The public health response to the COVID-19 pandemic for people with disabilities.

With the rapidly changing landscape of the COVID-19 outbreak, how to best address the needs and continue to protect the health and well-being of people with disabilities (PwDs) is a global public health priority. In this commentary we identify three public health areas of ongoing need and offer possible strategies to address each. These areas include: the types of data that would help clarify risks for PwDs and help assure their safety long term; the prevention, treatment and mitigation measures for PwDs that are needed through the duration of the outbreak; and the issues of equity in access to and quality of medical care for PwDs. Because of the rapid nature of the public health response, it is critical to reassess and readjust our approach to best address the needs of PwDs in the months and years to come and to incorporate these new practices into future emergency preparedness responses.

Considering disability and health: Reflections on the Healthy People 2020 Midcourse Review.

The Healthy People 2020 (HP2020) Midcourse Review (MCR) presents an opportunity for professionals in the disability and health field to contemplate preliminary progress toward achieving specific health objectives. The MCR showed notable progress in access to primary care, appropriate services for complex conditions associated with disability, expansion of health promotion programs focusing on disability, improving mental health, and reducing the unemployment rate among job seekers with disabilities. This commentary presents potential considerations, at least in part, for such progress including increased access to health care, greater awareness of appropriate services for complex conditions, and opportunities for societal participation. Additional considerations are provided to address the lack of progress in employment among this population -- a somewhat different measure than that for unemployment. Continuing to monitor these objectives will help inform programs, policies, and practices that promote the health of people with disabilities as measured by HP2020.

A Review of Global Literature on Using Administrative Data to Estimate Prevalence of Intellectual and Developmental Disabilities.

As understanding of health deficits among people with intellectual and developmental disabilities (IDD) increases, concerns grow about how to develop comprehensive, sustainable surveillance systems to reliably monitor the health of this population over time. This study reviews literature from 12 countries in which retrospective administrative data have been used to estimate population-based prevalence of IDD, identifies promising practices in that literature, and discusses the feasibility of applying those promising practices to other countries. Administrative data sources can be used to identify the number of people with IDD (numerators) in the presence of population estimates from which people with IDD are drawn (denominators) for discrete geographic locations. Case ascertainment methods, age groupings, data years captured, and other methods vary, contributing to a wide variation in prevalence rates. Six methods are identified from five countries that appear to offer the greatest likelihood of expanded applications. Approaches in which administrative data collections are linked with other population-based data sources appear promising as a means of estimating the size and characteristics of populations living with IDD in defined geographic locations. They offer the potential for sustainability, timeliness, accuracy, and efficiency.

Contraceptive use at last intercourse among reproductive-aged women with disabilities: an analysis of population-based data from seven states.

OBJECTIVE: To assess patterns of contraceptive use at last intercourse among women with physical or cognitive disabilities compared to women without disabilities. STUDY DESIGN: We analyzed responses to 12 reproductive health questions added by seven states to their 2013 Behavioral Risk Factor Surveillance System questionnaire. Using responses from female respondents 18-50 years of age, we performed multinomial regression to calculate estimates of contraceptive use among women at risk for unintended pregnancy by disability status and type, adjusted for age, race/ethnicity, marital status, education, health insurance status, and parity. RESULTS: Women with disabilities had similar rates of sexual activity as women without disabilities (90.0% vs. 90.6%, p=.76). Of 5995 reproductive-aged women at risk for unintended pregnancy, 1025 (17.1%) reported one or more disabilities. Contraceptive use at last intercourse was reported by 744 (70.1%) of women with disabilities compared with 3805 (74.3%) of those without disabilities (p=.22). Among women using contraception, women with disabilities used male or female permanent contraception more often than women without disabilities (333 [29.6%] versus 1337 [23.1%], p<.05). Moderately effective contraceptive (injection, oral contraceptive, patch, or ring) use occurred less frequently among women with cognitive (13.1%, n=89) or independent living (13.9%, n=40) disabilities compared to women without disabilities (22.2%, n=946, p<.05). CONCLUSIONS: The overall prevalence of sexual activity and contraceptive use was similar for women with and without physical or cognitive disabilities. Method use at last intercourse varied based on presence and type of disability, especially for use of permanent contraception. IMPLICATIONS: Although women with disabilities were sexually active and used contraception at similar rates as women without disabilities, contraception use varied by disability type, suggesting the importance of this factor in reproductive health decision-making among patients and providers, and the value of further research to identify reasons why this occurs.

