Prevalence of intellectual disability among adults born in the 1980s and 1990s in the United States.

BACKGROUND: Prevalence of intellectual disability (ID) is currently estimated through parent report on surveys of children. It is difficult to estimate the number of adults living with ID in the United States because no comprehensive survey or surveillance allows for identification. The purpose of this study was to estimate the prevalence and number of adults with ID born between 1980 and 1999 using multiple years of the National Health Interview Survey (NHIS) and Census data. METHODS: We concatenated the NHIS from 1997-2016 that evaluated parental response about whether a child aged 3-17 years had an ID. Using weighted survey analyses, we estimated the prevalence of ID among individuals across four birth cohorts-(1) 1980-1984, (2) 1985-1989, (3) 1990-1994, and (4) 1995-1999. The number of adults with ID was then extrapolated by applying these prevalence rates to Census population estimates (as of 1 July 2021) of respective birth cohorts. RESULTS: Weighted prevalence of ID varied by birth cohort, sex, race and ethnicity, and US Census Bureau regions. The overall prevalence rate was 1.066 [95% confidence interval (CI): 0.831-1.302] for adults born between 1980 and 1984, 0.772 (CI: 0.654-0.891) for adults born between 1985 and 1989, 0.774 (0.675-0.874) for adults born between 1990 and 1994, and 1.069 (CI: 0.898-1.240) for adults born between 1995 and 1999. Overall, we estimate that 818 564 adults with ID who were approximately 21-41 years were living in the United States as of 2021. CONCLUSIONS: This study provides researchers examining adult health outcomes with an estimated denominator of young and middle-aged adults living with ID in the United States. Policymakers can use this information to support justification for resource and service needs, and clinicians may benefit from understanding that ID is a lifelong developmental condition often with additional physical, emotional and developmental needs requiring tailored care.

Human immunodeficiency virus diagnosis and care among adults with intellectual and developmental disabilities who are publicly insured.

BACKGROUND: This study aimed to assess the prevalence of human immunodeficiency virus (HIV) testing, HIV diagnosis and receipt of HIV care among adults with intellectual and developmental disabilities (IDDs) who are publicly insured in the USA. DESIGN: This study is a cross-sectional analysis of Medicare-Medicaid linked data of adults with IDD who were publicly insured in 2012 (n = 878 186). METHODS: We estimated adjusted prevalence ratios of HIV testing, diagnosis and receipt of antiretroviral therapy (ART). We also identified the relationship between predisposing (age, gender, race and ethnicity), enabling (Medicare, Medicaid or both; rural status; geographical location; and county income) and need-related characteristics (IDD diagnosis and other co-occurring conditions) associated with these outcomes. RESULTS: Only 0.12% of adults with IDD who had no known HIV diagnosis had received an HIV test in the past year. The prevalence of HIV diagnosis among adults with IDD was 0.38%, although differences by type of IDD diagnosis were observed. Prevalence of HIV diagnosis differed by type of IDD. Among adults with IDD who were living with HIV, approximately 71% had received ART during 2012. The adjusted analyses indicate significant racial disparities, with Black adults with IDD making up the majority (59.11%) of the HIV-positive IDD adult population. CONCLUSIONS: Adults with IDD are a unique priority population at risk for HIV-related disparities, and the level of risk is differential among subtypes of IDD. People with IDD, like other people with disabilities, should be considered in prevention programming and treatment guidelines to address disparities across the HIV care continuum.