Perceptions of the rights and capabilities of people with intellectual disability in the United States.

BACKGROUND: The United States has yet to ratify the UN Convention on the Rights of Persons with Disabilities. The extent of public support in the United States for the rights of persons with intellectual disability is not known. METHODS: Online public opinion polls were conducted nationally and in eight selected cities in 2017 and repeated in 2018 with 26,876 respondents in total. RESULTS: Support for rights was high: notably in accessing healthcare, schooling, playing sports and getting married. However, less support was evident for the rights of people who were perceived as less capable. Respondents with prior frequent personal contact and who had an engagement with Special Olympics were those most likely to support the rights and capabilities of persons with intellectual disability. CONCLUSIONS: Public support for the ratification of the UN Convention seems likely. Further longitudinal research could identify successful strategies for implementing the rights of disabled persons locally and nationally.

Prevalence of Cerebral Palsy among 8-Year-Old Children in 2010 and Preliminary Evidence of Trends in Its Relationship to Low Birthweight.

BACKGROUND: The public health objective for cerebral palsy (CP) in the United States is to reduce the percentage of children with CP who were born low birthweight (LBW, <2500 g) by 10% between 2006 and 2020. This study reports the prevalence of CP in a constant surveillance area for the years 2006, 2008, and 2010 and describes initial progress towards the CP public health objective. METHODS: Data on children with CP at age 8 years were ascertained by the Autism and Developmental Disabilities Monitoring (ADDM) Network, a population-based surveillance system that monitored CP in four areas of the United States. RESULTS: CP prevalence in 2010 was 2.9 per 1000 [95% confidence interval (CI) 2.6, 3.2], down from 3.5 (95% CI 3.2, 3.9) in the same surveillance area in 2006. Among CP cases with no documented postneonatal aetiology, 49.1% (95% CI 42.9, 55.2) were born LBW in 2010 compared with 54.3% (95% CI 48.4, 60.1) in 2006. In 2010, 28.1% (95% CI 22.9, 30.4) were born very low birthweight (VLBW, <1500 g) compared with 35.4% (95% CI 30.0, 41.2) in 2006. The relative risks for associations between CP and both LBW and VLBW also declined, though not significantly, during the study period. CONCLUSIONS: Declines in the associations between CP and LBW categories may have contributed to declines during the study period in both the prevalence of CP and the percentage of children with CP who were born LBW or VLBW. Ongoing monitoring of these trends is warranted.

An observational investigation of unemployment, underemployment, and competitive integrated employment of people with intellectual and developmental disabilities in 2021-2022.

BACKGROUND: Employment is an important component of community living, and a precursor to economic stability and independence. Despite this, research consistently demonstrates people with intellectual and developmental disabilities (IDD) have low rates of community-based employment. However, little research has been conducted to quantify competitive integrated employment, and which individuals have better employment outcomes as it relates to competitive integrated employment. OBJECTIVE: This study aims to explore the ways in which key service-related and demographic characteristics of individuals with IDD are associated with participation in competitive integrated employment. METHODS: We used the 2021-2022 National Core Indicators Intellectual and Developmental Disabilities In-Person Survey dataset. We conducted bivariate and multivariate analyses, using chi-square and generalized linear models, to examine the cross-sectional relationship between employment and demographic and service-related characteristics for 4629 individuals with IDD. RESULTS: Overall, 42% of the sample was unemployed but wanted a job, while 39% were underemployed and just 21% have competitive integrated employment. Several demographic and service-related characteristics were significantly associated with employment. After controlling for demographic and service-related correlates of employment, having an employment-related goal in one's service plan was associated with 4.5 (95% CI: 3.6-5.5) times higher odds of competitive integrated employment relative to unemployment. CONCLUSIONS: This study underscores the value of person-centered planning for improved employment outcomes. Further research is needed to fully understand potential inequities in employment and system-level factors that are associated with competitive, integrated employment, as well as solutions to improve access to customized individual employment supports for all people with IDD.

Service-Delivery Competencies in Home and Community-Based Services Needed to Achieve Person-Centered Planning and Practices: A Systematic Review.

Home and community-based services (HCBS) assist people with disabilities and older adults to remain in their homes. Direct support professionals and care managers who facilitate the development of support plans need to employ person-centered approaches to ensure services are tailored to peoples' needs and preferences. The aims were to identify the key competencies needed for delivery of person-centered supports and examine the relationship between HCBS and its' outcomes in the United States. We used the competencies developed by the National Center on advancing Person-Centered Practices and Systems as a framework. We conducted a systematic review to identify the skills necessary to deliver person-centered HCBS. We coded 43 articles and identified seven competencies. Most frequently mentioned competencies related to culturally informed practice, cultivating connections, and promoting rights, choice, and control. Policy makers should create training standards for person-centered practices to ensure that people receiving HCBS live the lives they want.

