Remote Delivery of Allied and Behavioral Healthcare During COVID-19 for Children With Developmental Disabilities.

Objective: Many children with autism spectrum disorder (ASD) and other developmental disabilities (DD) transitioned to telehealth services due to the COVID-19 pandemic. Our objectives were to describe reductions in allied and behavioral healthcare services and receipt of caregiver training to deliver services at home because of COVID-19 for children with ASD and other DD, and factors associated with worse response to remote delivery of services for children with ASD. Method: Prior to the pandemic, children 2 to 5 years of age were enrolled in a multi-site case-control study and completed a developmental assessment. Caregivers completed questionnaires on child behavior problems and ASD symptoms. Children were classified as having ASD vs another DD based on standardized diagnostic measures. Subsequently, caregivers completed a survey during January to June 2021 to assess how COVID-19 affected children and families. Results: Caregivers reported that most children with ASD and other DD had a decrease in service hours (50.0%-76.9% by service type) during the COVID-19 pandemic. Children with ASD were significantly more likely to experience reduced speech/language therapy than children with other DD. Receipt of caregiver training to deliver services at home ranged from 38.1% to 57.4% by service type. Among children with ASD, pre-pandemic problems with internalizing behaviors and social communication/interaction were associated with worse response to behavioral telehealth but no other common therapies. Conclusion: Our study demonstrates the caregiver-reported impacts of COVID-19 on remote delivery of allied and behavioral healthcare services for children with ASD and other DD. Considerations for caregiver support and remote delivery of services are provided.

Health and Education Services During the COVID-19 Pandemic Among Young Children with Autism Spectrum Disorder and Other Developmental Disabilities.

OBJECTIVE: Understanding how the COVID-19 pandemic affected children with disabilities is essential for future public health emergencies. We compared children with autism spectrum disorder (ASD) with those with another developmental disability (DD) and from the general population (POP) regarding (1) missed or delayed appointments for regular health/dental services, immunizations, and specialty services; (2) reasons for difficulty accessing care; and (3) use of remote learning and school supports. METHOD: Caregivers of children previously enrolled in the Study to Explore Early Development, a case-control study of children with ASD implemented during 2017 to 2020, were recontacted during January-June 2021 to learn about services during March-December 2020. Children were classified as ASD, DD, or POP during the initial study and were aged 3.4 to 7.5 years when their caregivers were recontacted during the pandemic. RESULTS: Over half of all children missed or delayed regular health/dental appointments (58.4%-65.2%). More children in the ASD versus DD and POP groups missed or delayed specialty services (75.7%, 58.3%, and 22.8%, respectively) and reported difficulties obtaining care of any type because of issues using telehealth and difficulty wearing a mask. During school closures, a smaller proportion of children with ASD versus another DD were offered live online classes (84.3% vs 91.1%), while a larger proportion had disrupted individualized education programs (50.0% vs 36.2%). CONCLUSION: Minimizing service disruptions for all children and ensuring continuity of specialty care for children with ASD is essential for future public health emergencies. Children may need additional services to compensate for disruptions during the pandemic.

The role of funded partnerships in working towards decreasing COVID-19 vaccination disparities, United States, March 2021-December 2022.

During the COVID-19 vaccination rollout from March 2021- December 2022, the Centers for Disease Control and Prevention funded 110 primary and 1051 subrecipient partners at the national, state, local, and community-based level to improve COVID-19 vaccination access, confidence, demand, delivery, and equity in the United States. The partners implemented evidence-based strategies among racial and ethnic minority populations, rural populations, older adults, people with disabilities, people with chronic illness, people experiencing homelessness, and other groups disproportionately impacted by COVID-19. CDC also expanded existing partnerships with healthcare professional societies and other core public health partners, as well as developed innovative partnerships with organizations new to vaccination, including museums and libraries. Partners brought COVID-19 vaccine education into farm fields, local fairs, churches, community centers, barber and beauty shops, and, when possible, partnered with local healthcare providers to administer COVID-19 vaccines. Inclusive, hyper-localized outreach through partnerships with community-based organizations, faith-based organizations, vaccination providers, and local health departments was critical to increasing COVID-19 vaccine access and building a broad network of trusted messengers that promoted vaccine confidence. Data from monthly and quarterly REDCap reports and monthly partner calls showed that through these partnerships, more than 295,000 community-level spokespersons were trained as trusted messengers and more than 2.1 million COVID-19 vaccinations were administered at new or existing vaccination sites. More than 535,035 healthcare personnel were reached through outreach strategies. Quality improvement interventions were implemented in healthcare systems, long-term care settings, and community health centers resulting in changes to the clinical workflow to incorporate COVID-19 vaccine assessments, recommendations, and administration or referrals into routine office visits. Funded partners' activities improved COVID-19 vaccine access and addressed community concerns among racial and ethnic minority groups, as well as among people with barriers to vaccination due to chronic illness or disability, older age, lower income, or other factors.

