The Impacts of the COVID-19 Pandemic on Receipt of Needed Medical Care and At-Home Support among U.S. Households Receiving Supplemental Security Income and Social Security Disability Insurance on the Basis of Disability.

More than 8.1 million Americans with disabilities qualify for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). Individuals with disabilities were particularly vulnerable to COVID-19, which may have altered individual and household behavior. Research on the impact of COVID-19 on individuals with disabilities and their families remains limited. Authors analyzed 2020 National Health Interview Survey data. Logistic regression models were applied, controlling for the effects of age, race, sex, income, education, employment, and health status. Households with SSI/SSDI beneficiaries with disabilities were associated with significantly greater odds of delaying or forgoing medical care and receiving needed personal and household care at home due to COVID-19 compared with households without beneficiaries. The health and well-being of households with individuals with disabilities may require more robust and inclusive social work initiatives that aim to reduce adverse pandemic impacts.

Measuring LEND Core Competencies Using Trainee Follow-Up Surveys.

OBJECTIVES: Measuring the value-added impact of Leadership Education in Neurodevelopmental Disabilities and Related Disorders (LEND) training on trainees' leadership and career trajectories is necessary to understand program efficacy. In the current study, we leveraged an existing ex post facto design to develop and test a new measure of LEND competencies and compare outcomes of LEND trainees and comparison peers. METHODS: We developed the LEND Outcomes Follow-Up Survey using a multi-step, mixed methods process. A series of focus groups and consultations with key stakeholders identified eight important LEND leadership outcomes: (1) interdisciplinary work; (2) advocacy; (3) intersectional approach; (4) systems perspective; (5) life course perspective; (6) leadership; (7) engagement with maternal and child health populations; and (8) research experience. We developed and piloted this novel survey to measure these LEND leadership outcomes. We used data collected from this novel measure and an existing survey that is used nationally by LEND, to compare the outcomes of 43 LEND trainees and 30 comparison peers at two years post completion of LEND training. RESULTS: We found that, compared to comparison peers, LEND trainees: (1) worked with a greater number of disciplines; (2) were more likely to be engaged in advocacy; (3) were more likely to utilize a systems perspective in their work; (4) were more likely to work with maternal and child health populations; and (5) were more likely to have experience conducting research. CONCLUSIONS: Our findings suggested that LEND training improves LEND leadership outcomes at two years post-completion of LEND training.

Neuronal membrane glycoprotein (nmgp-1) gene deficiency affects chemosensation-related behaviors, dauer exit and egg-laying in Caenorhabditis elegans.

The nervous system monitors the environment to maintain homeostasis, which can be affected by stressful conditions. Using mammalian models of chronic stress, we previously observed altered brain levels of GPM6A, a protein involved in neuronal morphology. However, GPM6A's role in systemic stress responses remains unresolved. The nematode Caenorhabditis elegans expresses a GPM6A ortholog, the neuronal membrane glycoprotein 1 (NMGP-1). Because of the shared features between nematode and mammalian nervous systems and the vast genetic tools available in C. elegans, we used the worm to elucidate the role of GPM6A in the stress response. We first identified nmgp-1 expression in different amphid and phasmid neurons. To understand the nmgp-1 role, we characterized the behavior of nmgp-1(RNAi) animals and two nmgp-1 mutant alleles. Compared to control animals, mutant and RNAi-treated worms exhibited increased recovery time from the stress-resistant dauer stage, altered SDS chemosensation and reduced egg-laying rate resulting in egg retention (bag-of-worms phenotype). Silencing of nmgp-1 expression induced morphological abnormalities in the ASJ sensory neurons, partly responsible for dauer exit. These results indicate that nmgp-1 is required for neuronal morphology and for behaviors associated with chemosensation. Finally, we propose nmgp-1 mutants as a tool to screen drugs for human nervous system pathologies.

A model to evaluate interprofessional training effectiveness: feasibility and five-year outcomes of a multi-site prospective cohort study.

