Preliminary Pilot-Testing of Social Determinants of Health Screener for Individuals With Intellectual and Developmental Disabilities in Med-Peds.

In the United States, one in six children has an intellectual and/or developmental disability (I/DD), including attention deficit hyperactivity disorder (ADHD), autism, cerebral palsy, learning disabilities, seizures, and developmental delays, with or without intellectual impairment. Individuals with I/DDs experience disproportionate rates of immune, metabolic, cardiovascular, and neurological disorders, as well as anxiety, depression, functional somatic symptoms, and other co-occurring physical and mental health conditions. During the coronavirus disease 2019 (COVID-19) pandemic, having an I/DD emerged as one of the strongest predictors of contracting and dying from COVID-19. These findings spurred increased attention toward the myriad health inequities affecting this population well before the pandemic. While inequities for individuals with I/DD can be traced to many factors, social determinants of health (SDOH) - the underlying social, economic, and environmental conditions that lead to poor health outcomes and high healthcare costs - are key contributors. Our interdisciplinary combined internal medicine and pediatrics (Med-Peds) team of physicians, psychologists, and researchers within a large, diverse, academic health system aimed to pilot-test the implementation of a five-item SDOH screener within a Med-Peds specialty clinic focused on the developmental needs of individuals with I/DD and their families (Leadership Education in Neurodevelopmental Disabilities {LEND}) and a general primary care practice (PCP). The SDOH screener tested in this initiative includes five items from the Accountable Health Communities (AHC) Health-Related Social Needs Screening Tool (HRSN) assessing social isolation, food insecurity, transportation, and paying for basic needs, such as housing and medical care. In this study, we describe the process of implementing this screener and collecting initial pilot data from 747 patients between October 2022 and April 2023 across the LEND and the primary care practice. We also highlight the challenges and opportunities identified during the mid-way point of implementation and pilot testing. The results of this pilot study revealed low response rates among SDOH screeners, spurring several measures to increase uptake, including increasing the accessibility of the screener and ensuring the screener results in effective referrals. We call on additional Med-Peds healthcare teams without universal SDOH screening protocols in place - particularly those serving the I/DD population - to consider adopting these practices.

Teaching virtual job interview skills to college students with IDD using literacy-based behavioral interventions

College students with intellectual and developmental disabilities (IDD) face challenges searching for jobs, often lacking communication and social skills needed during formal interviews. The COVID-19 pandemic complicates interviews, forcing students to search online and attend virtual interviews. This study used a multiple probe design across participants to examine the acquisition of literacy-based behavioral interventions (LBBIs) on virtual job interviews. Using a video conference platform, students answered interview questions from researchers acting as employers. LBBIs were customized, incorporating students' input. Results indicated that LBBIs were effective for teaching and maintaining virtual job interview skills, and across novel employers. The findings have implications for using LBBIs to teach virtual job interview skills to students with IDD, and for researchers including these students in remote instruction. (PsycInfo Database Record (c) 2023 APA, all rights reserved)

"Can you hear me now?": a qualitative exploration of communication quality in virtual primary care encounters for patients with intellectual and developmental disabilities.

BACKGROUND: High quality communication is central to effective primary care. The COVID-19 pandemic led to a dramatic increase in virtual care but little is known about how this may affect communication quality. Adults with intellectual and developmental disabilities (IDD) can experience challenges communicating or communicate in non-traditional ways. This study explored how the use of virtual modalities, including telephone and video, affects communication in primary care interactions for patients with IDD. METHODS: This qualitative descriptive study included semi-structured interviews with a multi-stakeholder sample of 38 participants, including 11 adults with IDD, 13 family caregivers, 5 IDD support staff and 9 primary care physicians. Interviews were conducted in Ontario, Canada between March and November 2021 by video-conference or telephone. A mixed inductive and deductive thematic analysis approach was used to code the data and identify themes. Themes were reviewed and refined with members of each stakeholder group. RESULTS: Four elements of communication were identified that were affected by virtual care: (1) patient engagement in the virtual appointment; (2) the ability to hear other participants and have the time and space to be heard; (3) the ability to use nonverbal communication strategies; and (4) the ability to form trusting relationships. In some cases, the virtual platform hindered these elements of communication. Video offered some advantages over telephone to support nonverbal communication, and stimulate engagement; though this could be limited by technical challenges. For adults with IDD who find it difficult to attend in-person appointments, virtual care improved communication quality by allowing them to participate from a space where they were comfortable. CONCLUSION: Though there are circumstances in which virtual delivery can improve communication for patients with IDD, there are also challenges to achieving high quality patient-provider communication over telephone and video. Improved infrastructure and training for providers, patients and caregivers can help improve communication quality, though in some cases it may never be appropriate. A flexible patient-centred approach is needed that includes in-person, telephone and video options for care.