The Guide to Community Preventive Services and Disability Inclusion.

INTRODUCTION: Approximately 40 million people in the U.S. identify as having a serious disability, and people with disabilities experience many health disparities compared with the general population. The Guide to Community Preventive Services (The Community Guide) identifies evidence-based programs and policies recommended by the Community Preventive Services Task Force (Task Force) to promote health and prevent disease. The Community Guide was assessed to answer the questions: are Community Guide public health intervention recommendations applicable to people with disabilities, and are adaptations required? METHODS: An assessment of 91 recommendations from The Community Guide was conducted for 15 health topics by qualitative analysis involving three data approaches: an integrative literature review (years 1980-2011), key informant interviews, and focus group discussion during 2011. RESULTS: Twenty-six recommended interventions would not need any adaptation to be of benefit to people with disabilities. Forty-one recommended interventions could benefit from adaptations in communication and technology; 33 could benefit from training adaptations; 31 from physical accessibility adaptations; and 16 could benefit from other adaptations, such as written policy changes and creation of peer support networks. Thirty-eight recommended interventions could benefit from one or more adaptations to enhance disability inclusion. CONCLUSIONS: As public health and healthcare systems implement Task Force recommendations, identifying and addressing barriers to full participation for people with disabilities is important so that interventions reach the entire population. With appropriate adaptations, implementation of recommendations from The Community Guide could be successfully expanded to address the needs of people with disabilities.

Socioeconomic Factors at the Intersection of Race and Ethnicity Influencing Health Risks for People with Disabilities.

OBJECTIVES: People with disabilities are known to experience disparities in behavioral health risk factors including smoking and obesity. What is unknown is how disability, race/ethnicity, and socioeconomic status combine to affect prevalence of these health behaviors. We assessed the association between race/ethnicity, socioeconomic factors (income and education), and disability on two behavioral health risk factors. METHODS: Data from the 2007-2010 Behavioral Risk Factor Surveillance System were used to determine prevalence of cigarette smoking and obesity by disability status, further stratified by race and ethnicity as well as income and education. Logistic regression was used to determine associations of income and education with the two behavioral health risk factors, stratified by race and ethnicity. RESULTS: Prevalence of disability by race and ethnicity ranged from 10.1 % of Asian adults to 31.0 % of American Indian/Alaska Native (AIAN) adults. Smoking prevalence increased with decreasing levels of income and education for most racial and ethnic groups, with over half of white (52.4 %) and AIAN adults (59.3 %) with less than a high school education reporting current smoking. Education was inversely associated with obesity among white, black, and Hispanic adults with a disability. CONCLUSION: Smoking and obesity varied by race and ethnicity and socioeconomic factors (income and education) among people with disabilities. Our findings suggest that disparities experienced by adults with disabilities may be compounded by disparities associated with race, ethnicity, and socioeconomic factors. This knowledge may help programs in formulating health promotion strategies targeting people at increased risk for smoking and obesity, inclusive of those with disabilities.

Prevalence and Causes of Paralysis-United States, 2013.

OBJECTIVES: To estimate the prevalence and causes of functional paralysis in the United States. METHODS: We used the 2013 US Paralysis Prevalence & Health Disparities Survey to estimate the prevalence of paralysis, its causes, associated sociodemographic characteristics, and health effects among this population. RESULTS: Nearly 5.4 million persons live with paralysis. Most persons with paralysis were younger than 65 years (72.1%), female (51.7%), White (71.4%), high school graduates (64.8%), married or living with a partner (47.4%), and unable to work (41.8%). Stroke is the leading cause of paralysis, affecting 33.7% of the population with paralysis, followed by spinal cord injury (27.3%), multiple sclerosis (18.6%), and cerebral palsy (8.3%). CONCLUSIONS: According to the functional definition, persons living with paralysis represent a large segment of the US population, and two thirds of them are between ages 18 and 64 years. Targeted health promotion that uses inclusion strategies to account for functional limitations related to paralysis can be undertaken in partnership with state and local health departments.