OBJECTIVES: Assessing the impact of interdisciplinary training programs is highly desirable and needed. However, there are currently no established methods to prospectively assess long-term outcomes of trainees compared to individuals who did not receive training. Our objective was to test the feasibility of a longitudinal, prospective cohort design to evaluate training outcomes, and to use this method to evaluate Leadership Education in Neurodevelopmental Disabilities and Related Disorders (LEND) training outcomes. METHODS: LEND trainees were matched to comparison peers and followed annually for up to five years using a pre-existing outcomes survey. We assessed study feasibility using recruitment and retention data over five years. We then looked at preliminary efficacy of LEND training in LEND trainees compared to comparison peers using the pre-existing outcomes survey. RESULTS: Overall, 68.3% of eligible trainees participated in the Outcomes Study across five years, and 66.0% were matched to comparison peers. On average, 84.4% of LEND trainees and 79.9% of comparison peers completed the outcomes survey annually. Attrition was low at 0.9% for LEND trainees and 2.6% for comparison peers over five years. LEND training demonstrated preliminary efficacy in promoting leadership development: LEND trainees began their careers engaged in more leadership activities than comparison peers, and the rate of growth in their participation in leadership activities was greater. CONCLUSIONS: The design used to assess outcomes is a feasible approach that can be widely used to assess training program outcomes. Analyses suggest that LEND training is efficacious in increasing involvement in leadership activities over time after graduation.

United States Medicaid home and community-based services for people with intellectual and developmental disabilities: A scoping review.

Emerging research tests the impact of United States Medicaid home and community-based (HCBS) waiver policy on outcomes for people with intellectual and developmental disabilities; however, this body of work has yet to be synthesized. We conducted a scoping review to establish what is known about the impact of Medicaid HCBS policy on the lives of people with intellectual and developmental disabilities. Seven studies met final inclusion criteria. Their findings contribute to preliminary evidence that Medicaid HCBS waivers provide economic benefit at the state and federal level, reduce unmet healthcare needs, increase the likelihood that parents will be able to continue working, and reduce racial disparities in access to care. Additional work should compare HCBS waiver programmes, and their causal pathways, as well as draw international comparisons to similar programming, to determine essential infrastructure needed for a successful HCBS programme.

Cortical suppression in human primary visual cortex predicts individual differences in illusory tilt perception.

Neural responses to visual stimuli are modulated by spatial and temporal context. For example, in primary visual cortex (V1), responses to an oriented target stimulus will be suppressed when embedded within an oriented surround stimulus. This suppression is orientation-specific, with the largest suppression observed when stimuli in the neuron's classical receptive field and surround are of similar orientation. In human psychological experiments, the tilt illusion and tilt aftereffect demonstrate an effect of context on perceived orientation of a target stimulus. Similar to the neurophysiological data, the strength of these effects is modulated by the orientation difference between the target stimulus and context. It has been hypothesized that the neural mechanism underlying both the tilt illusion and tilt aftereffect involves orientation-tuned inhibition in V1. However, to date there is no direct evidence linking human perception of these illusions with measurements of inhibition from human visual cortex. Here, we measured context-induced suppression of neural responses in human visual cortex using functional magnetic resonance imaging (fMRI). In the same participants, we also measured magnitudes of their tilt illusion and tilt aftereffect. Our data revealed a significant relationship between the magnitude of neural suppression in V1 and size of the tilt illusion and tilt aftereffect. That is, participants who showed stronger blood oxygenation level dependent (BOLD) suppression in V1 also perceived stronger shifts in illusory tilt. This agreement between perception and neural responses in human V1 suggests a shared inhibitory mechanism that mediates both spatial and temporal effects of context in human perception.

Implementing individualized medicine into the medical practice.

There is increasing recognition that genomic medicine as part of individualized medicine has a defined role in patient care. Rapid advances in technology and decreasing cost combine to bring genomic medicine closer to the clinical practice. There is also growing evidence that genomic-based medicine can advance patient outcomes, tailor therapy and decrease side effects. However the challenges to integrate genomics into the workflow involved in patient care remain vast, stalling assimilation of genomic medicine into mainstream medical practice. In this review we describe the approach taken by one institution to further individualize medicine by offering, executing and interpreting whole exome sequencing on a clinical basis through an enterprise-wide, standalone individualized medicine clinic. We present our experience designing and executing such an individualized medicine clinic, sharing lessons learned and describing early implementation outcomes.