Lessons learned: COVID-19 vaccinations and people with disabilities.

This manuscript is being submitted as a Commentary; Abstract not applicable.

Breastfeeding by Disability Status in the United States: Pregnancy Risk Assessment Monitoring System, 2018-2020.

Objectives. To describe breastfeeding initiation and breastfeeding at 1, 2, and 3 months, and information sources on breastfeeding among women with a recent live birth by disability status. Methods. We analyzed October 2018 to December 2020 data from the Pregnancy Risk Assessment Monitoring System for 24 sites in the United States that included the Washington Group Short Set of Questions on Disability (seeing, hearing, walking or climbing stairs, remembering or concentrating, self-care, communicating). We defined disability as reporting "a lot of difficulty" or "cannot do this at all" on any of these questions. Results. Among 39 673 respondents, 6.0% reported disability. In adjusted analyses, breastfeeding was lower among respondents with disability at 2 (62.6% vs 66.6%; adjusted prevalence ratio [APR] = 0.94; 95% confidence interval [CI] = 0.89, 0.99) and 3 months (54.7% vs 59.6%; APR = 0.92; 95% CI = 0.86, 0.98) than those without disability. Respondents with disability were less likely to receive information from health care providers or support professionals (89.3% vs 92.3%), but as likely from breastfeeding or lactation specialists (78.1% vs 75.3%). Conclusions. Strategies to ensure women with disability, receive breastfeeding support, including breastfeeding information, could improve breastfeeding outcomes. (Am J Public Health. 2024;114(1):108-117. https://doi.org/10.2105/AJPH.2023.307438).

Alcohol Use, Screening, and Brief Intervention Among Pregnant Persons - 24 U.S. Jurisdictions, 2017 and 2019.

Alcohol use during pregnancy is a major preventable cause of adverse alcohol-related outcomes, including birth defects and developmental disabilities.* Alcohol screening and brief intervention (ASBI) is an evidence-based primary care tool that has been shown to prevent or reduce alcohol consumption during pregnancy; interventions have resulted in an increase in the proportion of pregnant women reporting abstinence (odds ratio = 2.26; 95% CI = 1.43-3.56) (1). Previous national estimates have not characterized ASBI in populations of pregnant persons. Using 2017 and 2019 Behavioral Risk Factor Surveillance System (BRFSS) data, CDC examined prevalence of ASBI and characteristics of pregnant persons and nonpregnant women aged 18-49 years (reproductive-aged women) residing in jurisdictions that participated in the BRFSS ASBI module. During their most recent health care visit within the past 2 years, approximately 80% of pregnant persons reported being asked about their alcohol use; however, only 16% of pregnant persons who self-reported current drinking at the time of the survey (at least one alcoholic beverage in the past 30 days) were advised by a health care provider to quit drinking or reduce their alcohol use. Further, the prevalence of screening among pregnant persons who did not graduate from high school was lower than that among those who did graduate from high school or had at least some college education. This gap between screening and brief intervention, along with disparities in screening based on educational level, indicate missed opportunities to reduce alcohol use during pregnancy. Strategies to enhance ASBI during pregnancy include integrating screenings into electronic health records, increasing reimbursement for ASBI services, developing additional tools, including electronic ASBI, that can be implemented in a variety of settings (2,3).

Severity of Coronavirus Disease 2019 Hospitalization Outcomes and Patient Disposition Differ by Disability Status and Disability Type.