Vital Signs: National and State-Specific Patterns of Attention Deficit/Hyperactivity Disorder Treatment Among Insured Children Aged 2-5 Years - United States, 2008-2014.

BACKGROUND: Attention deficit/hyperactivity disorder (ADHD) is associated with adverse outcomes and elevated societal costs. The American Academy of Pediatrics (AAP) 2011 guidelines recommend "behavior therapy" over medication as first-line treatment for children aged 4-5 years with ADHD; these recommendations are consistent with current guidelines from the American Academy of Child and Adolescent Psychiatry for younger children. CDC analyzed claims data to assess national and state-level ADHD treatment patterns among young children. METHODS: CDC compared Medicaid and employer-sponsored insurance (ESI) claims for "psychological services" (the procedure code category that includes behavior therapy) and ADHD medication among children aged 2-5 years receiving clinical care for ADHD, using the MarketScan commercial database (2008-2014) and Medicaid (2008-2011) data. Among children with ESI, ADHD indicators were compared during periods preceding and following the 2011 AAP guidelines. RESULTS: In both Medicaid and ESI populations, the percentage of children aged 2-5 years receiving clinical care for ADHD increased over time; however, during 2008-2011, the percentage of Medicaid beneficiaries receiving clinical care was double that of ESI beneficiaries. Although state percentages varied, overall nationally no more than 55% of children with ADHD received psychological services annually, regardless of insurance type, whereas approximately three fourths received medication. Among children with ESI, the percentage receiving psychological services following release of the guidelines decreased significantly by 5%, from 44% in 2011 to 42% in 2014; the change in medication treatment rates (77% in 2011 compared with 76% in 2014) was not significant. CONCLUSIONS AND COMMENTS: Among insured children aged 2-5 years receiving clinical care for ADHD, medication treatment was more common than receipt of recommended first-line treatment with psychological services. Among children with ADHD who had ESI, receipt of psychological services did not increase after release of the 2011 guidelines. Scaling up evidence-based behavior therapy might lead to increased delivery of effective ADHD management without the side effects of ADHD medications.

Prevalence and Characteristics of Sexual Violence Against Men with Disabilities.

INTRODUCTION: Few studies have examined lifetime and past-year sexual violence against men with disabilities and the types of perpetrator-survivor relationships among men with disabilities. The purpose of this study is to document the prevalence of lifetime and past-year sexual violence against men with disabilities in the U.S., compare these estimates with those of men without disabilities and women with and without disabilities, and examine the gender and relationship of the perpetrator of sexual violence against men with disabilities relative to perpetrator characteristics identified in incidents against other adults. METHODS: Behavioral Risk Factor Surveillance System 2005-2007 data were analyzed in 2014 using domain analysis and multivariate logistic regression. RESULTS: Men with a disability were more likely than men without a disability to report lifetime sexual violence (8.8% vs 6.0%). They were also more likely than men without a disability to report lifetime experience of attempted or completed nonconsensual sex (5.8% and 2.3% vs 4.1% and 1.4%, respectively). There were no statistically significant differences between the two groups of men's reports of their relationship to the perpetrator of the most recent incident of sexual violence or perpetrator gender. CONCLUSIONS: Men with disabilities are at heightened risk for lifetime and current sexual violence compared with men without disabilities. Given the relatively high prevalence of sexual violence among people with disabilities of both genders, sexual assault screening, prevention, and response efforts need to be inclusive and attentive to all people with disabilities.

Development of a community health inclusion index: an evaluation tool for improving inclusion of people with disabilities in community health initiatives.