Chronic Health Conditions Among Adults With Intellectual and Developmental Disabilities in a State Medicaid System.

Despite a growing number of adults with intellectual and developmental disabilities (IDD) and documented risk for adverse outcomes as they age, little is known about the health and healthcare patterns of adults with different IDD throughout adulthood. This study uses Wisconsin Medicaid claims data to characterize health conditions among adults with IDD. Results indicate high prevalence of asthma, diabetes, heart disease, and hypertension. Heart disease rates were particularly high, having been observed among 39% of autistic adults, 64% of autistic adults with intellectual disability (ID), 67% of adults with Down syndrome, and 75% of adults with ID only. Given there are no known biological differences underlying increased morbidities among most people with IDD, developing inclusive prevention measures should be prioritized in future research.

Psychological distress and mental health diagnoses in adults by disability and functional difficulty status: Findings from the 2021 national health interview survey.

BACKGROUND: Evidence suggests that disabled people have worse mental health than non-disabled people, but the degree to which disability contributes to mental health is unclear. OBJECTIVE: This paper uses 2021 National Health Interview Survey (NHIS) data to estimate the association between disability and depression and anxiety diagnoses as well as psychological distress among adults. METHODS: We calculated disability population prevalence and mental health diagnoses and associated symptoms among 28,534 NHIS respondents. Logistic regressions estimated the odds of depression or anxiety diagnoses and recent psychological distress, controlling for disability and mental health diagnoses. We measured disability using binary and continuum measures of functional disability with the Washington Group Short Set on Functioning. RESULTS: Disabled people have significantly greater odds of both depression and anxiety diagnoses compared to non-disabled people. Those with high functional disability have 552 % greater odds of an anxiety diagnosis (95 % CI: 5.61-7.58; p < 0.01) and 697 % greater odds of a depression diagnosis (95 % CI: 6.97-9.12; p < 0.01) compared to those with no functional disability. Similarly, those with any level of functional disability are more likely to have elevated psychological distress in the past 30 days compared to those with no functional disability. CONCLUSIONS: Findings support the idea that mental health is worse for disabled people compared to non-disabled people, with increasing functional disability associated with worse mental health. This suggests that mental health is not being adequately addressed for those with the greatest functional disability. Future work should seek to better understand the systemic causes of disparities.

Adverse Childhood Experiences and Health Outcomes Among Transition-Age Autistic Youth.

BACKGROUND: Adverse childhood experiences (ACEs) have been associated with poor health outcomes in the general population. However, their impact on autistic youth remains unclear. OBJECTIVE: The primary objective was to understand how childhood adversity is related to the general health, mental health, and physical health of transition-age autistic youth. PARTICIPANTS AND SETTING: Using data from the 2018-2021 National Survey of Children's Health, this cross-sectional study involved 2056 autistic youth aged 12-17. METHODS: Logistic regression was employed to test the association between three measures of ACEs - individual ACEs, cumulative ACEs, and grouped ACEs based on contexts, and health outcomes of autistic youth. RESULTS: Our study observed a high prevalence of ACEs among autistic youth, with a substantially higher proportion experiencing multiple ACEs than their neurotypical peers. Individual ACEs were significantly associated with specific health issues. Cumulative ACEs demonstrated a clear dose-response relationship with health outcomes, with higher ACE counts increasing the likelihood of experiencing poor general health, mental health conditions, and physical health issues. Moreover, grouped ACEs associated with health differently, with community-based ACEs being particularly linked to general health status, mental health conditions, and physical health conditions, while family-based ACEs correlated more with more severe mental health conditions and being overweight. CONCLUSION: These findings collectively emphasize the importance of addressing ACEs as a public health concern among transition-age autistic youth, highlighting the need for targeted interventions, prevention strategies, and support services to mitigate the negative impact of ACEs on the overall well-being of this growing community.

