As a healthcare funder that focuses on supporting comprehensive care for adults with developmental disabilities, WITH understands how deeply the intellectual and developmental disabilities community is impacted by COVID-19. In response, we re-allocated some of our funding into a COVID-19 Response Fund and invited 41 of our current and past grantees to apply for $25,000 grants through the fund. We asked them “What would your organization do with $25,000 to respond to COVID-19 and its impact on adults with intellectual and developmental disabilities?” Thus far, we have awarded two rounds of funding through our COVID-19 Response Fund, which have provided nine organizations a total of $225,000.

In today’s blog we followed up with the five organizations that were awarded grant funding (in the 1st round of COVID-19 Response grants) with an update on these projects:

Autistic Self Advocacy Network (ASAN)

The Autistic Self Advocacy Network used the COVID-19 grant funding to launch many advocacy and education efforts. Those efforts include:

• Plain language materials co-created with Green Mountain Self Advocates of Vermont explaining COVID-19 and discussing the implications for people with disabilities.
• Authoring a section to GMSA’s toolkit: a Know Your Rights guide explaining how people with IDD have a right to bring a supporter to the hospital even during COVID restrictions.
• Drafting a script for an animated video explaining COVID-19 in accessible language, and worked in partnership with Rooted in Rights to release the video.
• Creating and maintaining a COVID-19 Case Tracker which combines information from state and local governments with news media reports to get the most complete picture possible. 
• Advocacy efforts on state triage plans and hospital visitor policies. ASAN worked with other disability organizations to file challenges with the HHS Office of Civil Rights against states whose COVID-19 response plans could lead to discrimination against people with disabilities, including Tennessee, Utah, North Carolina, Oregon, Arizona, and Texas. 
• Educating the public about COVID’s impact on people with disabilities by speaking to journalists about topics including COVID-19 in congregate settings; the effect of COVID on home- and community-based services; how some states have codified discrimination in their plans for medical rationing if hospitals become overwhelmed; the importance of equitable vaccine distribution, and more.
• Creating Spanish-language translations of their plain-language COVID materials released earlier this year. 

Learn about this resource and more on ASAN’s COVID-19 resources page: autisticadvocacy.org/resources/

Disability Voices United

Disability Voices United used COVID-19 Response funds to provide people with disabilities, their families, and supporters with critical information on the COVID-19 pandemic. Projects included:

• The development of a comprehensive bilingual coronavirus website and twenty COVID Response Webinars on a range of subjects such as emergency preparedness, mental health, special education, and the impact on communities of color. The series can be found on the Disability Voices United YouTube channel and on the Disability Voices United Coronavirus website, which has been continuously updated throughout the pandemic with bilingual resources for people with developmental disabilities and their families.
• The creation of a Tip Sheet for providers to support patients with IDD along with communication charts to ensure that patients with intellectual and developmental disabilities are respected and provided supported decision making and communication supports. The Tip Sheet has been distributed through COVID and SDM Town Halls, to the Disability Voices United email distribution list and can be found on the Disability Voices United website.
• The development and distribution of a survey of self-advocates and families that found that many were not receiving desperately needed supports. The survey received media coverage and led to changes at the state level. 
• The promotion of early access to the COVID-19 vaccine for people with disabilities.

To learn more about these efforts, visit:  disabilityvoicesunited.org/cv/webinars-by-disability-voices-united/

Kaiser Permanente Northern California Division of Research

The COVID-19 pandemic has led to dramatic changes in usual daily routines and the way healthcare is delivered to patients at Kaiser Permanente Northern California (KPNC). Nearly all non-urgent health care encounters have been transitioned to virtual telemedicine (video, telephone) visits. 

Adults with intellectual or developmental disabilities are a particularly vulnerable population and may be especially impacted by these changing times. Many autistic adults have co-occurring psychiatric and physical health conditions that require consistent access to health care services and therapies. Thus, the present disruption to healthcare and general uncertainty of the pandemic may put this population at higher risk of health complications and unmet healthcare needs.

Kaiser Permanente’s Northern California Division of Research is in the midst of conducting a study to determine whether KPNC’s shift to telemedicine is meeting the healthcare needs of the large and growing population of autistic adults. Specific aims of the project are to:

• Characterize the impact of the COVID-19 pandemic on measures of healthcare utilization and health status, particularly with respect to mental health and management of co-occurring chronic conditions among adults with autism spectrum disorders (ASD).   
• Examine changes in utilization (pre-pandemic vs. during pandemic) by sociodemographic factors (sex, race/ethnicity, age) and health status (medical and psychiatric diagnoses). 

The goal of this study is to determine whether KPNC’s shift to telemedicine is meeting the healthcare needs of our large and growing population of autistic adults. The findings will lay the groundwork for follow-up studies to identify barriers to telemedicine access and enhance and tailor telemedicine delivery to the needs of adults with ASD and other developmental disabilities. 