BACKGROUND: Community health initiatives often do not provide enough supports for people with disabilities to fully participate in healthy, active living opportunities. The purpose of this study was to design an instrument that focused on integrating disability-related items into a multi-level survey tool that assessed healthy, active living initiatives. METHODS: The development and testing of the Community Health Inclusion Index (CHII) involved four components: (a) literature review of studies that examined barriers and facilitators to healthy, active living; (b) focus groups with persons with disabilities and professionals living in geographically diverse settings; (c) expert panel to establish a final set of critical items; and (d) field testing the CHII in 164 sites across 15 communities in 5 states to assess the instrument's reliability. RESULTS: Results from initial analysis of these data indicated that the CHII has good reliability. Depending on the subscale, Cronbach's alpha ranged from 0.700 to 0.965. The CHII's inter-rater agreement showed that 14 of the 15 venues for physical activity or healthy eating throughout a community had strong agreement (0.81 - 1.00), while one venue had substantial agreement (0.61 - 0.80). CONCLUSION: The CHII is the first instrument to operationalize community health inclusion into a comprehensive assessment tool that can be used by public health professionals and community coalitions to examine the critical supports needed for improving healthy, active living among people with disabilities.

Obesity in children with developmental and/or physical disabilities.

Children with developmental or physical disabilities, many of whom face serious health-related conditions, also are affected by the current obesity crisis. Although evidence indicates that children with disabilities have a higher prevalence of obesity than do children without disabilities, little is known of the actual magnitude of the problem in this population. To address this concern, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) held a conference on obesity in children with intellectual, developmental, or physical disabilities, bringing together scientists and practitioners in the fields of obesity and disability to foster collaboration, identify barriers to healthy weight status in populations with disabilities, propose avenues to solutions through research and practice, and develop a research agenda to address the problem. This article describes current knowledge about prevalence of obesity in this population, discusses factors influencing obesity risk, and summarizes recommendations for research presented at the conference.

Using the international classification of functioning, disability and health to expand understanding of paralysis in the United States through improved surveillance.

BACKGROUND: Surveillance on paralysis prevalence has been conceptually and methodologically challenging. Numerous methods have been used to approximate population-level paralysis prevalence estimates leading to widely divergent prevalence estimates. OBJECTIVE/HYPOTHESES: To describe three phases in use of the International Classification of Functioning, Disability and Health (ICF) as a framework and planning tool for defining paralysis and developing public health surveillance of this condition. METHODS: Description of the surveillance methodology covers four steps: an assessment of prior data collection efforts that included a review of existing surveys, registries and other data collection efforts designed to capture both case definitions in use and prevalence of paralysis; use of a consensus conference of experts to develop a case definition of paralysis based on the ICF rather than medical diagnostic criteria; explanation of use of the ICF framework for domains of interest to develop, cognitively test, validate and administer a brief self-report questionnaire for telephone administration on a population; and development and administration of a Paralysis Prevalence and Health Disparities Survey that used content mapping to back code items from existing national surveys to operationalize key domains. RESULTS: ICF coding led to a national population-based survey of paralysis that produced accurate estimates of prevalence and identification of factors related to the health of people in the U.S. living with paralysis. CONCLUSIONS: The ICF can be a useful tool for developing valid and reliable surveillance strategies targeting subgroups of individuals with functional disabilities such as people with paralysis and others.

Understanding the context of health for persons with multiple chronic conditions: moving from what is the matter to what matters.

PURPOSE: An isolated focus on 1 disease at a time is insufficient to generate the scientific evidence needed to improve the health of persons living with more than 1 chronic condition. This article explores how to bring context into research efforts to improve the health of persons living with multiple chronic conditions (MCC). METHODS: Forty-five experts, including persons with MCC, family and friend caregivers, researchers, policy makers, funders, and clinicians met to critically consider 4 aspects of incorporating context into research on MCC: key contextual factors, needed research, essential research methods for understanding important contextual factors, and necessary partnerships for catalyzing collaborative action in conducting and applying research. RESULTS: Key contextual factors involve complementary perspectives across multiple levels: public policy, community, health care systems, family, and person, as well as the cellular and molecular levels where most research currently is focused. Needed research involves moving from a disease focus toward a person-driven, goal-directed research agenda. Relevant research methods are participatory, flexible, multilevel, quantitative and qualitative, conducive to longitudinal dynamic measurement from diverse data sources, sufficiently detailed to consider what works for whom in which situation, and generative of ongoing communities of learning, living and practice. Important partnerships for collaborative action include cooperation among members of the research enterprise, health care providers, community-based support, persons with MCC and their family and friend caregivers, policy makers, and payers, including government, public health, philanthropic organizations, and the business community. CONCLUSION: Consistent attention to contextual factors is needed to enhance health research for persons with MCC. Rigorous, integrated, participatory, multimethod approaches to generate new knowledge and diverse partnerships can be used to increase the relevance of research to make health care more sustainable, safe, equitable and effective, to reduce suffering, and to improve quality of life.