"I'm dealing with a health care system that doesn't get it": Barriers and facilitators to inclusive healthcare for autistic adults.

LAY ABSTRACT: Research has suggested that autistic adults may have a bigger chance of having mental health and physical health conditions such as depression, anxiety, sleep disorders, diabetes, obesity, and heart problems than adults without autism. Unfortunately, the unique healthcare needs of autistic adults are often overlooked, so it is not clear why autistic adults have worse health or what can be done to improve it. This study wants to find out the challenges autistic adults experience in taking care of their health and in going to different doctors. Researchers interviewed autistic adults across the country about their healthcare experiences. The interviewed autistic adults told the researchers about the barriers (things that did not help) and facilitators (things that did help) that impacted whether they received the care they needed. The researchers then organized what they learned from the autistic adults into a model called the Systems Engineering Initiative for Patient Safety model of work system and patient safety. This model explains how different parts of a healthcare system (person, tasks, technology and tools, environment, and organization) interact with one another and impact the healthcare experiences and outcomes of the patients in their care, like autistic adults. Overall, this study advocates for a systems-level approach to improving the healthcare experiences of autistic adults and their health outcomes.

Brief Report: Under-Identification of Symptomatic Menopause in Publicly-Insured Autistic People.

Menopause is a normal part of aging and in the general population is associated with chronic conditions that impact health, mortality, and well-being. Menopause is experienced differently by autistic individuals, although no studies have investigated this topic in a large sample. The purpose of this study was to investigate rates of, and factors associated with symptomatic menopause among autistic individuals and to identify the prevalence of co-occurring conditions in symptomatic individuals. We included autistic females aged 35-70 years enrolled for 10 + months in 2014-2016 Medicare and/or Medicaid (n = 26,904), excluding those with gender dysphoria. Those with symptomatic menopause were compared to a non-symptomatic reference group on demographic, enrollment characteristics, and co-occurring conditions through logistic regression. Approximately 4% of publicly-insured autistic females aged 46-70 years had symptomatic menopause in their medical records. Intellectual disability was associated with a lower likelihood of symptomatic menopause, and being Medicare-enrolled or dual-enrolled was associated with higher likelihood of having symptomatic menopause recorded. In adjusted models, rates of ADHD, anxiety and depressive disorders, headache/migraine, altered sensory experiences, altered sexual function, and sleep disturbance were significantly higher in the symptomatic menopause sample compared to the reference group. More work to better support autistic women in discussing menopausal symptoms and co-occurring conditions with primary care providers is needed, particularly among those for whom self-report of symptoms are more challenging to ascertain. Factors associated with specific types of health care coverage warrant greater investigation to support better identification.

Cardiovascular disease risk factors in autistic adults: The impact of sleep quality and antipsychotic medication use.

Approximately 40% of American adults are affected by cardiovascular disease (CVD) risk factors (e.g., high blood pressure, high cholesterol, diabetes, and overweight or obesity), and risk among autistic adults may be even higher. Mechanisms underlying the high prevalence of CVD risk factors in autistic people may include known correlates of CVD risk factors in other groups, including high levels of perceived stress, poor sleep quality, and antipsychotic medication use. A sample of 545 autistic adults without intellectual disability aged 18+ were recruited through the Simons Foundation Powering Autism Research, Research Match. Multiple linear regression models examined the association between key independent variables (self-reported perceived stress, sleep quality, and antipsychotic medication use) and CVD risk factors, controlling for demographic variables (age, sex assigned at birth, race, low-income status, autistic traits). Overall, 73.2% of autistic adults in our sample had an overweight/obesity classification, 45.3% had high cholesterol, 39.4% had high blood pressure, and 10.3% had diabetes. Older age, male sex assigned at birth, and poorer sleep quality were associated with a higher number of CVD risk factors. Using antipsychotic medications was associated with an increased likelihood of having diabetes. Poorer sleep quality was associated with an increased likelihood of having an overweight/obesity classification. Self-reported CVD risk factors are highly prevalent among autistic adults. Both improving sleep quality and closely monitoring CVD risk factors among autistic adults who use antipsychotic medications have the potential to reduce risk for CVD.