Oregon Health and Science University Foundation

Adults with I/DD who rely on augmentative and alternative communication (AAC) need to be prepared to participate in telehealth appointments, especially if they have concerns about COVID-19 symptoms. The Oregon Health & Science University UCEDD, in collaboration with the Assistive Technology Lab (AT Lab) at Community Vision, created four animated videos called Telehealth-and-You that are available in Spanish and English, both with closed captioning. They are accompanied by written transcripts for individuals who use screen readers or need more time to process words, as well as by Tar Heel Readers- electronic books with the same pictures and text for emerging readers. They are written for people with I/DD who rely on AAC and address four areas:

1. What is Telehealth? 
2. How to Schedule an Appointment. 
3. How to Prepare for an Appointment. 
4. How to Participate in an Appointment.

Each video is between two and six minutes long and uses plain language and was produced with additional potential end-users in mind, including those with limited health literacy skills, individuals who are non-English speakers, and other citizens who require information about telehealth visits. A focus group of individuals with I/DD who rely on AAC guided every step of this project. The group relied on virtual meetings and emails to decide on the topics for the videos, to help form the scripts, to select images for animation, and to review finished products. 

The four videos have been disseminated to thirty four organizations, government offices, advocacy groups, and conferences. Eighteen local and regional partners, such as the Oregon Council on Developmental Disabilities, the Oregon Self Advocacy Coalition and MODA Insurance, ten  national partners such as Assistive Technology Facebook groups, the United States Society for Augmentative and Alternative Communication (USSAAC), and the Association for University Centers on Disabilities (AUCD), as well as five  international partners such as Patient-Provider Communication Coalition and Communication Disabilities Access Canada, have received information.

The Vice President for Telehealth Services at the Oregon Health & Sciences University is currently advocating through outpatient services to send these videos to every patient at OHSU who is scheduled for a virtual visit. OHSU has contacted over 30,000 virtual visits since the COVID-19 pandemic began. The Telehealth and You videos (English and Spanish versions), transcripts (for screen readers), Tar Heel reader books (for individuals who need additional processing time beyond video presentations, and for emerging readers) can be found at: www.ohsu.edu/university-center-excellence-development-disability/telehealth-and-you.

The American Academy of Developmental Medicine & Dentistry (AADMD)

AADMD has a keen understanding of the challenges that COVID-19 caused for people with DD/IDD. They responded by developing targeted education, advocacy and resource development geared to this patient population. AADMD launched an online Coronavirus Center (aadmd.org/coronavirus) on March 27, 2020 to provide a place to share resources, knowledge and advocacy efforts during the pandemic, including a three-part “COVID-19 & People with IDD” webinar series. The series featured Dr. Geoffrey A. Weinberg, a Professor at the University of Rochester specializing in infectious diseases as well as Dr. Seth Keller who discussed healthcare concerns of people with IDD and Dementia. The third webinar in the series will feature Dustin Plunkett, self-advocate and Special Olympics Manager of Outreach, and Dr. Alicia Bazzano, Chief Health Officer of Special Olympics International, to discuss their pandemic response and their work with the Centers for Disease Control and Prevention.

AADMD also launched advocacy efforts to ensure people with IDD are not discriminated during the pandemic including two petitions:

• The Ventilator Rights petition asks hospitals to not use the presence of an intellectual or developmental disability as exclusion criterion for ventilator support. Nearly 1,000 people have signed this petition and 11 organizations have joined the effort as official signatories.
• The Visitation Rights petition asks hospitals to allow caregivers to accompany patients with IDD for in hospital support. Over 20,000 people have signed this petition and 23 organizations have joined as official signatories.

(At the time of publication of this blog, AADMD has not submitted their project’s final report so the information (above) is a summary of the efforts discussed in their application and information from their website.)

To learn about the projects supported in the 2nd round of funding through the COVID-19 Response Fund, please visit: withfoundation.org/with-foundations-covid-19-response-fund-grantees-round-two/

Thank you to the teams and individuals involved in each of these projects. WITH appreciates the work that ALL of our grantees are doing to address the challenges of this pandemic.

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ANNOUNCEMENT: 

WITH Foundation is providing a 3rd round of funding through our COVID-19 Response Fund.  This round of funding will be open to the nonprofit community (not just current and previous WITH grantees). This funding will specifically support healthcare service delivery models that address the needs of adults with intellectual and developmental disabilities (I/DD) affected by long-haul COVID-19. This funding opportunity seeks to support existing COVID-19 services and clinics in being intentional in addressing the needs of adults with I/DD experiencing long-haul COVID and can also support healthcare institutions and providers to develop resources related to addressing the needs of adults with I/DD experiencing long-haul COVID. 

WITH Foundation will give preference to the programs and projects that formally include and/or partner with self-advocates (or self-advocacy organizations). WITH will provide up to four (4) $50,000 grants through this opportunity. Organizations selected to receive funding will receive the funds in late January 2022. 

Applications for the 3rd round of COVID-19 Response grants will be accepted beginning October 25th. The submission deadline is November 30th by 5pm PT. To apply, visit: withfoundation.org/current-grant-cycle/ during this timeframe for more information.