Coronavirus Resources from the NIDILRR Grantee Community

jchaiken - Wed, 04/08/2020 - 13:11

Updated August 3rd, 2020

Many members of the NIDILRR grantee community have responded to the coronavirus pandemic by publishing, presenting, or curating resources to support the continued independence and participation of people with disabilities and their families, and the professionals who work with them. We are actively collecting these resources as they are published. This list is growing every week, so check back regularly.

NEW: Americans with Disabilities Act Participation Action Research Consortium (ADA PARC)

People with Disabilities in COVID-19: Fixing Our Priorities. Published in the American Journal of Bioethics specially issue on COVID-19. From the introduction: “While the COVID-19 pandemic has wreaked disproportionate havoc in marginalized racial/ethnic communities, little attention has been given to people with disabilities in the press, public health surveillance, and research. A few articles, including this special issue, consider the discriminatory nature of categorical exclusion from and guidelines for the rationing of medical equipment and services. While important, this focus captures only one—late-stage—injustice toward people with disabilities in the pandemic, and leaves untouched other important periods. We focus on these understudied periods. First, we describe the most relevant and unique disadvantages that people with disabilities experience in health care and community living that place them at greater risk for disparate COVID-19 outcomes. Then we highlight the need to ensure accurate data collection in order to better understand COVID-19 disparities and improve prevention and treatment of, and preparedness for, current and future infectious disease pandemics among people with disabilities.” Keywords: Ethics, disparities, data collection

NEW: Center for Research, Training, and Dissemination of Family Support for People with Disabilities Across the Life Course.

This center conducted a survey of caregivers and non-caregivers to understand the impact of the pandemic. The survey found that family caregivers reported more negative effects from the pandemic than non-caregivers. They were more likely to be experiencing isolation, food insecurity, and financial hardship, among other issues. Family caregivers also reported that the pandemic had increased their caregiving responsibilities, and that providing care was more emotionally, physically, and economially difficult. Female caregivers, minority caregivers, caregivers with less education, caregivers with lower income, younger caregivers, caregivers who care for persons with mental health/behavioral issues, and caregivers who live with the care recipient tended to report greater negative impacts. The report is available in an executive summary, a full report, and an infographic. Keywords: Caregiving, family caregivers, social isolation, financial impact

NEW: The Center for Enhancing Neurocognitive Health, Abilities, Networks, & Community Engagement (ENHANCE)

When Going Digital Becomes a Necessity: Ensuring Older Adults’ Needs for Information, Services, and Social Inclusion During COVID-19, published in the Journal of Aging and Social Policy. Examines information services and social services to connect older adults to community.
Keywords: older adults, social isolation, information technology

NEW: National Research Center for Parents with Disabilities and Their Families

NRCPD collected blog entries from parents with disabilities about their experiences during various phases of the pandemic in their communities.

NEW: Community Life Engagement Guidepost Fidelity Scale Development and Testing

Virtual Community Life Engagement. This publication applies the Four Guideposts to Community Life Engagement to selecting and supporting online engagement opportunities for people with intellectual and developmental disabilities https://covid19.communityinclusion.org/pdf/CLE_issue10_V2_D2.pdfThis publication was supported in part by a NIDILRR Field Initiated Research Grant (Community Life Engagement Guidepost Fidelity Scale Development and Testing; # 90IFRE0025) Part of https://covid19.communityinclusion.org/

Keywords: Community living, intellectual and developmental disabilities

NEW: Langston University Rehabilitation Research and Training Center (LU-RRTC)

The LU-RRTC has released a Policy Research Brief (volume 3, issue 1) titled Forecasting COVID-19 Issues for People of Color with Disabilities While Advancing the Minority-Serving Institution Research Capacity Building Science: A Framework for Federal Agencies. The brief reports on key themes derived from a national listening session titled “Emerging Issues Around COVID-19 and People of Color with Disabilities for Minority-Serving Institution Scientific Workforce Capacity Building”. The report documents potentially useful actionable strategies and proposes a Framework for Advancing the COVID-19 Science Involving People of Color with Disabilities through Minority-Serving Institution Research Capacity Building. 