BACKGROUND: Systemic inequities may place people with disabilities at higher risk of severe coronavirus disease 2019 (COVID-19) illness or lower likelihood to be discharged home after hospitalization. We examined whether severity of COVID-19 hospitalization outcomes and disposition differ by disability status and disability type. METHODS: In a retrospective analysis of April 2020-November 2021 hospital-based administrative data among 745 375 people hospitalized with COVID-19 from 866 US hospitals, people with disabilities (n = 120 360) were identified via ICD-10-CM codes. Outcomes compared by disability status included intensive care admission, invasive mechanical ventilation (IMV), in-hospital mortality, 30-day readmission, length of stay, and disposition (discharge to home, long-term care facility (LTCF), or skilled nursing facility (SNF). RESULTS: People with disabilities had increased risks of IMV (adjusted risk ratio [aRR]: 1.05; 95% confidence interval [CI]: 1.03-1.08) and in-hospital mortality (1.04; 1.02-1.06) compared to those with no disability; risks were higher among people with intellectual and developmental disabilities (IDD) (IMV [1.34; 1.28-1.40], mortality [1.31; 1.26-1.37]), or mobility disabilities (IMV [1.13; 1.09-1.16], mortality [1.04; 1.01-1.07]). Risk of readmission was increased among people with any disability (1.23; 1.20-1.27) and each disability type. Risks of discharge to a LTCF (1.45, 1.39-1.51) or SNF (1.78, 1.74-1.81) were increased among community-dwelling people with each disability type. CONCLUSIONS: Severity of COVID-19 hospitalization outcomes vary by disability status and type; IDD and mobility disabilities were associated with higher risks of severe outcomes. Disparities such as differences in discharge disposition by disability status require further study, which would be facilitated by standardized data on disability. Increased readmission across disability types indicates a need to improve discharge planning and support services.

COVID-19 Cases and Hospitalizations Among Medicare Beneficiaries With and Without Disabilities - United States, January 1, 2020-November 20, 2021.

Approximately 27% of adults in the United States live with a disability,* some of whom qualify for Medicare benefits. Persons with disabilities are at increased risk for severe COVID-19-associated outcomes compared with the general population (1); however, existing studies have limited generalizability† or only pertain to a specific disability (e.g., intellectual) (2). Older age is also associated with COVID-19-associated hospitalization and death, but the extent to which age might contribute to increased risk for severe COVID-19-associated outcomes among persons with disabilities is unknown (3). To describe the impact of COVID-19 on persons with disabilities and whether and how age contributes to disease rates, CDC assessed COVID-19 cases and hospitalizations during January 2020-November 2021, among Centers for Medicare & Medicaid Services (CMS) Medicare beneficiaries aged ≥18 years who were either eligible because of a disability (disability-eligible§) or only eligible because of age ≥65 years (age-eligible). COVID-19 incidence and hospitalization rates were higher in the disability-eligible group (10,978 and 3,148 per 100,000 population, respectively) throughout the study period compared with the age-eligible group (8,102 and 2,129 per 100,000 population, respectively). Both COVID-19 incidence and hospitalization rates increased with age in both disability- and age-eligible beneficiaries. American Indian or Alaska Native (AI/AN) persons had the highest disability-eligible (4,962 per 100,000) and age-eligible (5,024 per 100,000) hospitalization rates. Among all other racial and ethnic groups, hospitalization rates were higher among disability-eligible than among age-eligible patients. COVID-19 incidence and hospitalization rates among disability-eligible Medicare beneficiaries were disproportionally higher than rates among age-eligible beneficiaries. Collection of disability status as a core demographic variable in public health surveillance data and identification, as well as the addition of disability questions in other existing data sources can guide research and development of interventions for persons with disabilities. Efforts to increase access to and use of COVID-19 prevention and treatment strategies, including activities that support equitable vaccine access regardless of the substantial challenges that older adults and persons with disability face, are critical to reducing severe COVID-19-associated outcomes among these groups.

Mental Health and Substance Use Among Adults with Disabilities During the COVID-19 Pandemic - United States, February-March 2021.

