Covid-19 patterns among adults with intellectual and developmental disability and the general population in New York state during the first year of the pandemic.

BACKGROUND: People with intellectual and developmental disabilities (IDD) in the US, especially those living in group homes, experienced comparatively higher Covid-19 case/case fatality rates than the general population during the first year of the pandemic. There is no information about the patterns of case/case fatality rates during this time. OBJECTIVE: This study compared Covid-19 case/case fatality rates among people with IDD living in residential group homes to the general population across the first year of the pandemic in New York State (NYS). METHODS: Covid-19 positive cases and deaths collected from New York Disability Advocates (NYDA), a coalition of organizations serving individuals with IDD, was compared to data for the NYS general population from the first pandemic year. Case rates/100,000 and case fatality rates were calculated for the study period. Joinpoint Trend Analysis Software was used to analyze patterns in weekly case/case fatality rates. RESULTS: Case fatality rates for people with IDD were higher than for the overall state population throughout the pandemic's first year. Case rates were higher among people with IDD across most of this year. Although the patterns in rates were similar, there was a sharp increase in cases for those with IDD during Fall 2020 beginning eight weeks before the general NYS population and a significant decrease in fatalities in late December 2020 into January 2021. CONCLUSIONS: Consistently higher case fatality rates and significant differences in case/case fatality rates for people with IDD living in group homes require further consideration. Planning for future emergencies will require an enhanced federal/state understanding of the needs of people with IDD and a responsive surveillance system.

Student-Led Workshop on Disability Advocacy.

ABSTRACT: Medical students can be powerful advocates for and in partnership with the disability community, yet opportunities for targeted advocacy training are sparse. In February 2023, a medical student-led workshop on disability advocacy for trainees took place at the Association of Academic Physiatrists' Annual Conference. The aims of this session were for trainees to (1) identify existing gaps in disability education at their institution and in policy around disability-related issues; (2) improve perceived ability to engage in disability-related education and policy-based advocacy; and (3) apply an intersectional lens to identify opportunities for intersectionality in disability advocacy. Pre- and post-session responses were anonymously submitted via Qualtrics. Of 31 pre-survey respondents, 18 responded to the post-survey, and 12 were identified as having matching unique identifiers. After the workshop, participants overall were more likely to report being very/somewhat confident about their ability to identify gaps in disability education at their institution (75.0% vs 100.0%, p = 0.011), policy around disability-related issues (41.7% vs 100.0%, p < 0.006), and opportunities for intersectionality in disability advocacy (33.3% vs 91.7%, p < 0.015). Participants were more likely to report being very/somewhat confident in engaging in education-based advocacy (58.3% vs 100.0%, p = 0.006), policy-based advocacy (16.7% vs 91.7%, p < 0.002) and intersectional disability advocacy (41.7% vs 91.7%, p < 0.006). All attendees strongly/somewhat agreed with the statements "I hope that this session will continue in future years" and "I think that other trainees would benefit from a similar course." This session was shown to effectively meet the intended goals of the program.

Health equity for people with intellectual and developmental disability requires vast improvements to data collection: Lessons from the COVID-19 pandemic.

The COVID-19 pandemic drastically underscored the lack of proper health surveillance for people with intellectual and developmental disability (IDD) in the USA. This data equity failure resulted in researchers having to rely on nontraditional data sources to develop an understanding of how this population was faring during the pandemic. To begin addressing this data equity concern, in this commentary, we (1) discuss the difficulties in accessing data during the pandemic specifically related to people with IDD; (2) provide guidance regarding how existing data can be used to examine COVID-19 outcomes for people with IDD; and (3) provide recommendations for improving data collection for people with IDD in light of lessons learned during the pandemic. In sum, the data currently available to examine COVID-19 as well as other health outcomes among people with IDD are severely limited, compromising the ability to both understand and address health disparities among this population.

Defining pre-existing disability among adults captured by the National Trauma Data Bank: A descriptive assessment of patient characteristics and details of injury.