Keywords: Capacity building

NEW: Learning and Working During the Transition to Adulthood (Transitions ACR)

The Transitions ACR  Young Adult Blog, Managing My Medical and Mental Health Conditions Amidst COVID-19. The blog post, written by a young adult with mental health conditions, discusses how the pandemic has affected the healthcare system and how this has affected the treatment of their medical and mental health conditions. Plus three tip sheets: How Young Adults Can Manage Loss of Income During the COVID-19 Pandemic covers many topics related to surviving this difficult financial situation and is applicable to everyone. Maintaining Your Emotional Wellness During COVID-19 is also available in ASL. And finally Coronavirus Economic Stimulus Payments: Who Gets It, How, & Impact on Other Benefits.

Keywords: Youth, young adults, wellness, employment, financial management

NEW: Great Lakes ADA Regional Center

This center aired a webinar in its ADA-Audio series on Face Coverings and the ADA https://www.accessibilityonline.org/ADA-Audio/session/?id=110851

Keywords: ADA, public health, masks, public policies, reasonable accommodations

AbleData

The AbleData team has a blog series called AT for Being at Home published through their Facebook page. Each article highlights different assistive technology (AT) solutions for at-home activities. Topics include gardening, working out, sewing, and gaming, with more topics in the pipeline. https://t.co/QyqYvh9fUp

Keywords: Assistive technology

ADA National Network of Regional Centers

The ADA National Network and its 10 regional centers help people with disabilities, employers, and public entities to understand their rights and responsibilities under the Americans with Disabilities Act (ADA). The regional centers are operating, though their physical offices may be closed due to stay-at-home orders. Call 800/949-4232 to reach the center for your region. The National Network and the centers hosted a Twitter chat (4/22) on ADA, Healthcare, and Effective Communication. Some of the centers have published resource pages.

Keywords: ADA, accessibility, healthcare, barriers, civil rights, effective communication, rural health, telehealth, mental health

Great Lakes ADA Regional Center

Great Plains ADA Regional Center

Coronavirus general, local, and national resources https://www.gpadacenter.org/updates/coronavirus-covid-19-resources

New England ADA Regional Center 

resources on COVID-19 and the Americans with Disabilities Act (ADA) from the NIDILRR-community, government agencies, and others. The resources cover a variety of topics related to COVID-19 and the ADA, such as ensuring the civil rights of people with disabilities during the pandemic, FAQs that address common issues related to Title III of the ADA, pandemic preparedness in the workplace and the ADA, and more.

Northeast ADA Regional Center

Northwest ADA Regional Center Coronavirus

Rocky Mountain ADA Regional Center

Southeast ADA Regional Center

Boston-Harvard Burn Injury Model System Center (BH-BIMS)

The researchers at the BH-BIMS published a letter to the editor in the journal Burns, COVID-19 pandemic and the burn survivor community: A call for action. The letter to the editor highlights the impact of the coronavirus pandemic (COVID-19) on people with burn injury, including reduced access to inpatient and outpatient medical and therapeutic care, loss of peer support leading to increased isolation, and triggers for post-traumatic stress disorder. The authors also suggest resources for support and education for burn survivors and care providers. The article is available free in full text.

The Center for Enhancing Neurocognitive Health, Abilities, Networks, & Community Engagement (ENHANCE).

The goal of the ENHANCE project is to support the ability of older adults with cognitive disabilities to live independently in the community. This center has published an article, When Going Digital Becomes a Necessity: Ensuring Older Adults’ Needs for Information, Services, and Social Inclusion During COVID-19, in the Journal of Aging & Social Policy. The article examines the immediate need for digital literacy for older adults who must suddenly learn to interact with health care providers, social services, and friends and family.