Adults with disabilities, a group including >25% of U.S. adults (1), experience higher levels of mental health and substance use conditions and lower treatment rates than do adults without disabilities* (2,3). Survey data collected during April-September 2020 revealed elevated adverse mental health symptoms among adults with disabilities (4) compared with the general adult population (5). Despite disproportionate risk for infection with SARS-CoV-2, the virus that causes COVID-19, and COVID-19-associated hospitalization and mortality among some adults with disabilities (6), information about mental health and substance use in this population during the pandemic is limited. To identify factors associated with adverse mental health symptoms and substance use among adults with disabilities, the COVID-19 Outbreak Public Evaluation (COPE) Initiative† administered nonprobability-based Internet surveys to 5,256 U.S. adults during February-March 2021 (response rate = 62.1%). Among 5,119 respondents who completed a two-item disability screener, nearly one third (1,648; 32.2%) screened as adults with disabilities. These adults more frequently experienced symptoms of anxiety or depression (56.6% versus 28.7%, respectively), new or increased substance use (38.8% versus 17.5%), and suicidal ideation (30.6% versus 8.3%) than did adults without disabilities. Among all adults who had received a diagnosis of mental health or substance use conditions, adults with disabilities more frequently (42.6% versus 35.3%; p <0.001) reported that the pandemic made it harder for them to access related care or medication. Enhanced mental health and substance use screening among adults with disabilities and improved access to medical services are critical during public health emergencies such as the COVID-19 pandemic.

Self-reported handwashing and surface disinfection behaviors by U.S. adults with disabilities to prevent COVID-19, Spring 2020.

BACKGROUND: Handwashing and surface cleaning and disinfection are two hygiene behaviors promoted to prevent the spread of COVID-19. Persons with disabilities may be at increased risk for severe COVID-19 illness due to underlying medical conditions that have been associated with COVID-19. OBJECTIVE: This study aims to describe self-reported hygiene behaviors among U.S. adults with disabilities to prevent transmission of COVID-19. METHODS: Data were obtained from the March 2020 Porter Novelli ConsumerStyles survey. This study includes 6463 U.S. adults (≥18 years) who participated in the survey (58.2% response rate). Participants were asked about frequent handwashing and surface disinfection. Participants were also asked six questions to assess disability status and disability type. Prevalence estimates with 95% confidence intervals were calculated; chi-square tests were conducted. RESULTS: A total of 1295 (20.3%) of survey participants reported at least one disability and their hygiene-related behavior. Overall, 91.3% of respondents with disabilities reported frequent handwashing; only 72% reported frequent surface disinfection. Those with hearing, vision, cognition, mobility, self-care, and independent living disabilities (range: 77.9%-90.6%) were significantly less likely than those without any disability (94.0%) to report frequent handwashing. People with vision (62.2%) and independent living (66.8%) disabilities were less likely to report frequent surface disinfection than those without any disability (74.6%). CONCLUSIONS: Practices such as handwashing and disinfecting surfaces are effective for reducing and preventing the spread of COVID-19. Promotion of hygiene-related practices among people with disabilities is essential. Tailored communications and implementation of evidence-based strategies are needed to address hygiene-related behaviors among the subgroups of people with disabilities most affected.

Delay or Avoidance of Medical Care Because of COVID-19-Related Concerns - United States, June 2020.

Temporary disruptions in routine and nonemergency medical care access and delivery have been observed during periods of considerable community transmission of SARS-CoV-2, the virus that causes coronavirus disease 2019 (COVID-19) (1). However, medical care delay or avoidance might increase morbidity and mortality risk associated with treatable and preventable health conditions and might contribute to reported excess deaths directly or indirectly related to COVID-19 (2). To assess delay or avoidance of urgent or emergency and routine medical care because of concerns about COVID-19, a web-based survey was administered by Qualtrics, LLC, during June 24-30, 2020, to a nationwide representative sample of U.S. adults aged ≥18 years. Overall, an estimated 40.9% of U.S. adults have avoided medical care during the pandemic because of concerns about COVID-19, including 12.0% who avoided urgent or emergency care and 31.5% who avoided routine care. The estimated prevalence of urgent or emergency care avoidance was significantly higher among the following groups: unpaid caregivers for adults* versus noncaregivers (adjusted prevalence ratio [aPR] = 2.9); persons with two or more selected underlying medical conditions† versus those without those conditions (aPR = 1.9); persons with health insurance versus those without health insurance (aPR = 1.8); non-Hispanic Black (Black) adults (aPR = 1.6) and Hispanic or Latino (Hispanic) adults (aPR = 1.5) versus non-Hispanic White (White) adults; young adults aged 18-24 years versus adults aged 25-44 years (aPR = 1.5); and persons with disabilities§ versus those without disabilities (aPR = 1.3). Given this widespread reporting of medical care avoidance because of COVID-19 concerns, especially among persons at increased risk for severe COVID-19, urgent efforts are warranted to ensure delivery of services that, if deferred, could result in patient harm. Even during the COVID-19 pandemic, persons experiencing a medical emergency should seek and be provided care without delay (3).