Public attitudes to the rights and community inclusion of people with intellectual disabilities: A transnational study.

BACKGROUND: Public support for the rights of persons with intellectual disability (ID) and their acceptance in local communities has been rarely studied internationally and the variables associated with more positive attitudes remain to be confirmed. AIMS: To develop and test a model that brought together personal, organisational and national predictors related to public attitudes that have been previously identified in past research. METHODS AND PROCEDURES: Self-completed, online surveys were undertaken with market research panels in 17 countries and in eight cities in the USA with a total of 36,508 respondents who were representative in terms of gender and age. Path analysis was used to explore the inter-relationships among the predictor, possible mediating and outcomes variables. OUTCOMES AND RESULTS: The resulting model was a good fit for the data. Support for the rights and community acceptance of people with ID was highest among university educated respondents, those who were comfortable at meeting people with ID and those living in countries with very high ratings on the Inequality Adjusted Human Development Index. CONCLUSIONS AND IMPLICATIONS: The model could guide further research into public attitudes alongside the development of interventions to promote more positive attitudes. Further research into the validity of the model is proposed.

Hypertension in Adults With Intellectual Disability: Prevalence and Risk Factors.

INTRODUCTION: Individuals with intellectual disability have a high prevalence of obesity and low physical activity levels, which are risk factors for hypertension. This study estimated the prevalence of hypertension in a global data set of adults with intellectual disability participating in Special Olympics and investigated the role of physical activity and obesity in hypertension risk. METHODS: A total of 33,122 individuals aged ≥18 years with intellectual disability who participated in Special Olympic events from 2014 to 2018 had their brachial blood pressure, BMI, and self-reported physical activity assessed. Hypertension was classified using 2017 American College of Cardiology/American Heart Association guidelines (systolic blood pressure≥130 mmHg and diastolic blood pressure≥80 mmHg). Data were analyzed in 2019. RESULTS: Participants were aged 31 (SD=11) years, 64% male, and had a resting blood pressure of 121 (SD=16)/76 (SD=12) mmHg. The population was 48% (95% CI=47.5%, 48.6%) hypertensive. Male participants had a higher prevalence of hypertension (50.7%, 95% CI=50.1%, 51.4%) than female participants (43.1%, 95% CI=42.2%, 44.0%), with prevalence increasing with age. Odds of hypertension increased when performing no or insufficient physical activity and with increasing obesity (p<0.01), tripling (OR=3.06, 3.66) for all individuals who performed no physical activity except for those of normal weight (OR=1.72), and doubling (OR=2.13-3.87) for individuals who were obese or morbidly obese across all physical activity levels. CONCLUSIONS: This study is the first to determine population-based prevalence rates of hypertension in individuals with intellectual disability. It highlights the similarity in prevalence to the general population. The results emphasize the importance of population-wide screening, increasing physical activity, and reducing obesity in decreasing cardiovascular risk in this population.

Evaluating the potential of Special Olympics fitness models as a health intervention for adults with intellectual disabilities.

BACKGROUND: People with intellectual disabilities (ID) have high prevalence of cardiovascular disease (CVD) risk factors; yet, few behavioral health interventions are designed and implemented for people with ID. OBJECTIVE: This study examined Special Olympics Inc. (SOI) fitness models as a potential intervention to reduce CVD risk in people with ID. METHODS: Data from SOI fitness models implemented in 2016-2018 were assessed. Special Olympics Programs received funding, resources, and technical assistance from SOI to conduct fitness models centered on inclusive physical activity and goal setting. Weight, body mass index, systolic blood pressure (SBP), and diastolic blood pressure (DBP) were measured at baseline and 4-12 weeks into the model. Multi-level multivariable quintile linear regression assessed change. RESULTS: 383 participants with ID (athletes) and 281 partners without ID met inclusion criteria. Mean weight loss among athletes was 0.67 kg and 132 (31.9%) lost ≥ 1 kg. Blood pressure decreased in SBP quintile 4 (-7.52 mm Hg, 95% confidence interval [CI]: 11.8, -4.0), SBP quintile 5 (-9.52 mm Hg, 95% CI: 13.5, -5.6), and DBP quintile 5 (-7.49 mm Hg, 95% CI: 13.1, -1.9). Partners had similar results. Strongest effects were in a 'high-risk' group that was in the quintile 4 or 5 in all baseline measures. CONCLUSION: In fitness models developed to improve fitness for people with ID, there was a reduction in weight and blood pressure. SOI fitness models show promise and potential as a health intervention. This work enables further examination of indicators for successful implementation and evaluation of health.