COVID-19-Related Facilitators and Barriers to In-Person Learning for Children With Intellectual and Development Disabilities.

BACKGROUND: Schools provide essential functions for children with intellectual and developmental disabilities (IDD), but their vulnerability to infection with SARS-CoV-2 are a barrier to in-person learning. This qualitative study aimed to understand how weekly SARS-CoV-2 screening testing of students and staff could best facilitate in-school learning during the pandemic. METHODS: Thirty-one focus groups were held with school staff and parents of children with IDD to examine the perceptions of COVID-19 during the 2020-2021 school year. Responses were analyzed using a directed thematic content analysis approach. RESULTS: Five principal themes were identified: risks of returning to in-person learning; facilitators and barriers to participation in SARS-CoV-2 screening testing; messaging strategies; and preferred messengers. IMPLICATIONS FOR SCHOOL HEALTH POLICY, PRACTICE, AND EQUITY: Staff and families agreed that saliva-based SARS-CoV-2 screening testing helps increase comfort with in-person learning. Screening testing increased family and school staff comfort with in-person learning particularly because many students with special needs cannot adhere to public health guidelines. CONCLUSION: To keep children with IDD in school during the pandemic, families found SARS-CoV-2 screening testing important, particularly for students that cannot adhere to mitigation guidelines.

The Role of Information and Knowledge in COVID-19 Vaccination Among People With Intellectual and Developmental Disabilities and Their Families.

People with intellectual and developmental disabilities (IDD) may be at an increased risk of severe illness and death from COVID-19. This article examines the role of information and knowledge in COVID-19 vaccine uptake for people with IDD and their families. We developed a survey about COVID-19 vaccine uptake, confidence, and knowledge for people with IDD and their families. COVID-19 vaccine uptake was associated with higher self-reported knowledge about the vaccine, learning about the vaccine from one's doctor, and social media use. Qualitative results reflected the importance of trusted relationships with medical providers in vaccination.

Impact of COVID-19 pandemic and lockdown on physical, psychological, and social well-being of persons with disabilities: A systematic review

Knowing that coronavirus disease 2019 (COVID-19) pandemic and the resultant lockdowns severely curtailed the mobility and accessibility to healthcare services for people with disability (PWD);the objective was to explore the impact and challenges faced by different disabling conditions among PWDs. A systematic review was conducted using online databases on impact or effect of COVID-19 on people with disabilities. Forty-three articles were included. Studies on different disability conditions reported reduced access to healthcare and rehabilitative services due to lockdown during the pandemic. There was reduction in physical activity;increased behavioral problems;poor compliance to preventive measures;and they experience anxiety, fear, depression, stress, loneliness, social isolation, and financial crisis. Their families and caregivers also experienced adverse emotional, economic, and social consequences of the pandemic. The study highlights need for mass sensitization, mobilization of services and creating awareness for adaptation and implementation of comprehensive disability inclusive guidelines. © 2022 Medical Journal of Dr. D.Y. Patil Vidyapeeth ;Published by Wolters Kluwer - Medknow.

A Report on the Increased Payment Rates for HCBS for People with Intellectual and Developmental Disabilities During the COVID-19 Pandemic.

Recognizing the crisis the COVID-19 pandemic represents to the Home- and Community-Based Services (HCBS) service system and the health, safety, and quality of life of people with intellectual and developmental disabilities (IDD), states temporarily amended their HCBS programs to strengthen service delivery. States are able to temporarily amend their HCBS 1915(c) waiver programs by submitting Appendix K: Emergency Preparedness and Response Waivers to the Centers for Medicare and Medicaid Services (CMS). The aim of this study was to examine if, and how, states increased their reimbursement rates for HCBS IDD waiver services during the COVID-19 pandemic. To do so, we analyzed 294 Appendix Ks which amended HCBS 1915(c) waivers for people with IDD between the start of the pandemic and April 2022. During the pandemic, 34 states and the District of Columbia increased reimbursement rates for 2,435 services provided by 82 HCBS waivers for people with IDD. Increase in reimbursement rates ranged from 3.5% to 160.7%, with an average increase of 23.3%. States most frequently increased reimbursement for supports to live in one's own home, residential habilitation, and health and professional services. In addition, 12 states and the District of Columbia offered one-time supplemental payments through 25 HCBS waivers for people with IDD. While increasing payments during the pandemic likely helped stabilize the HCBS service system during this period of crisis, what remains to be seen is how the IDD service system will function when this additional funding is discontinued.