Disability and Pregnancy: A Cross-Federal Agency Collaboration to Collect Population-Based Data About Experiences Around the Time of Pregnancy.

Many reproductive-aged women with a disability can achieve successful healthy pregnancies; however, they may face challenges accessing prenatal and postpartum care and finding providers who are knowledgeable about their specific condition. Depending on the nature of the disability, some women may also be at increased risk for adverse maternal and infant outcomes such as pre-eclampsia, infection, anemia, primary cesarean delivery, or preterm birth. Population-based data are needed to better understand the pregnancy and postpartum experiences of women living with disability. The National Institutes of Health and the Centers for Disease Control and Prevention (CDC) collaborated to address these data gaps by leveraging CDC's Pregnancy Risk Assessment Monitoring System (PRAMS) to gather information about disability among women who have had a recent live birth. Data collection began in 2019. Information gathered through PRAMS can be used to guide the development of clinical practices guidelines, intervention programs, and other initiatives of federal, state, and local agencies to improve services and the health of women of reproductive age living with disability.

Understanding and improving health education among first-time parents of infants with sickle cell anemia in Alabama: a mixed methods approach.

With the increase in access to medical information, parents can acquire health information from multiple sources. An understanding of parents' reactions to a newborn infant's diagnosis of sickle cell anemia and how they acquire knowledge can identify parent beliefs and preferences about the process of sickle cell education. This study utilized a sequential exploratory mixed methods design. First, qualitative interviews were conducted with 8 parents of infants with sickle cell anemia to understand the process of health education. Second, quantitative surveys were conducted with 22 other parents to test qualitative findings. Parents of infants with sickle cell anemia expressed a high level of fear at the time of notification of a positive screen. Parents desired an understanding of how to identify acute complications of disease and how sickle cell will alter their child's life. Parents actively sought information at the time they were told their child had sickle cell disease. Sickle cell education should begin at time of notification of positive newborn screening results and address identified parent concerns. Health care providers should build trust with parents and provide them with immediate access to educational materials. Hematologists should work with primary care providers to develop complementary educational programs and resources.

Providing young women with credible health information about bleeding disorders.

BACKGROUND: Approximately 1% of U.S. women may have an undiagnosed bleeding disorder, which can diminish quality of life and lead to life-threatening complications during menstruation, childbirth, and surgery. PURPOSE: To understand young women's knowledge, attitudes, and perceptions about bleeding disorders and determine the preferred messaging strategy (e.g., gain- versus loss-framed messages) for presenting information. METHODS: In September 2010, a web-assisted personal interview of women aged 18-25 years was conducted. Preliminary analyses were conducted in 2011 with final analyses in 2013. In total, 1,243 women participated. Knowledge of blood disorders was tabulated for these respondents. Menstrual experiences of women at risk for a bleeding disorder were compared with those not at risk using chi-square analyses. Perceived influence of gain- versus loss-framed messages also was compared. RESULTS: Participants knew that a bleeding disorder is a condition in which bleeding takes a long time to stop (77%) or blood does not clot (66%). Of the women, 57% incorrectly thought that a bleeding disorder is characterized by thin blood; many were unsure if bleeding disorders involve blood types, not getting a period, or mother and fetus having a different blood type. Women at risk for a bleeding disorder were significantly more likely to report that menstruation interfered with daily activities (36% vs 9%); physical or sports activities (46% vs 21%); social activities (29% vs 7%); and school or work activities (20% vs 9%) than women not at risk. Gain-framed messages were significantly more likely to influence women's decisions to seek medical care than parallel loss-framed messages. Findings suggest that the most influential messages focus on knowing effective treatment is available (86% gain-framed vs 77% loss-framed); preventing pregnancy complications (79% gain- vs 71% loss-framed); and maintaining typical daily activities during menstrual periods. CONCLUSIONS: Lack of information about bleeding disorders is a serious public health concern. Health communications focused on gain-framed statements might encourage symptomatic young women to seek diagnosis and treatment. These findings and corresponding recommendations align with Healthy People 2020 and with CDC's goal of working to promote the health, safety, and quality of life of women at every life stage.

