The association between the Patient Protection and Affordable Care Act and healthcare affordability among US adults with intellectual disability.

BACKGROUND: Historically, US adults with intellectual disability (ID) experience worse healthcare access than the general population. However, the implementation of the Patient Protection and Affordable Care Act (ACA) may have reduced disparities in healthcare access. METHODS: Using a pre-ACA 2011-2013 sample and a post-ACA implementation 2014-2016 sample from the National Health Interview Survey data, we examined the association between the ACA's introduction and healthcare access among adults with ID (N = 623). Negative binomial regression models were used to test the association between the ACA and the total number of foregone healthcare services. Binary logistic regression was used to explore whether the ACA's implementation was associated with the increased likelihood of possessing health insurance as well as the decreased likelihood of any and particular measures of foregone healthcare services due to cost. RESULTS: The study provides evidence that the ACA's implementation was associated with the decreased likelihood of the total number and any foregone care services owing to cost. Findings also revealed that the ACA's implementation was associated with expansion of health insurance coverage and decreasing instances of foregone care services for medical care, dental care, specialist visit and mental care among adults with ID. However, persons with ID were still at a higher risk of foregone prescription medicines, follow-up medical care and eyeglasses due to cost in the post-ACA years. CONCLUSIONS: The study provides evidence that healthcare access among Americans with ID improved after the ACA's implementation. However, challenges in access to follow-up care, eyeglasses and prescription medicines persist and require policy solutions, which extend beyond the ACA's provisions.

Factors associated with the reporting of Down syndrome as the underlying cause of death on US death certificates.

BACKGROUND: Efforts aimed at preventing premature mortality for people with Down syndrome are hindered by the practice of reporting disability as the underlying cause of death. Prior research suggests this form of diagnostic overshadowing may be the result of increased uncertainty surrounding the death. METHODS: This study uses bivariable analysis and multivariable logistic regression models to investigate associations between sociodemographic characteristics, comorbidities, and death context and processing characteristics with the reporting of Down syndrome as the underlying cause of death in 2005-2017 US Multiple Cause of Death data files. RESULTS: The reporting of Down syndrome as the underlying cause of death was associated with characteristics indicative of an increased amount of uncertainty surrounding the death. Results also suggest other mechanisms may inform inaccurate reporting, such as racial bias, and the continued conflation of disability and health. CONCLUSIONS: Medical personnel certifying death certificates should strive for accuracy when reporting the causes of death. To ensure this outcome, even in the midst of increased uncertainty, Down syndrome should not be reported as the underlying cause of death unless the decedent was diagnosed with Alzheimer's disease or unspecified dementia. Future research should further explore the possibility that increased death certification errors for adults with Down syndrome, or other developmental disabilities, are associated with racial bias.

Racial-ethnic differences in educational trajectories for individuals with intellectual disability.

BACKGROUND: Racial-ethnic differences in educational attainment have not been explored among adults with intellectual disability (ID). Because adults with ID and racial-ethnic minority groups have been historically marginalised from educational pathways through life, they have likely experienced cumulative disadvantage. Therefore, investigating the intersection of ID and race-ethnicity is necessary to increase understanding of educational attainment among adults with ID. METHODS: Using 1986-2017 National Health Interview Survey data, we examined the educational trajectories of adults with ID, stratified by race-ethnicity (N = 4610). Generalised ordered logistic regression models were utilised to estimate the effect of birth cohort on educational attainment by race-ethnicity among adults with ID. RESULTS: Results support prior findings that educational attainment increased for adults with ID around the 1950-1959 birth cohort; however, this was only the case for non-Hispanic Whites. For racial-ethnic minority groups, the probability of attaining a high school degree did not increase until comparatively later birth cohorts: non-Hispanic Black adults did not have their largest gains in educational attainment until the 1960-1969 birth cohort; Hispanic adults did not have their largest gains in attainment until the 1980-1999 birth cohort. CONCLUSION: This study provides evidence of improvements in educational attainment for all adults with ID across birth cohorts. However, racial-ethnic disparities were also present - educational attainment levels for non-Hispanic Blacks remained lower than for non-Hispanic Whites across all birth cohorts in the study. Hispanics were able to catch up to and surpass both non-Hispanic Whites and non-Hispanic Blacks by the end of the study period, despite lower levels of education in the early birth cohorts. Results from this study highlight the need to attend to race-ethnicity when examining educational outcomes among adults with ID.