The Impact of Emergency Pandemic HCBS Funding on the Continuity and Security of People with Intellectual and Developmental Disabilities.

This study's aim was to examine the impact of pandemic emergency Home- and Community-Based Services (HCBS) payments on the continuity and security of people with intellectual and developmental disabilities (IDD). Using a multilevel logistic regression, we analyzed secondary Personal Outcome Measures interviews from 738 people with IDD (March 2020 through April 2022), and state pandemic emergency HCBS payment data from 16 states. The odds of people with IDD experiencing continuity and security during the pandemic increased by 3% for every 1% states increased their payment rates, and by 398% when states offered retainer payments. Increased reimbursement rates and retainer payments can help providers maintain operations and promote the continuity and security of people with IDD.

Preliminary Results of an Interdisciplinary Behavioral Program to Improve Access to Preventative Dental Care for Adults With Intellectual and Developmental Disabilities.

Adults with intellectual and developmental disabilities (AIDD) experience significant oral health disparities, partially due to perceived behavioral issues. This article describes the preliminary outcomes of a developing interdisciplinary (dental, medical, behavioral) program involving a behavioral intervention for AIDD previously receiving preventative dental care with sedation, general anesthesia, or protective stabilization (SAS). After a baseline assessment, a board-certified behavior analyst implemented increasingly complex behavioral interventions during simulated dental visits. Prior to COVID-19 pandemic-related restrictions, there were 32 active participants; 15 (46.9%) successfully completed a focused, real dental exam with simple behavioral interventions and 17 (53.1%) remain in treatment. These preliminary results suggest that many AIDD previously receiving SAS may participate in a preventative dental exam with minimal behavioral supports, if given the opportunity.

COVID-19 infection differences among people with disabilities.

Purpose: People with disabilities may be at higher risk for COVID-19 infection and death as a result of their impairments and/or medical conditions, and systemic inequities and disadvantages. People with disabilities are also a very heterogenous group, with many people with disabilities being multiply marginalized. The aim of this study was to examine differences in COVID-19 diagnosis and vaccination between people with and without disabilities, and to explore sociodemographic differences in COVID-19 diagnosis and vaccination among the disability community itself. Methods: To do so, we analyzed secondary United States Census Bureau data from 444,422 people (52,890 adults with disabilities and 391,532 adults without disabilities) about COVID-19 diagnosis, vaccination, and sociodemographics. Frequency person-weights were applied. Results: In this study, 19.3% of adults with disabilities were diagnosed with COVID-19 during the pandemic compared to 16.7% of adults without disabilities. People with disabilities were 1.20 times more likely to be diagnosed with COVID-19 than adults without disabilities. Among people with disabilities, the following groups were more likely to be diagnosed with COVID-19: people with cognitive disabilities; cisgender women; Black people; Hispanic people; people with some college or associate's degrees; people with employer and/or private insurance; and people who lived in larger households. There was not a significant difference in vaccination between people with and without disabilities; however, there were vaccination disparities among the disability community. Conclusions: Many of the people with disabilities who were more likely to face health care disparities prior to the pandemic were also more likely to be diagnosed with COVID-19 during the pandemic.

Brief Report: A Pilot Investigation of Safety Concerns Among Direct Service Providers for Adults with Intellectual and Developmental Disabilities.

We designed and distributed a survey that assessed safety concerns experienced by direct service providers (DSPs) (N = 59) of adults with intellectual and developmental disabilities (IDD) in community-based group homes at a single human services organization. Results indicated relatively few safety concerns among the respondents from a list of 25 survey statements. Possible influences on the findings are presented such as safety training of the DSPs, comprehensive safety guidelines in place at the group homes, and conditions occasioned by the COVID-19 pandemic. Current safety research in IDD supports the necessity of assessment to inform prevention and intervention strategies.

Tips for health care providers on talking with patients who have intellectual and developmental disabilities about COVID-19.