Decoding conjunctions of direction-of-motion and binocular disparity from human visual cortex.

Motion and binocular disparity are two features in our environment that share a common correspondence problem. Decades of psychophysical research dedicated to understanding stereopsis suggest that these features interact early in human visual processing to disambiguate depth. Single-unit recordings in the monkey also provide evidence for the joint encoding of motion and disparity across much of the dorsal visual stream. Here, we used functional MRI and multivariate pattern analysis to examine where in the human brain conjunctions of motion and disparity are encoded. Subjects sequentially viewed two stimuli that could be distinguished only by their conjunctions of motion and disparity. Specifically, each stimulus contained the same feature information (leftward and rightward motion and crossed and uncrossed disparity) but differed exclusively in the way these features were paired. Our results revealed that a linear classifier could accurately decode which stimulus a subject was viewing based on voxel activation patterns throughout the dorsal visual areas and as early as V2. This decoding success was conditional on some voxels being individually sensitive to the unique conjunctions comprising each stimulus, thus a classifier could not rely on independent information about motion and binocular disparity to distinguish these conjunctions. This study expands on evidence that disparity and motion interact at many levels of human visual processing, particularly within the dorsal stream. It also lends support to the idea that stereopsis is subserved by early mechanisms also tuned to direction of motion.

Investigating changes in quality of life and function along the lifespan for people with spinal cord injury.

OBJECTIVE: To track changes in quality of life and function for people with spinal cord injury (SCI) along the lifespan. DESIGN: A wave panel design in which data were collected annually over 5 years across 6 strata that represented different periods since injury. SETTING: Telephone interviews with participants in their home environment. PARTICIPANTS: People (n=270) who had sustained a traumatic SCI in Queensland, Australia, over the previous 60 years. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Quality of life was measured using the World Health Organization Quality of Life-8. Human functioning was measured in 3 components. Body structure/function was measured using the Secondary Conditions Surveillance Instrument. Activity was measured using the motor subscale of the FIM (mFIM) and the Clinical Outcomes Variables Scale. Participation was measured using the Community Integration Measure (CIM) and the Impact on Participation and Autonomy questionnaire. RESULTS: Quality of life remained relatively constant across the lifespan. For body structure/function, there was a significant increase in secondary conditions with time since injury. There was a significant decrease in activity as measured by the mFIM for higher functioning individuals. Participation, as measured by the CIM, showed a significant increase with time since injury, but not when adjusted for the American Spinal Injury Association Impairment Scale, income level, and living situation. CONCLUSIONS: The findings of this study highlight that people with SCI are able to maintain quality of life and participation along the lifespan; however, increases in secondary conditions and a decline in function over time are likely. Rehabilitation services could work more effectively at addressing secondary prevention through enhanced monitoring over time, while broader societal responses are likely to hold the key to optimizing human functioning.

Methods for Modulating and Measuring Neuromuscular Exertion in C. elegans.

The nematode C. elegans has been used widely to study the genetic and cellular basis of behavior. Yet the laboratory conditions under which it is typically studied offer only a narrow glimpse into the richness of natural behaviors this remarkable animal evolved over 500 million years of evolution. For example, burrowing behavior naturally occurs in the wild, but it remains understudied. Our group studies burrowing in an attempt to expand our understanding of the natural behavioral repertoire of C. elegans. Aside from being an interesting and tractable behavior, burrowing is experimentally useful and permits the titration of the muscular output exerted by C. elegans. Here we describe several burrowing assays that allow the modulation of muscular exertion. We used these to study both adaptive and pathological muscular processes such as muscle hypertrophy and dystrophy, respectively. We believe these assays will be of use for researchers studying the production of locomotion under normal and disease-challenged conditions.

The Impact of Sleep Quality on Quality of Life for Autistic Adults.

