work has been conducted to understand how these investments affect life outcomes. This pilot study used a novel data integration approach to offer initial insights about how Medicaid expenditures relate to outcomes using Medicaid claims data, results of the National Core Indicators consumer survey, and data from the Supports Intensity Scale (SIS). Findings suggested that subpopulations of people with IDD who also had high behavioral needs or high medical needs had significantly higher expenditures than individuals with more typical SIS-assessed support needs. Regression analyses suggested mixed outcomes based on the factors we considered, including a finding that people with IDD who lived in sponsored residential care homes were more likely to engage in inclusive activities in the community than those who lived in larger congregate settings, or those who lived in a family home. Results of this pilot, when brought to scale, will be useful in examining the performance of state IDD service systems over time.

Patient outcomes associated with tailored hospital programs for intellectual disabilities.

OBJECTIVES: Hospitals have begun designing programs tailored to patients with intellectual disabilities to address their specific healthcare needs and social determinants of health. This study aimed to determine whether these programs improve hospital outcomes for patients with intellectual disabilities. STUDY DESIGN: This cross-sectional, retrospective study analyzed data for patients with a primary or secondary diagnosis of intellectual disability and/or autism who were discharged from 5 hospitals participating in Vizient's Clinical Data Base/Resource Manager between January 2010 and September 2018. METHODS: Generalized linear regression models were constructed to test the association between tailored program status and length of stay, cost, and cost per day, and a binary logistic regression model was constructed to test the association between tailored program status and 30-day readmission. A secondary analysis stratified patients by 3M All Patient Refined Diagnosis Related Groups grouper (the standard for inpatient classification) admission severity of illness (ASOI) score. RESULTS: Of the 6618 patients included in the study, 29% were treated at hospitals with tailored programs. After controlling for patient demographic characteristics and clinical factors, patients treated at hospitals without programs had higher total costs (relative risk [RR], 1.06; P = .038) and cost per day (RR, 1.11; P <.001). Patients with an extreme ASOI score who were treated at hospitals without programs had significantly longer stays (RR, 1.38; P = .001), higher total cost (RR, 1.42; P <.001), and higher cost per day (RR, 1.10; P = .025) than patients treated at hospitals with programs. CONCLUSIONS: Providing tailored programs for patients with intellectual disabilities is a promising strategy for improving inpatient care for this population.

Impacts of genomics on the health and social costs of intellectual disability.

BACKGROUND: This study provides an integrated assessment of the economic and social impacts of genomic sequencing for the detection of monogenic disorders resulting in intellectual disability (ID). METHODS: Multiple knowledge bases were cross-referenced and analysed to compile a reference list of monogenic disorders associated with ID. Multiple literature searches were used to quantify the health and social costs for the care of people with ID. Health and social expenditures and the current cost of whole-exome sequencing and whole-genome sequencing were quantified in relation to the more common causes of ID and their impact on lifespan. RESULTS: On average, individuals with ID incur annual costs in terms of health costs, disability support, lost income and other social costs of US$172 000, accumulating to many millions of dollars over a lifetime. CONCLUSION: The diagnosis of monogenic disorders through genomic testing provides the opportunity to improve the diagnosis and management, and to reduce the costs of ID through informed reproductive decisions, reductions in unproductive diagnostic tests and increasingly targeted therapies.

Health Care Use and Spending of Pediatric Patients With an Intellectual or Developmental Disability.

BACKGROUND: Health care costs and utilization for those with an intellectual or developmental disability (IDD) have been shown to be higher than the general population. OBJECTIVE: To investigate the services that contribute to higher costs and utilization among noninstitutionalized children with an IDD. DESIGN: Matched case-control secondary analysis of the 2000-2017 Medical Expenditure Panel Survey. Pediatric (age 0-21) patients with an IDD were matched to non-IDD subjects. Health care utilization and costs were evaluated with zero-inflated negative binomial regressions and generalized linear models, respectively. MEASURES: Outcome measures included high-acuity health care utilization [ie, emergency department (ED) visits and hospital admissions], and cost outcomes for total spending, ED use, hospitalization, medications, office visits, home health, and physical therapy. RESULTS: There was no statistical difference in utilization of EDs among the 2 groups though subjects with an IDD showed more hospitalizations than their matched cohort (incidence rate ratios=1.63, P=0.00). Total health care spending was higher among patients with an IDD (coefficient=$5831, P=0.00). Pediatric spending was higher in all measures except for ED. The biggest discrepancies in spending were seen in home health (coefficient=$2558, P=0.00) and outpatient visits (coefficient=$1180, P=0.00). CONCLUSIONS: Pediatric patients with an IDD had higher health care spending and utilization than non-IDD subjects in all categories except for ED use.