Vital signs: disability and physical activity--United States, 2009-2012.

BACKGROUND: Adults with disabilities are less active and have higher rates of chronic disease than the general population. Given the health benefits of physical activity, understanding physical activity, its relationship with chronic disease, and health professional recommendations for physical activity among young to middle-age adults with disabilities could help increase the effectiveness of health promotion efforts. METHODS: Data from the 2009-2012 National Health Interview Survey (NHIS) were used to estimate the prevalence of, and association between, aerobic physical activity (inactive, insufficiently active, or active) and chronic diseases (heart disease, stroke, diabetes, and cancer) among adults aged 18-64 years by disability status and type (hearing, vision, cognitive, and mobility). The prevalence of, and association between, receiving a health professional recommendation for physical activity and level of aerobic physical activity was assessed using 2010 data. RESULTS: Overall, 11.6% of U.S. adults aged 18-64 years reported a disability, with estimates for disability type ranging from 1.7% (vision) to 5.8% (mobility). Compared with adults without disabilities, inactivity was more prevalent among adults with any disability (47.1% versus 26.1%) and for adults with each type of disability. Inactive adults with disabilities were 50% more likely to report one or more chronic diseases than those who were physically active. Approximately 44% of adults with disabilities received a recommendation from a health professional for physical activity in the past 12 months. CONCLUSIONS: Almost half of adults with disabilities are physically inactive and are more likely to have a chronic disease. Among adults with disabilities who visited a health professional in the past 12 months, the majority (56%) did not receive a recommendation for physical activity. IMPLICATIONS FOR PUBLIC HEALTH: These data highlight the need for increased physical activity among persons with disabilities, which might require support across societal sectors, including government and health care.

Health disparities of adults with intellectual disabilities: what do we know? What do we do?

BACKGROUND: Recent attention to health of people with intellectual disabilities has used a health disparities framework. Building on historical context, the paper summarizes what is known about health disparities from reports and research and provide direction on what to do to reduce these disparities among adults with intellectual disabilities. METHODS: The present authors examined literature from 2002 to 2011 on health disparities and people with disabilities looking for broad themes on documenting disparities and on research approaches and methods. RESULTS: Multiple countries published reports on health of people with intellectual disabilities. Researchers summarized existing research within a health disparities framework. A number of promising methodologies are identified such as health services research, health indicators, enhanced surveillance and mixed-methods. CONCLUSIONS: Strategies to reduce health disparities include use of data to educate decision makers, attention to social determinants and a life-course model and emphasis on leveraging inclusion in mainstream services where possible.

Reducing Obesity Among People With Disabilities.

Achieving healthy weight for people with disabilities in the United States is a challenge. Obesity rates for adults and children with disabilities are significantly higher than for those without disabilities, with differences remaining even when controlling for other factors. Reasons for this disparity include lack of healthy food options for many people with disabilities living in restrictive environments, difficulty with chewing or swallowing food, medication use contributing to changes in appetite, physical limitations that can reduce a person's ability to exercise, constant pain, energy imbalance, lack of accessible environments in which to exercise or fully participate in other activities, and resource scarcity among many segments of the disability population. In order for there to be a coordinated national effort to address this issue, a framework needs to be developed from which research, policy, and practice can emerge. This paper reviews existing literature and presents a conceptual model that can be used to inform such a framework, provides examples of promising practices, and discusses challenges and opportunities moving forward.