BACKGROUND: Although research demonstrates that autistic children are at risk of poor sleep quality, very little is known about sleep quality and its impact on quality of life in autistic adults. We investigated the relationships between sleep quality, perceived stress, and quality of life for autistic adults. METHOD: Data were prospectively collected from both autistic adults (N=40) and non-autistic adults (N=24). Sleep Quality was measured using the Pittsburgh Sleep Quality Index, Perceived Stress was measured using the Perceived Stress Scale, and Quality of Life was measured using the Brief Version of the World Health Organization Quality of Life Scale. We ran OLS regression models to examine the association between study group, perceived stress, sleep quality, and quality of life. We tested for main effects of study group (i.e., autistic or non-autistic), sleep quality, and perceived stress, adjusting for demographic characteristics. Then, we tested the interaction between study group and sleep quality. Finally, we tested a three-way interaction between group, sleep quality, and perceived stress. RESULTS: Autistic adults reported worse sleep quality compared to non-autistic adults. Poorer sleep quality was significantly associated with lower quality of life for all participants in the study. Findings from the three-way interaction indicated that higher perceived stress further exacerbated the relationship between poorer sleep quality and lower quality of life for autistic adults. CONCLUSIONS: These findings suggest that interventions that target both sleep quality and stress could effectively improve quality of life for autistic adults.

Epilepsy in adulthood: Prevalence, incidence, and associated antiepileptic drug use in autistic adults in a state Medicaid system.

LAY ABSTRACT: Epilepsy is more common in autistic children compared to children without autism, but we do not have good estimates of how many autistic adults have epilepsy. We used data from a full population of 7513 autistic adults who received Medicaid in Wisconsin to figure out the proportion of autistic adults who have epilepsy, as compared to 18,429 adults with intellectual disability. We also wanted to assess how often epilepsy is first diagnosed in adulthood. Finally, we wanted to see whether antiepileptic drugs are being used to treat epilepsy in autistic adults. We found that 34.6% of autistic adults with intellectual disability and 11.1% of autistic adults without intellectual disability had epilepsy, compared to 27.0% of adults with intellectual disability alone. Autistic women and autistic adults with intellectual disability were more likely than autistic men and autistic adults without intellectual disability to have both previous and new diagnoses of epilepsy. Finally, we found that antiepileptic medications are commonly prescribed to autistic people who do not have epilepsy potentially to treat mental health conditions or behavior problems, and that antiepileptic medications are not always prescribed to autistic people with epilepsy even though they are indicated as a first-line epilepsy treatment. The findings of this study highlight the need to effectively treat and prevent epilepsy in autistic adults.

Prioritised research agenda for prevention and control of chronic respiratory diseases.

The 2008-2013 World Health Organization (WHO) action plan on noncommunicable diseases (NCDs) includes chronic respiratory diseases as one of its four priorities. Major chronic respiratory diseases (CRDs) include asthma and rhinitis, chronic obstructive pulmonary disease, occupational lung diseases, sleep-disordered breathing, pulmonary hypertension, bronchiectiasis and pulmonary interstitial diseases. A billion people suffer from chronic respiratory diseases, the majority being in developing countries. CRDs have major adverse effects on the life and disability of patients. Effective intervention plans can prevent and control CRDs, thus reducing morbidity and mortality. A prioritised research agenda should encapsulate all of these considerations in the frame of the global fight against NCDs. This requires both CRD-targeted interventions and transverse NCD programmes which include CRDs, with emphasis on health promotion and disease prevention.

Examining motion speed processing in schizophrenia using the flash lag illusion.

Research on visual perception in schizophrenia suggests a deficit in motion processing. Specifically, difficulties with discriminating motion speed are commonly reported. However, speed discrimination tasks typically require participants to make judgments about the difference between two stimuli in a two-interval forced choice (2IFC) task. Such tasks not only tap into speed processing mechanisms, but also rely on higher executive functioning including working memory and attention which has been shown to be compromised in schizophrenia. We used the Flash Lag illusion to examine speed processing in patients with schizophrenia. Based on previous research showing a strong dependence between motion speed and the illusion magnitude, we expected a deficit in speed processing to alter this relationship. A motion processing deficit in patients would also predict overall reductions in perceived lag. We found the magnitude and speed dependence of the Flash Lag illusion to be similar in patients and controls. Together, the findings suggest no general abnormality in motion speed processing in schizophrenia.