BACKGROUND: There is limited research on trauma in people with disability (PWD), despite potentially increased risk for trauma and negative outcomes following injury. OBJECTIVE: This study describes characteristics of trauma among both narrow and broad subsamples of PWD. METHODS: Data from the 2016 National Trauma Data Bank was used to identify two Disability Comparison Groups (DCGs). DCG-1 included adult patients with a functionally dependent health status, and DCG-2 included DCG-1 plus other adult patients with disability-associated diagnoses. Trauma characteristics (e.g., signs of life, intent of injury, mechanism of injury, and injury severity score [ISS]) were compared via logistic regression. RESULTS: Among the 782,241 reported trauma events, 39,011 belonged to DCG-1 and 193,513 to DCG-2. Falls caused most instances of trauma across both groups (DCG-1: 88.7 %; DCG-2: 67.3 %). Both DCGs were less likely than patients without disability to arrive at the facility without signs of life (DCG-1:aOR = 0.22, 95%CI 0.15-0.31; DCG-2:aOR = 0.40, 95%CI 0.36-0.45) or to have an ISS greater than 15 (DCG-1:aOR = 0.81, 95%CI 0.79-0.84; DCG-2:aOR = 0.92, 95%CI:0.91-0.94). They were, however, more likely to have an ISS greater than or equal to 8 (DCG-1:aOR = 1.14, 95%CI 1.11-1.16; DCG-2:aOR = 1.06, 95%CI 1.05-1.07). CONCLUSION: PWD have greater odds for moderately scored injuries and presenting with signs of life at U.S. trauma centers compared to patients without disability. However, they can be more likely to have certain intents and mechanisms of trauma depending on their functional status and the nature of their impairment. Differences warrant further and continued assessment of trauma experiences among patients with pre-existing disability.

A call for action: Increasing the pediatric rehabilitation medicine workforce.

Pediatric Rehabilitation Medicine (PRM) is a unique blend of traditional medical rehabilitation knowledge and skills primarily focused on temporary and/or permanent disability conditions of childhood onset throughout the age continuum, with an emphasis on promoting function and participation. Although there are two established pathways to enhance knowledge and skills in PRM, one a combined residency with Pediatrics and the other a PRM fellowship, there has been a relative decline in participants in this training, as has been seen across other subspecialties in Physical Medicine and Rehabilitation (PM&R) and other medical specialties. Based on pediatric rehabilitation physician surveys and the increasing prevalence of children with disabilities, there has been a call to consider opening PRM fellowships to physicians not trained in PM&R. This commentary proposes establishing a commission to lead a transparent and inclusive process to assure that all options to address issues related to optimizing PRM care are considered and provide a course of action to address the needs of children and adults with childhood onset disabilities.

Associations Between Opioid Prescriptions and Use of Hospital-Based Services Among US Adults with Longstanding Physical Disability or Inflammatory Conditions Compared to Other Adults in the Medical Expenditure Panel Survey, 2010-2015.

Purpose: To investigate the association of filling opioid prescriptions with healthcare service utilization among a nationally representative sample of adults with disability. Materials and Methods: The Medical Expenditure Panel Survey (MEPS) for 2010-2015, Panels 15-19, was used to identify adults who were prescribed opioids during each two-year period. We examined the data for associations between opioid prescription filling and the number of emergency department (ED) visits and hospitalizations. The participants were grouped as those with inflammatory conditions or with longstanding physical disability, and a comparison group of those without these conditions. Results and conclusions: Opioid prescription filling differed among adults with inflammatory conditions and longstanding physical disability compared to the comparison group (44.93% and 40.70% vs 18.10%, respectively). For both groups of people with disability, the relative rates for an ED visit or hospitalization were significantly higher for those who filled an opioid prescription, compared to adults with the same conditions who did not fill an opioid prescription. People with a longstanding physical disability who filled an opioid prescription had the highest rate ratio of ED use and hospitalization. Results from this investigation demonstrate that opioid prescription filling among persons with inflammatory conditions and longstanding physical disabilities is associated with higher rates of ED visits and hospitalizations.

Reporting Down syndrome on the death certificate for Alzheimer disease/unspecified dementia deaths.

BACKGROUND: Death certificates are crucial for understanding population health trends including the burden of disease mortality. Accurate reporting of causes of death on these records is necessary in order to implement adequate public health policies and fund disease research. While there is evidence that Alzheimer disease and unspecified dementia are prevalent among people with Down syndrome, a 2014 Centers for Disease Control and Prevention (CDC) rule change instructing that Down syndrome should be reported as the underlying cause of death in instances when death occurred from Alzheimer disease or unspecified dementia threatens the accuracy and the utility of death certificates for this population. METHODS: This study used 15 years (2005-2019) of US death certificate data for adults with and without Down syndrome. We compare the mortality burden due to Alzheimer disease and unspecified dementia prior to and after amending death certificates that report Down syndrome as the underlying cause of death. RESULTS: When analyzing death certificates without addressing the reporting of Down syndrome as the underlying cause of death, rates of death due to Alzheimer disease and dementia ranked as the third leading cause of death for both adults with and without Down syndrome. After amending death certificates that reported Down syndrome as the underlying cause of death, Alzheimer disease and dementia were the leading cause of death among those with Down syndrome, occurring 2.7 times more in adults with compared to without Down syndrome. CONCLUSION: The findings of this study highlight the importance of accurate mortality data for studying and addressing population health trends. The current practice of reporting Down syndrome as the underlying cause of death rather than the disease responsible for death needs to be reconsidered and modified. If not, people with Down syndrome may be further marginalized within dementia related support and research.

COVID-19 mortality burden and comorbidity patterns among decedents with and without intellectual and developmental disability in the US.