Disability, health, and multiple chronic conditions among people eligible for both Medicare and Medicaid, 2005-2010.

INTRODUCTION: People who are eligible for both Medicare and Medicaid (dual eligibles) and who have disabilities and multiple chronic conditions (MCC) present challenges for treatment, preventive services, and cost-effective access to care within the US health system. We sought to better understand dual eligibles and their association with MCC, accounting for sociodemographic factors inclusive of functional disability category. METHODS: Medical Expenditure Panel Survey (MEPS) data for 2005 through 2010 were stratified by ages 18 to 64 and 65 or older to account for unique subsets of dual eligibles. Prevalence of MCC was calculated for those with physical disabilities, physical plus cognitive disabilities, and all others, accounting for sociodemographic and health-related factors. Adjusted odds for having MCC were calculated by using logistic regression. RESULTS: Of dual eligibles aged 18 to 64, 53% had MCC compared with 73.5% of those aged 65 or older. Sixty-five percent of all dual eligibles had 2 or more chronic conditions, and among dual eligibles aged 65 or older with physical disabilities and cognitive limitations, 35% had 4 or more, with hypertension and arthritis the most common conditions. Dual eligibles aged 18 to 64 who had a usual source of medical care had a 127% increased likelihood of having MCC compared with those who did not have a usual source of care. CONCLUSION: Attention to disability can be a component to helping further understand the relationship between health and chronic conditions for dual eligible populations and other segments of our society with complex health and medical needs.

Understanding the social factors that contribute to diabetes: a means to informing health care and social policies for the chronically ill.

Social determinants of health are the conditions in which individuals are born, grow, live, work, and age. Increasingly, they are being recognized for their relationship to the soaring incidence of Type 2 diabetes in the US, as well as the opportunities they present for us to counter it. Many current Type 2 diabetes interventions focus on biologic and behavioral factors, such as symptoms, diet, and physical activity. However, it is equally important to address the influence of physical and social environments, which may include low income, employment insecurity, low educational attainment, and poor living conditions, on health outcomes. Section 4302 of the Patient Protection and Affordable Care Act of 2010 offers an opportunity to improve data collection and policy development to more effectively identify populations at high risk for developing Type 2 diabetes and to proactively refer them to appropriate social support services that may ultimately support reduction of health disparities. Expanding the scope of this legislation to include data that incorporate social determinants would improve the ability of clinicians and health systems to engage and to treat patients with chronic conditions, such as Type 2 diabetes, while expanding policymakers' ability to conform to the legislation's intent of shaping efforts to reduce chronic conditions nationwide.

Using population-based data to examine preventive services by disability type among dually eligible (Medicare/Medicaid) adults.

BACKGROUND: Individuals dually eligible for Medicaid and Medicare constitute a small percentage of these program's populations but account for a disproportionately large percent of their total costs. While much work has examined high expenditures, little is known about their health and details of their health care utilization. OBJECTIVE/HYPOTHESIS: Utilize an important public health surveillance tool to better understand preventive service use among the dual eligible population. METHODS: This study involved descriptive and regression analyses of dual eligibles in the Medical Expenditure Panel Survey data from pooled alternate years 2000-2008. We classified the sample into 4 mutually exclusive groups: cognitive limitations, physical disabilities, double diagnosis (cognitive limitations and physical disability), or neither cognitive limitations nor physical disability. RESULTS: For most groups, age was significantly associated with preventive services, though direction varies. Older age was linked to greater receipt of flu shots while younger age was associated with greater receipt of Pap tests, mammograms and dental services. Black women in all groups (except cognitive limitations) had an increased likelihood of receiving a Pap test and a mammogram. CONCLUSIONS: A subset of dual eligibles drives the majority of expenditures. People with physical disabilities, regardless of whether they also have a cognitive limitation, are among the highest costing and sickest of our non-institutionalized dual eligible population. Efforts to understand and address the challenges faced by women with physical disabilities in accessing Pap tests or mammograms may be helpful in improving the overall health status for this disability group, but also for all dual eligibles.