An evaluation of health communication materials for individuals with disabilities developed by three state disability and health programs.

BACKGROUND: Health communication increasingly has been recognized as an important part of public health practice that can help raise awareness of potential health risks, influence attitudes and beliefs, and motivate individuals to change unhealthy behaviors. Yet, few health communication messages exist that target people with disabilities. An evaluation was conducted to assess the relevance and usefulness of health communication materials developed by or disseminated in, or both, three state disability and health programs. METHODS: Health care providers and people with a variety of physical and sensory disabilities participated in the evaluation. Qualitative and quantitative data were collected in each of the three states using key informant interviews, focus groups, and a Web-based provider survey. RESULTS: State program staff reported that health communication strategies and messages should be developed to improve access and remove barriers to health care, provide access to facilities, empower consumers, and educate health care providers about the needs of people with disabilities. Several of these needs are consistent with the needs identified by consumers in the focus groups. Consumers indicated that improvements to the overall content and design of the state-developed health communication materials are needed, yet health care and human service providers who participated in the Web-based survey were generally satisfied with the materials. Nearly all providers reported being aware of the materials; however, consumers were not familiar with the state-developed materials reviewed by the focus groups. CONCLUSIONS: Improvements in the content and dissemination of health promotion materials designed by states are indicated. Implications for public health practice, including recommendations for improving future health communication materials, are addressed in this article.

State-level differences in breast and cervical cancer screening by disability status: United States, 2008.

INTRODUCTION AND BACKGROUND: Despite reported disparities in the use of preventive services by disability status, there has been no national surveillance of breast and cervical cancer screening among women with disabilities in the United States. To address this, we used state-level surveillance data to identify disparities in breast and cervical cancer screening among women by disability status. METHODS: Data from the 2008 Behavioral Risk Factor Surveillance System were used to estimate disability prevalence and state-level differences in breast and cervical cancer screening among women by disability status. RESULTS: Overall, modest differences in breast cancer screening were found; women with a disability were less likely than those without to report receiving a mammogram during the past 2 years (72.2% vs. 77.8%; p < .001). However, disparities in breast cancer screening were more pronounced at the state level. Furthermore, women with a disability were less likely than those without a disability to report receiving a Pap test during the past 3 years (78.9% vs. 83.4%; p < .001). DISCUSSION: This epidemiologic evidence identifies an opportunity for federal and state programs, as well as other stakeholders, to form partnerships to align disability and women's health policies. Furthermore, it identifies the need for increased public awareness and resource allocation to reduce barriers to breast and cervical cancer screening experienced by women with disabilities.

Health, preventive health care, and health care access among women with disabilities in the 1994-1995 National Health Interview Survey, Supplement on Disability.

OBJECTIVES: This study presents national estimates on the health, preventive health care, and health care access of adult women with disabilities. We compared women with 1 or 2 functional limitations (FLs) and > or =3 FLs with women with no FLs. Topics covered included demographic characteristics, selected reported health measures, selected clinical preventive services, and selected access to care indicators and health care coverage. METHODS: Estimates in this report were based on data from the 1994-1995 National Health Interview Survey, Supplement on Disability (NHIS-D). The sample size for women > or =18 years of age used in producing the estimates from the combined 1994 and 1995 NHIS-D was 77,762. RESULTS: An estimated 16% of women > or =18 years of age had difficulty with at least 1 FL. Women with FLs were less likely to rate their health as excellent or very good and more likely to report their health as fair or poor when compared with women with no FLs. Women with FLs were also more likely to report being a current smoker, having hypertension, being overweight, and experiencing mental health problems. Among women > or =65 years of age, those with FLs were also less likely to have received Pap smear tests within the past year and those with > or =3 FLs were less likely to have received mammograms within the past year than women with no FLs. Women with > or =3 FLs were more likely to report being unable to get general medical care, dental care, prescription medicines, or eyeglasses, regardless of age group, compared with women with no FLs. The main reasons reported for being unable to receive general care were financial problems or limitations in insurance. These findings suggest that increased attention to the health care needs of women with disabilities from researchers, clinicians, and public health professionals is warranted.