BACKGROUND: While there is ample evidence of increased COVID-19 mortality risk among people with intellectual and developmental disability (IDD), research has not documented whether this higher risk resulted in increased COVID-19 mortality burden in the US or whether comorbidity patterns among COVID-19 deaths are similar or distinct for people with IDD. OBJECTIVE: To determine the differences in COVID-19 mortality burden between decedents with and without IDD during the first year of the pandemic. METHODS: This study uses 2020 US death certificate data to compare COVID-19 mortality burden and comorbidity patterns among decedents with and without IDD. RESULTS: COVID-19 was the leading cause of death among decedents with IDD in 2020, compared with the 3rd leading cause among decedents without IDD. The proportion of deaths from COVID-19 was also higher for decedents with compared to without IDD. Comorbidities resulting from COVID-19 were similar among decedents with and without IDD, but there were some differences among reported pre-existing conditions, notably higher rates of hypothyroidism and seizures among decedents with IDD. CONCLUSION: The COVID-19 mortality burden was greater for people with than without IDD during the first year of the pandemic. The continued practice of postmortem diagnostic overshadowing prevents analyzing whether this difference continues through today. Action is needed by the Centers for Disease Control and Prevention to mitigate this data inequity. Out of an abundance of caution, medical providers should carefully monitor symptoms among COVID-19 patients with IDD diagnosed with hypothyroidism and/or seizures.

A Conversation Between Past and Present Chairs of the American Board of Physical Medicine and Rehabilitation: Four Decades of History and the Future of Board Certification.

ABSTRACT: On the 75th anniversary of the founding of the American Board of Physical Medicine and Rehabilitation, 11 of the surviving chairs of the board convened virtually to reflect on the past 40 years of major trends for the accrediting body of physiatrists. The field rapidly expanded in the 1980s, driven by changes in the reimbursement environment. This rapid expansion drove an improvement in the caliber of residents choosing the field and in the quality of training programs. As physical medicine and rehabilitation evolved from a small- to medium-sized specialty, the board addressed many challenges: securing a credible position within the American Board of Medical Specialties; addressing a rising demand for subspecialty certification; improving training and exposure to physiatry; enhancing the quality of the accreditation process; and reducing the burden of accreditation on diplomates. The future development of physiatry includes improving diversity, equity, and inclusion, while restoring provider morale, well-being, and meaningfulness in work. Although challenges remain, physiatry as a field has grown to be well established through the board's efforts and respected within the larger medical community.

The Use of Self-Reported Functional Limitation to Examine Pregnancy and Reproductive Health Experiences in a National Sample of Women.

Context: A lack of consensus in the literature examining reproductive health experiences of women with disability prevails, in part, due to various operational definitions of disability. Methods: Results from the 2015-2016 National Health and Nutrition Examination Survey (NHANES) were utilized to assess reproductive health, disability, and demographic variables among women aged 20-44. Disability was assessed using the six functional limitation subgroups. Analyses included modified Poisson regression and negative binomial regression. Results: One hundred eighty-two (14%) women reported having any functional limitation. Women with at least one functional limitation (WWFL) were significantly more likely than women without a functional limitation (WWOFL) to have had a hysterectomy and had more cesarean deliveries. WWFL did not differ significantly from WWOFL in key pregnancy outcomes (ever been pregnant, number of pregnancies, or number of unsuccessful pregnancies). A high degree of overlap between mobility and self-care (66.1%), cognitive and independent living (61%), and mobility and independent living (37.4%) limitations was found. Conclusions: This work summarizes key reproductive health variables among US women of reproductive age and contextualizes disability experiences through subgroup and overlap analysis. Subgroup analysis results demonstrate the need for detailed operational definitions of disability to accurately capture experiences of women with different limitations, and overlap analysis indicates the interconnectedness of limitations among this group. Findings call for future exploration of reproductive health-related similarities and differences between WWD and women without disability, and employment of detailed operational definitions of disability.

Postmortem Diagnostic Overshadowing: Reporting Cerebral Palsy on Death Certificates.

Postmortem diagnostic overshadowing-defined as inaccurately reporting a disability as the underlying cause of death-occurs for over half of adults with cerebral palsy. This practice obscures cause of death trends, reducing the effectiveness of efforts to reduce premature mortality among this marginalized health population. Using data from the National Vital Statistics System 2005 to 2017 U.S. Multiple Cause of Death files (N = 29,996), we identify factors (sociodemographic characteristics, aspects of the context and processing of death, and comorbidities) associated with the inaccurate reporting of cerebral palsy as the underlying cause of death. Results suggest that inaccurate reporting is associated with heightened contexts of clinical uncertainty, the false equivalence of disability and health, and potential racial-ethnic bias. Ending postmortem diagnostic overshadowing will require training on disability and health for those certifying death certificates and efforts to redress ableist death certification policies.