Collaborative on Health Reform and Independent Living (CHRIL)

CHRIL and its stakeholder partner American Association on Health and Disability (AAHD) collaborated on a series of short videos on COVID-19 and Disability:

Cognitopia

Cognitopia has developed several NIDILRR-funded technology solutions for people with cognitive and processing disorders such as brain injury and autism. Cognitopia added a collection of COVID-19 resources to the Staying Healthy portfolio in My Life. It’s designed to provide cognitively accessible information related to the coronavirus, including reliable links, instructional videos, personal care routines, and collected other info to help folks get through a difficult time. Cognitopia’s MyLife tool can be used remotely by a student and their support team as they transition from school to college or work. See a set-up example using Jon Student and his transition goals and activities.
Keywords: Cognitive disabilities, community participation, personal care

Community Living Policy Center

This center conducts research in policies and practices that promote community living outcomes for individuals with disabilities. In response to pending legislation which could impact services and supports for people with disabilities, the center published two briefs:

Keywords: Home and Community-Based Services (HCBS), direct support providers, policy, legislation

Model Systems Knowledge Translation Center (MSKTC)

MSKTC works with the Spinal Cord Injury, Traumatic Brain Injury, and Burn Injury Model System Centers, developing and curating resources to help people with these injuries, their families and caregivers, and rehabilitation professionals. In this special issue of their monthly newsletter, MSKTC shares resources to help individuals stay healthy during the coronavirus/COVID-19 pandemic.
Keywords: Spinal cord injury, traumatic brain injury, burn injury, health and wellness

Mount Sinai Spinal Cord Injury Model System

This center conducts research and development to help people with spinal cord injury (SCI) recover and return to their communities. Principal Investigator Thomas Bryce, MD, answered Frequently Asked Questions about COVID-19 and SCI for United Spinal. Topics covered included risk of contracting the virus, the impact on respiratory function, and when to consider going to the emergency department.
Keywords: Spinal cord injury, risk factors

National Research Center on Parents with Disabilities and Their Families

This center conducts research and training to support parents with disabilities, help them understand their rights and advocate for services and supports. The Center hosted a Twitter chat Parenting with a Disability During COVID-19:Insights from the #COVIDDisParenting Twitter Chat, where parents with disabilities shared their helpful strategies for staying healthy, active, and engaged; unique concerns and experiences; preparedness and unmet needs; and more.
Keywords: Parents with disabilities, parenting

Northern New Jersey Spinal Cord Injury System Center (NNJSCIS)

This center conducts research in interventions in rehabilitation and supports for people with spinal cord injury (SCI). In the COVID-19 and Spinal Cord Injury: Minimizing Risks for Complications podcast NNJSICS director Trevor Dyson-Hudson, MD and Carolann Murphy discuss some of the risks for people with SCI who may have reduced lung and cough function due to paralysis, and techniques and devices they can use to improve their cough. They also discuss the challenges of limiting social or physical contact when working with a personal care attendant, when a personal care attendant is unavailable, and keeping wheelchair contact surfaces clean and disinfected.
Keywords: Spinal cord injury, risk factors, respiratory health, personal care attendants

Rehabilitation Engineering Research Center: Develop and Evaluate Rehabilitation Technology and Methods for Individuals with Low Vision, Blindness, and Multiple Disabilities

This RERC conducts research and development in technology solutions to current barriers to opportunity faced by individuals who are blind, have low vision, and have multiple disabilities. This includes barriers to careers in science, technology, engineering, and mathematics (STEM). The team created an accessible pandemic bulletin, A11y COVID-19, to display data on infection rates that is accessible to screen readers and can be “sonified” on demand. The browser plays a different tone for each level on the graph, rising as the data indicates higher numbers.