BACKGROUND: One in four American adults reports having at least one disability. The COVID-19 pandemic has disproportionately impacted people with disabilities and widened already-existing health disparities and inequities. For many people with intellectual and developmental disabilities (IDD), these disparities are compounded by literacy limitations that make it challenging to access, understand, and act upon critical COVID-19 prevention information. METHODS: Using a design thinking framework, we conducted interviews with 27 caregivers of adults with IDD who also have extreme low literacy (ELL) to assess COVID-19 information needs and recommendations for how health care providers could best provide COVID-19 information. Based on our findings, we developed a draft tip sheet to help health care providers communicate with adults with IDD/ELL about COVID-19. We then tested the tip sheet with six health care providers via a focus group discussion. We refined and finalized the tip sheet based on our focus group findings. RESULTS: Caregivers noted the importance of visual aids, repetition, empathy and addressing the person with IDD/ELL directly when discussing COVID-19. Many health care providers indicated that the tip sheet would be most helpful for those with limited experience with patients with IDD/ELL and specific instructions for implementing the tips would be important. CONCLUSIONS: We developed an evidence-informed tip sheet to facilitate communication between health care providers and adults with IDD/ELL and their caregivers, particularly around COVID-19.

Using synchronous reinforcement to increase mask wearing in adults with intellectual and developmental disabilities.

In 2020 the Centers for Disease Control provided the public with recommendations to slow the spread of COVID-19 by wearing a mask in the community. In the current study, experimenters coached group home staff via telehealth to implement synchronous schedules of reinforcement to increase mask wearing for 5 adults with intellectual and developmental disabilities. Results showed the intervention effectively increased mask wearing for all participants for up to 30 min. Additionally, some participants for whom we assessed generalization of mask wearing demonstrated generalization to various community environments. Furthermore, procedural integrity data suggested staff could be coached via telehealth to implement the intervention, and staff surveys suggested the procedures and coaching were socially valid.

Mental health and COVID-19: The impact of a virtual course for family caregivers of adults with intellectual and developmental disabilities.

BACKGROUND: The COVID-19 pandemic has significantly impacted family caregivers of adults with intellectual and developmental disabilities (IDD). This study evaluated a virtual course for family caregivers from across Canada, focused on supporting the mental health and well-being of adults with IDD and their families. The evaluation examined the feasibility and acceptability of the course, as well as the impact of the intervention on participants' overall health and well-being. METHODS: The 6-week virtual course, informed by a parallel Extension for Community Healthcare Outcomes (ECHO) course for service providers, combined didactic instruction with applied activities. A total of 126 family caregiver course participants consented to be part of the research evaluation delivered over three cycles between October 2020 and April 2021. Attendance was measured at each weekly session. Satisfaction was assessed weekly and post-program. Learning, self-efficacy, and well-being were assessed pre- and post-course, and again at follow-up (8 weeks post-course). Mixed-effects models assessed changes between and within individuals across time. RESULTS: Participants had consistent attendance, low-dropout rates, and reported high satisfaction, with 93% of participants reporting that their expectations for the course were met. Compared with pre-course, participants reported improved self-efficacy and well-being post-course, which were maintained at follow-up. CONCLUSIONS: An interactive and applied virtual education course delivered to a large group of family caregivers of adults with IDD was both feasible and acceptable. It positively impacted participants' well-being by offering much needed mental health support and creating a peer-led community of practice.

Social work response needed to the challenge of COVID-19 for aging people with intellectual and developmental disabilties

This reprinted chapter originally appeared in Journal of Gerontological Social Work, 2020, 63[6-7], 595-597. (The following of the original article appeared in record 2021-00510-011.) The COVID-19 pandemic affects all of us, but consequences are more serious for those who are older or have chronic conditions and immune disorders. Places where numbers of people are living together, such as in nursing homes, have also proven to be particularly vulnerable. People with intellectual and developmental disabilities (I/DD) frequently present with the same risk factors but are largely forgotten in the care, response, and policy discussion. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Pandemic Stress and Coping in Adults with Intellectual and Developmental Disabilities in Urban Los Angeles: A Qualitative Interview Study

Background Method Results Conclusions People with intellectual and developmental disabilities (IDD) from low income diverse communities are experiencing the health impacts of the COVID-19 pandemic most acutely.To better understand the impacts of the pandemic on the wellbeing of adults with IDD from an urban US region and how they are managing the associated disruptions, in-depth qualitative interviews were conducted with 14 participants. A modified grounded theory approach was used to analyze data.Participants experienced stress in response to pandemic media reports and attempted to cope by sanitizing and wearing masks. These did little to reduce stress and may have added to frustration with non-compliers. Social distancing limited access to family, leading to isolation. Participants who engaged in spiritual practices, physical fitness and creative activities were more successful in coping.People with IDD may benefit from mindfulness practices or developing creative hobbies to be better equipped to cope. [ FROM AUTHOR] Copyright of Journal of Mental Health Research in Intellectual Disabilities is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)