Cause of death in adults with intellectual disability in the United States.

BACKGROUND: Prior studies report that adults with intellectual disability (ID) have cause of death patterns distinct from adults in the general population but do not provide comparative analysis by specific causes of death. METHODS: Data are from the National Vital Statistics System 2005-2017 US Multiple Cause-of-Death Mortality files. We utilised adjusted odds ratios to identify causes of death that were more common for adults whose death certificate indicated ID (N = 22 512) than for adults whose death certificate did not indicate ID (N = 32 738 229), controlling for severity level of ID. We then examine the associations between biological sex and race-ethnicity and causes of death solely among adults with ID. RESULTS: The leading cause of death for adults with and without ID indicated on their death certificate was heart disease. Adults with ID, regardless of the severity of the disability, had substantially higher risk of death from pneumonitis, influenza/pneumonia and choking. Adults with mild/moderate ID also had higher risk of death from diabetes mellitus. Differences in cause of death trends were associated with biological sex and race-ethnicity. CONCLUSIONS: Efforts to reduce premature mortality for adults with ID should attend to risk factors for causes of death typical in the general population such as heart disease and cancer, but also should be cognisant of increased risk of death from choking among all adults with ID, and diabetes among adults with mild/moderate ID. Further research is needed to better understand the factors determining comparatively lower rates of death from neoplasms and demographic differences in causes of death among adults with ID.

Heterogeneity in age at death for adults with developmental disability.

BACKGROUND: Although increased attention has been devoted to mortality trends for adults with developmental disability, research has not accounted for possible differences in age at death between disability types. We examine whether heterogeneity is present in age at death between adults with different types of developmental disability. METHODS: Data were from the 2012-2016 U.S. Multiple Cause-of-Death Mortality files. Mean age at death and age at death distributions were analysed for adults, aged 18-126, with and without developmental disability collectively and then stratified by biological sex. RESULTS: There were 33 154 decedents with and 13 026 759 without developmental disability. Compared with adults without developmental disability, age at death was lower for all decedents with developmental disability but varied markedly by disability type and biological sex. Among adults with developmental disability, those with intellectual disability had the highest age at death, and those with cerebral palsy or other rare developmental disabilities, especially if co-morbid for a second developmental disability, had the lowest age at death. CONCLUSION: Research on age at death for adults with developmental disability must account for heterogeneity among disability types in order to ensure reliable estimates. Failure to do so conceals important differences between disability types, which can misguide public health and preventive care efforts to reduce premature mortality and/or provide aging-related supports.

Death by mental retardation? The influence of ambiguity on death certificate coding error for adults with intellectual disability.

BACKGROUND: Although the coding of mental retardation as underlying cause of death has been recognised by previous researchers as erroneous, factors influencing this inaccuracy have not been sufficiently analysed. This study explores the effects of diagnostic ambiguity on risk of mental retardation being coded as underlying cause of death on US death certificates from 2004. METHODS: Utilising all US death certificates from 2004 that included a cause of death code for mental retardation, logistic regression analysis provided estimates of the likelihood of having mental retardation erroneously coded as the underlying cause of death. Estimators used to measure ambiguity included the number of multiple causes of death, the place of death, and ICD-10 diagnostic Chapter codes. RESULTS: A total of 2278 US death certificates from 2004 included a cause of death code for mental retardation. Of these death certificates, 20% erroneously coded mental retardation as the underlying cause of death. Reflecting the negative impact of diagnostic ambiguity on death certificate coding accuracy, mental retardation was more likely to be coded as underlying cause of death for decedents who: (1) had a death certificate that provided less information on co-morbid disease processes; (2) died in an outpatient or emergency room setting; or (3) had either abnormal symptomatology or death by injury, accident or other external cause. CONCLUSIONS: Findings from this study, as well as prior research, demonstrate that attempts to understand mortality trends for this population must attend to frequent underlying cause of death coding errors which threaten accuracy of cause of death data. Furthermore, inquiry is warranted into the impetus behind US death certificate coding policy that continues to allow the erroneous coding of 'death by mental retardation'.