Effect of deinstitutionalisation for adults with intellectual disabilities on costs: a systematic review.

OBJECTIVE: To review systematically the evidence on the costs and cost-effectiveness of deinstitutionalisation for adults with intellectual disabilities. DESIGN: Systematic review. POPULATION: Adults (aged 18 years and over) with intellectual disabilities. INTERVENTION: Deinstitutionalisation, that is, the move from institutional to community settings. PRIMARY AND SECONDARY OUTCOME MEASURES: Studies were eligible if evaluating within any cost-consequence framework (eg, cost-effectiveness analysis, cost-utility analysis) or resource use typically considered to fall within the societal viewpoint (eg, cost to payers, service-users, families and informal care costs). SEARCH: We searched MEDLINE, PsycINFO, CENTRAL, CINAHL, EconLit, Embase and Scopus to September 2017 and supplemented this with grey literature searches and handsearching of the references of the eligible studies. We assessed study quality using the Critical Appraisals Skills Programme suite of tools, excluding those judged to be of poor methodological quality. RESULTS: Two studies were included; both were cohort studies from the payer perspective of people leaving long-stay National Health Service hospitals in the UK between 1984 and 1992. One study found that deinstitutionalisation reduced costs, one study found an increase in costs. CONCLUSION: A wide-ranging literature review found limited evidence on costs associated with deinstitutionalisation for people with intellectual disabilities. From two studies included in the review, the results were conflicting. Significant gaps in the evidence base were observable, particularly with respect to priority populations in contemporary policy: older people with intellectual disabilities and serious medical illness, and younger people with very complex needs and challenging behaviours. PROSPERO REGISTRATION NUMBER: CRD42018077406.

Access to health care for older people with intellectual disability: a modelling study to explore the cost-effectiveness of health checks.

BACKGROUND: Whilst people with intellectual disability grow older, evidence has emerged internationally about the largely unmet health needs of this specific ageing population. Health checks have been implemented in some countries to address those health inequalities. Evaluations have focused on measuring process outcomes due to challenges measuring quality of life outcomes. In addition, the cost-effectiveness is currently unknown. As part of a national guideline for this population we sought to explore the likely cost-effectiveness of annual health checks in England. METHODS: Decision-analytical Markov modelling was used to estimate the cost-effectiveness of a strategy, in which health checks were provided for older people with intellectual disability, when compared with standard care. The approach we took was explorative. Individual models were developed for a selected range of health conditions, which had an expected high economic impact and for which sufficient evidence was available for the modelling. In each of the models, hypothetical cohorts were followed from 40 yrs. of age until death. The outcome measure was cost per quality-adjusted life-year (QALY) gained. Incremental cost-effectiveness ratios (ICER) were calculated. Costs were assessed from a health provider perspective and expressed in 2016 GBP. Costs and QALYs were discounted at 3.5%. We carried out probabilistic sensitivity analysis. Data from published studies as well as expert opinion informed parameters. RESULTS: Health checks led to a mean QALY gain of 0.074 (95% CI 0.072 to 0.119); and mean incremental costs of £4787 (CI 95% 4773 to 5017). For a threshold of £30,000 per QALY, health checks were not cost-effective (mean ICER £85,632; 95% CI 82,762 to 131,944). Costs of intervention needed to reduce from £258 to under £100 per year in order for health checks to be cost-effective. CONCLUSION: Whilst findings need to be considered with caution as the model was exploratory in that it was based on assumptions to overcome evidence gaps, they suggest that the way health systems deliver care for vulnerable populations might need to be re-examined. The work was carried out as part of a national guideline and informed recommendations about system changes to achieve more equal health care provisions.

Emergency department utilization and monetary charges in adolescents with autism spectrum disorder, intellectual disability, and a population comparison group.