Impact of COVID-19 on people with intellectual and developmental disabilities, their families,support professionals and organizations

Our world has been transformed by the coronavirus and the infection it causes. The severity of the disease and the consequences of the state of alarm do not affect everyone equally, being people with intellectual and developmental disabilities one of the most vulnerable groups. INICO and Plena inclusion conducted a study to analyze the impact of COVID-19 and lockdown on people with intellectual and developmental disabilities, their families, direct support professionals, and disability organizations. To address this goal, four online surveys were developed and completed by almost 1.500 participants from all the Spanish regions. The results indicate that, despite the efforts made by the third sector, the health crisis has unveiled the deficiencies of our support system, which leads us to reflect on three fundamental aspects: the degree to which the development and maintenance of natural support networks is carried out when the person lives in a specific environment;the extent to which the support offered from the third sector reaches individuals outside the disability services network;and the role of our educational system in guaranteeing the right to education for people with special support needs. © 2021 University of Salamanca. All rights reserved.

Changes in community and hospital-based health care use during the COVID-19 pandemic for adults with and without intellectual and developmental disabilities.

BACKGROUND: Due to the functional, cognitive and communication impairments associated with intellectual and/or developmental disabilities (IDD), adaptations to service delivery during the COVID-19 pandemic may impact people with IDD differently than others. For community and hospital-based services, this study describes the proportion of adults with and without IDD who used health care in the year pre-COVID-19 and the first year of the pandemic. METHODS: This retrospective cohort study used linked health administrative databases to identify adults aged 18-105 years with and without IDD using unique encoded identifiers. Counts and proportions of adults who used health care services were reported for the pre-COVID-19 year (16 March 2019 to 14 March 2020) and the first COVID-19 year (15 March 2020 to 15 March 2021). RESULTS: Across services, the proportion of adults who used services was lower during the first COVID-19 year compared with the year prior, except for virtual physician visits that increased markedly for people with and without IDD. While the proportion of adults who used services was higher for those with IDD compared with those without IDD for both years, differences were greatest for mental health emergency visits and hospitalisations; adults with IDD were 6.3 to 10.9 times more likely to use these services than others with no IDD during the pandemic. CONCLUSIONS: During the first COVID-19 year in Ontario, Canada, service use decreased for all service types, except for virtual physician visits. In both years, adults with IDD remained more likely to use services than other adults, with the largest differences in use of mental health hospitalisations and mental health emergency department visits.

Self-advocate perspectives on COVID-19 in Urban Los Angeles: impacts on autonomy and access to supports

Background Method Results Conclusions Adults with disabilities in low-income communities of colour are disproportionately affected by the COVID-19 pandemic.We interviewed 14 self-advocates with intellectual and developmental disabilities (IDD) to learn more about their experiences during the peak of infections, hospitalisations, and deaths in Los Angeles, between December 2020 and March 2021.A modified grounded theory analysis revealed major themes of family, making choices & going places, formal services, and employment, which are discussed in relation to the participants' sense of autonomy and access to goods and services.Implications for practice include increased access and training for adults with IDD in computer skills to maintain social engagement with video conferencing, and to utilise grocery delivery services. [ FROM AUTHOR] Copyright of Journal of Intellectual & Developmental Disability is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)

Impact of COVID-19 on the burden of care of families of people with intellectual and developmental disabilities.

AIM: This study analysed the impact that COVID-19 and the response measures implemented by the Spanish Government have had on families of individuals with intellectual and developmental disabilities. METHOD: Data on 323 family members (M = 52.3 years old; SD = 10.5) were collected through an online survey, which was focused on analysing difficulties experienced and service provision during lockdown. RESULTS: Many families (66.3%) have seen their level of stress increased during lockdown because of, among other reasons, a greater burden of care. Difficulties were associated with the closure and changes in disability-related services. Families of people with extensive support needs have generally experienced greater difficulties. CONCLUSION: Support services should have been considered essential services during lockdown. The failure to receive support has resulted in excessive burden on families, who had to assume a multitude of roles to support their family member with intellectual and developmental disability.