Rehabilitation Engineering Research Center on Augmentative and Alternative Communication (RERC-AAC)

This center conducts research and development in AAC, technology that helps people who cannot communicate verbally because of neuromuscular disorders, autism, and other conditions. A recent article from the RERC highlights the need for effective communication to help these individuals understand what is happening and express their needs, wants, and important care details. The article describes how to prepare in advance for someone with complex communication needs, how to support understanding of COVID-19 for whose who may have difficulty understanding complex communication, ways to support expressive communications for someone who cannot rely on speech, and suggestions for healthcare workers providing care for someone who cannot communicate.
Keywords: Accessibility, communication, augmentative and alternative communication

Rehabilitation Engineering Research Center on Improving the Accessibility, Usability, and Performance of Technology for Individuals who are Deaf or Hard of Hearing

The researchers at this RERC assembled three guides to respond to communication issues that have emerged during this crisis: virtual meetings (now ubiquitous for working while under stay-at-home orders) need to be accessible for employees who are Deaf or hard of hearing, and hospital staff need to communicate with patients with hearing loss.
Keywords: assistive technology, inclusion, hearing, workplace accommodations, telework, medical facilities

Keywords: Deaf, hard of hearing, sensory disabilities, workplace technology

Rehabilitation Research and Training Center for Learning and Working During the Transition to Adulthood (Transitions ACR).

This center focuses on young people with mental health conditions as they transition from school to college and/or the workplace. COVID-19 Resources for Youth and Young Adults features curated content from including news stories from around the country, a Google Spreadsheet with hundreds of resources for youth, young adults, families, college, educators, and supporters; webinars on methods to support college students with mental health conditions who have been affected by disruptions in school; and selections from Transitions ACR publications and products which may be of help to students, administrators, and counselors.
Keywords: Psychiatric disabilities, youth, young adults, transition, college

Webinars:

Factsheets:

Rehabilitation Research and Training Center for Place-Based Solutions for Rural Community Participation, Employment, and Health (RTC: Rural)

This center conducts research and training activities that address the unique needs of people with disabilities living in rural communities. The staff is assembling resources to inform people living in these communities about the virus in general, ways to connect with services, and more.
Keywords: Rural, remote services, vocational rehabilitation, geography, economics

Rehabilitation Research and Training Center on Community Living and Participation for People with Serious Mental Illness

This center focuses on how people with serious mental illness engage with their community, from family leisure to creating welcoming workplaces and community spaces.
Keywords: Psychiatric disabilities, community participation, social isolation

  • Keeping Connected while Staying Apart includes a running list of resources to stay connected and engaged, the powerpoint from A National Conversation on Community Participation (3/26) and links to ideas for staying engaged (virtual theater, online class communities, art and learning programs).
  • Resources for Remote Community Participation (PDF) includes an extensive list of high-tech, low-tech, and no-tech ways to stay connected.
  • ConnectionsRx, a new program providing one-to-one support for individuals to identify interests AND the opportunity to connect to meaningful activities through a support group on Facebook. 

Rehabilitation Research and Training Center on Employment of Individuals with Blindness and Other Visual Impairments

Staff from this center led a recent forum discussion on remote training in vocational rehabilitation, through the Older Individuals Who are Blind – Technical Assistance Center (OIB-TAC). Since most training for people with visual impairment occurs face-to-face, many professionals are searching for new procedures to offer training during quarantines and physical distancing. Sylvia Stinson-Perez and Kendra Farrow, both Certified Vision Rehabilitation Therapists, facilitated discussions on working remotely, providing services and training in a remote environment, and identifying helpful resources.
Keywords: Blindness, visual impairments, employment, remote training, vocational rehabilitation

Rehabilitation Research and Training Center on Employment of People with Intellectual and Developmental Disabilities

This center focuses on the practices and policies that support successful employment of people with intellectual and developmental disabilities (I/DD), including autism spectrum disorder (ASD). The center has set up a collection of videos for families and professionals supporting individuals with ASD. How to: Teaching Handwashing explains how to cover hand hygiene, learning styles and challenges to consider, and examples of teaching strategies. How to: Handwashing for Individuals with ASD demonstrates hand hygiene in simple, straightforward language and images.
Keywords: Intellectual and developmental disabilities, autism, videos, personal hygiene