Adolescents with autism spectrum disorder (ASD) and/or intellectual disability (ID) may utilize the emergency department (ED) more frequently than individuals in the general population. This study compared ED utilization and charges during adolescence among four groups of individuals: ASD-only, ASD + ID, ID-only, and a population comparison (PC) group. ED visits occurring during age 12-17 years were examined to identify non, low, and high utilizers. Logistic regression was used to compare groups on the odds of having at least one ED visit during adolescence. Generalized linear models were used to compare groups on number of ED visits and total charges, stratified by low and high ED utilization. Descriptive examination of presenting diagnoses was performed. Individuals with ID, with or without co-occurring ASD, were significantly more likely to have at least one ED visit during adolescence. Among high ED utilizers, the ID-only group had the most frequent ED visits but had significantly lower charges than the ASD-only group. Individuals with ASD-only and ASD + ID differed from the ID-only and PC groups in presenting diagnoses. No differences between groups in number of ED visits or charges were observed among low utilizers. ID, with or without ASD, increased the odds of visiting the ED during adolescence. Adolescents with ID-only had the most frequent ED visits, but individuals with ASD-only had the highest ED charges and tended to be seen for psychiatric concerns. Further research is warranted to better characterize and meet the healthcare needs of individuals with ASD and/or ID during adolescence. Autism Res 2019, 12: 1129-1138. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: Frequent emergency department (ED) visits strain medical resources and are costlier than primary and urgent care. Our findings show that adolescents with intellectual disability (ID) may use the ED frequently for nonurgent conditions. Adolescents with autism spectrum disorder, without ID, use the ED less frequently but incur higher charges. Further research is needed to understand how to meet the unique needs of these populations in primary care to prevent overuse of the ED.

Trends and variations in per capita expenditure on adult intellectual disabilities health and social care across Scotland, and by urban/rural class.

BACKGROUND: Following the global financial crisis in 2007/08, the UK implemented an austerity programme which may impact on services. Scotland comprises both densely populated urban conurbations and highly dispersed remote rural and island communities. METHOD: Expenditure data were extracted from Scottish Government statistics. Per capita expenditure was calculated using adjusted Scotland's 2011 census data. RESULTS: There was a 3.41% decrease in real term expenditure on adult intellectual disabilities services between 2012/13 and 2014/15 (>£32 million). In 2014/15, per capita expenditure on adult intellectual disabilities health care ranged from £1,211 to £17,595; social care from £21,147 to £83,831; and combined health and social care expenditures from £37,703 to £85,929. Per capita expenditure on combined health and social care was greater in rural areas, with more on intellectual disabilities social care, though less on health care. CONCLUSIONS: Scottish expenditure on adult intellectual disabilities services has not kept abreast of rising living costs. It varies considerably across the country: a postcode lottery.

High health care costs among adults with intellectual and developmental disabilities: a population-based study.

OBJECTIVE: While it is generally accepted that adults with intellectual and developmental disabilities (IDDs) use health services to a greater extent than the general population, there is remarkably little research that focuses on the costs associated with their health care. Using population-based data from adults with IDD in Ontario, this study aimed to estimate overall health care costs, classify individuals into high and non-high cost categories and describe differences in the demographics, clinical profiles and health care use patterns between these groups. DESIGN: A retrospective cohort study based in Ontario, Canada, was conducted with the use of linked administrative health data. METHODS: A costing algorithm developed for the general population in Ontario was applied to estimate health care costs of adults with IDD under age 65 for 2009 and 2010. Individuals were categorised into two groups according to whether their total annual health care costs were among the highest decile in the general population. These groups were compared on demographic and clinical variables, and relative mean costs for six types of health care services in the two groups were computed. In addition, we computed the proportion of individuals who remained in the high cost group over 2 years. RESULTS: Among adults with IDD, 36% had annual health care expenditures greater than $2610 CAD (top decile of all Ontario adults under 65). These individuals were more likely to be female, to be in the oldest age groups, to live in group homes and to be receiving disability income support than individuals whose expenditures were below the high cost threshold. In addition, they had higher rates of all the physical and mental health conditions studied. Greatest health care expenses were due to hospitalisations, especially psychiatric hospitalisations, continuing care/rehabilitation costs and medication costs. The majority of individuals whose health care costs placed them in the high cost category in 2009 remained in that category a year later. DISCUSSION: Adults with IDD are nearly 4 times as likely to incur high annual health care costs than those without IDD. Individuals with IDD and high health care costs have unique health and demographic profiles compared with adults with IDD whose annual health care costs are below the high cost threshold. Attending to their health care needs earlier in their health care trajectory may be an opportunity to improve health and reduce overall health care costs. It is important that we explore how to best meet their needs. Models proposed to meet the needs of adults with high health care costs in the general population may not apply to this unique group.