Positive and negative social exchanges experienced by fathers and mothers of children with autism.

When faced with child-related challenges associated with autism spectrum disorder, positive and negative social exchanges may be critical to parents' psychological well-being. This study examined the types and sources of positive and negative social exchanges reported by mothers and fathers of children with autism spectrum disorder and their association with parental depressive symptoms in 176 families of children (5-12 years; 85% male) with autism spectrum disorder. One-way repeated measure multivariate analyses of variance and multilevel modeling were used. Results indicated that informational was the most frequent type, and one's spouse was the primary source, of both positive and negative social exchanges. Fathers reported fewer positive, and also fewer negative, social exchanges with family, friends, and health professionals than mothers. Positive and negative social exchanges with one's spouse were most strongly associated with depressive symptoms. Findings have implications for interventions designed to foster optimal outcomes in families of children with autism spectrum disorder.

Ten Sites, 10 Years, 10 Lessons: Scale-up of Routine HIV Testing at Community Health Centers in the Bronx, New York.

OBJECTIVE: In response to the current CDC recommendations for routine HIV testing in clinical settings, the Adolescent AIDS Program at Montefiore Medical Center in the Bronx, New York, developed the Advise, Consent, Test, Support routine HIV testing model (ACTS) in 2003. ACTS was piloted in 10 community health centers operated by Montefiore because they serve populations most at risk for HIV/AIDS. METHODS: ACTS streamlined and codified the counseling and testing process, provided a routine HIV testing practice change plan, and provided training and communication materials that promoted routine HIV testing. To determine program success, we measured the number of patients seen at the clinics, the number of HIV test-eligible patients (those aged 13-64 years and not pregnant), the number and percent of patients receiving HIV testing, HIV test results, and the number of patients linked to care. RESULTS: HIV testing in the 10 sites increased nearly threefold during the pilot period (2003-2007), from 3,944 of 49,125 eligible patients (8%) tested in 2003 to 11,212 of 55,629 eligible patients (20%) tested in 2007. With little ongoing support, the sites continued or maintained improvements: 13,226 of 56,686 eligible patients (23%) were tested in 2008, 15,965 of 57,025 eligible patients (28%) were tested in 2011, 17,483 of 60,514 eligible patients (29%) were tested in 2012, and 17,971 of 63,172 eligible patients (28%) were tested in 2013. Sites identified 433 HIV-positive patients from 2006 to 2013 (0.2%-0.6% annual seropositivity), and 96% of them were linked to care within 90 days of HIV diagnoses (range: 92% to 98% annually). CONCLUSION: ACTS demonstrated that substantial and sustained increases in routine HIV testing can be achieved in health-care settings, not by adding personnel or financial resources, but by using the model's practice change plan and streamlined HIV testing approach.

Inter-Pregnancy Intervals and the Risk of Autism Spectrum Disorder: Results of a Population-Based Study.

Recent studies have reported an increased risk of autism among second-born children conceived <12 versus >36 months after the birth of a sibling. Confirmation of this finding would point to inter-pregnancy interval (IPI) as a potentially modifiable risk factor for autism. This study evaluated the relationship between IPI and autism spectrum disorder (ASD) risk in a Wisconsin birth cohort of 31,467 second-born children, of whom 160 resided in the study area and were found to have ASD at age 8 years. In adjusted analyses, both short (<12) and long (>84 month) IPIs were associated with a two-fold risk of ASD relative to IPIs of 24-47 months (p < 0.05). The long IPI association was partially confounded by history of previous pregnancy loss.

Factors associated with interhospital transfer of children with respiratory failure from level II to level I pediatric intensive care units.

PURPOSE: Of all sources of admission to level I pediatric intensive care units (PICUs), interhospital transfer admissions from level II PICUs carry the highest mortality and resource use burden. We sought to investigate factors associated with transfer of children with respiratory failure from level II to level I PICUs. METHODS: A case-control study was conducted among children with respiratory failure admitted to 6 level II PICUs between January 1, 1997, and December 31, 2007, with frequency matching of 466 nontransferred children (controls) to 187 transferred children (cases). RESULTS: Among 653 children, transferred children were younger and had more comorbidities. After multivariable analysis, transferred children were more likely to have comorbidities (odds ratio [OR], 2.02; 95% confidence interval [CI], 1.36-2.98) and receive escalated care including high-frequency ventilation (OR, 2.57; 95% CI, 1.04-6.37) and surfactant therapy (OR, 5.33; 95% CI, 1.35-21.0). CONCLUSIONS: The study identified patient-level and process-of-care factors associated with transfer from level II to level I PICUs. These findings highlight the influence of escalated care on transfer decision making for critically ill children in respiratory failure.