Rehabilitation Research and Training Center on Employment Policy and Measurement (EP-RRTC)

The EP-RRTC hosts monthly discussions on the state of employment of Americans with Disabilities as reported in the Bureau of Labor Statistics Jobs Report, along with related disability employment issues. On May 15th, 12pm ET, the EP-RRTC will host National Trends in Disability Employment (nTIDE) Special Report – Implications of COVID-19, where a team of experts will share their latest perspectives, based on data from a population survey released mid-month, on the coronavirus pandemic and its implications on employment, emerging bills and policies, and resources for the days ahead. The discussion will be archived for future viewing.

Rehabilitation Research and Training Center on Family Support

This RRTC is conducting a survey about issues related to COVID-19 and its impact on families supporting members with disabilities. The survey covers impacts on employment, financial well-being, social interactions, health behaviors, physical health, and mental health.  It also asks whether anyone in the household has been diagnosed with COVID-19 or are experiencing related symptoms. If you are providing unpaid care to a loved one because of an illness, disability, or functional problem, you will also be asked detailed questions about how COVID-19 has affected your caregiving duties and ability to provide quality care.  These answers will also be extremely helpful in designing programs to help caregivers during this difficult time.  Your responses will inform professionals and policy makers who are designing programs and interventions to help people cope with this serious public health crisis. 

Rehabilitation Research and Training Center on Integrated Healthcare and Self-Directed Recovery

This center creates, modifies, and improves self-directed models of medical care and mental health services that promote recovery, health, and employment for people with psychiatric disabilities. 

  • Managing Your Wellness During the COVID-19 Outbreak offers a collection of wellness self-management strategies and resources. Learn how to manage stress, cope with anxiety, combat loneliness, or explore virtual distractions with art, music, museum tours, and more. The collection also includes resources for physical health and wellness, supports for behavioral health providers and other support personnel, and resources to help children, teens, and young adults cope during the outbreak.

  • Self-Management Education and Support Referral Algorithm isdesigned to help primary care providers follow guidelines recommended by the Institute of Medicine to choose a self-management program to meet their patients’ needs at different stages of emotional distress. The algorithm identifies what kinds of knowledge patients need, the self-management programs that provide it, and how to locate these programs in their local communities. Modeled on the American Diabetes Association’s patient education algorithm, the algorithm features peer-delivered self-management programs because of their strong evidence-base and successful use in managing mental health conditions.
    Keywords: Psychiatric disabilities, health and wellness, telehealth

University of Alabama at Birmingham Spinal Cord Injury Model System Center (UAB-SCIMS)

UAB-SCIMS conducts research that supports people with SCI, their families, and the rehabilitation professionals who support them.

  • The video Tips for People with SCI During COVID-19 offers tips for individuals to maintain their health and daily living from UAB-SCIMS psychologists. Tips include keeping an eye on secondary conditions to avoid the need for hospital visits, maintaining a routine, getting exercise, and maintaining social contact.
  • UABSCIMS had dedicated the 2020 issue of their Pushin’ On newsletter to COVID-19. This issue features an article on staying healthy to avoid the impact of the virus, as well as articles on technology for independence and opportunities to participate in research.
    Keywords: Spinal cord injury, health and wellness, community participation

University of Alabama at Birmingham Traumatic Brain Injury Model System Center (UAB-TBIMS)

UAB-TBIMS conducts research supports people with TBI, their families, and the rehabilitation professionals who support them. The video Tips for People with TBI and their Families During COVID-19 offers suggestions for individuals to maintain their health and daily living from two UAB-TBIMS psychologists. Tips include maintaining a routine, staying informed and following recommended prevention guidelines, asking for help, and doing what you can to maintain your physical and mental health like exercise, learning activities, and keeping medications up to date.
Keywords: Traumatic brain injury, health and wellness, community participation