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, WITH has re-allocated approximately 7% of its annual grant funding into a COVID-19 Response Fund. We invited 41 of our current and past grantees to apply for $25,000 grants through the fund. Applicants were asked to provide a brief summary of what their organization would do with $25,000 to respond to COVID-19 and its impact on adults with intellectual and developmental disabilities. 

WITH Foundation is pleased to provide funding for the following projects, through the COVID-19 Response Fund:

The American Academy of Developmental Medicine & Dentistry (AADMD)

In response to COVID-19, AADMD saw the need for targeted education, advocacy, and resources tailored for patients with IDD. They launched an online Coronavirus Center (aadmd.org/coronavirus) on their website to provide a place to share resources, knowledge, and rally advocates to protect the rights of people with IDD during the pandemic. Since the Coronavirus Center launch, AADMD has had 9,058 unique visitors, 17,659 pageviews and close to 50,000 people sign their online petitions. From this platform, AADMD consolidates all of its COVID-19 related materials and efforts, including their popular webinar series “COVID-19 & People with IDD” which has drawn nearly 1,700 attendees, in total. Funding from WITH will allow AADMD to further develop these resources and will reach more healthcare professionals treating patients with IDD.

Autistic Self Advocacy Network (ASAN)

ASAN, in partnership with a number of other disability rights organizations, is working hard to elevate the needs of people with disabilities in the U.S. response to COVID-19. ASAN has partnered with other self-advocacy organizations to ensure that information about the pandemic, staying safe, and people’s rights are accessible to as many people with IDD as possible. Grant funding from the WITH Foundation will allow ASAN to sustain that work, support other self-advocacy organizations, reach more of their community, and respond not only to the current crisis, but to the underlying structural factors and systemic failures which have placed the disability community in danger. Specific projects include:

  • Plain language materials co-created with Green Mountain Self Advocates of Vermont explaining COVID-19 and discussing the implications for people with disabilities. Spanish language version to come.
  • The creation, in partnership with Rooted in Rights, of an animated video in plain language explaining COVID-19 and social distancing. Spanish language version to come.
  • Working to restore service disruptions that directly impact individual’s rights to care, self-determination, independent living and community integration.
  • Tracking and documenting infections and deaths of people with disabilities in congregate settings due to COVID-19 via an online tool available to the public.

Disability Voices United

Disability Voices United has been in the forefront of the intellectual and developmental disability community response to the COVID-19 pandemic. By the end of the first week of March, DVU pivoted its work and began developing a comprehensive resources website for people with I/DD and their families. The website, www.disabilityvoicesunited.org/cv, which has also been translated into Spanish, continues to be updated almost daily with the latest information and has been viewed thousands of times. Within a week of launching the website, DVU hosted its first webinar on the rights to regional center services during the COVID crisis. Over the following weeks, DVU hosted nine more webinars on the subjects of emergency preparedness, mental health, special education, the impact of COVID-19 on disability communities of color, and the rights to healthcare, housing, and communication supports. DVU plans to host one webinar a week for the foreseeable future.The webinars are all simultaneously interpreted into Spanish. 

Webinars featured self-advocates and family members, including Tim Jin, Stephen Hinkle, Hector Ramirez, and Leroy Moore, Dr. Clarissa Kripke (UCSF’s Office of Developmental Primary Care), Dr. Alicia Bazzano (Special Olympics), and Tauna Szymanski (Communication First). In addition, DVU has worked with other organizations to advocate for the rights of people with I/DD through this crisis. Grant funding from WITH will allow DVU to continue and expand their activities while maintaining their commitment to reach out to underserved communities.

Kaiser Permanente Northern California Division of Research

The COVID-19 pandemic has led to dramatic changes in usual daily routines and the way health care is delivered to patients in the United States, including California, which has been under a statewide shelter-in-place order since mid-March. At Kaiser Permanente Northern California (KPNC), a large, integrated health care delivery system, nearly all non-urgent health care encounters have been transitioned to virtual telemedicine (video, telephone) visits. 

Public health experts and community leaders anticipate that social distancing and changes to daily life will persist into 2022, indicating that the growth of telemedicine will accelerate and redefine the future of health care delivery. However, at present very little is known about how these changes are impacting the health care utilization and health status of KPNC’s 4.4 million members. 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.

DOR will conduct a study to determine whether KPNC’s shift to telemedicine is meeting the health care needs of the large and growing population of autistic adults. These 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. Future work could include interviews with autistic adults about their telemedicine experiences, longer follow-up on the impact of the pandemic on the health status of autistic adults, and comparisons with COVID-related health care changes in adults with other special health care needs. Critically, these findings will support early identification of unmet health care needs and trigger development of strategies to improve telemedicine for this population.

Oregon Health and Science University Foundation

Adults with I/DD who rely on 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, a Portland OR disability nonprofit organization, will produce products that address communication and telehealth needs during the COVID crises for adults with I/DD who rely on AAC. During this crisis, many adults with I/DD who are managing chronic health conditions with little access to their healthcare providers and have the opportunity to receive medical treatment through this virtual medium. But most of the existing resources are written for health care professionals or contain language (including text) that may not match the literacy and cognitive skills of the person with I/DD. This project will prepare these individuals to enter an appointment with access to their own words on communication boards with symbols or with speech generating devices. In addition, OHSU will continue to collaborate with other stakeholders who are teaching the general public about telehealth requirements for virtual visits to provide cognitively accessible materials for those with I/DD who rely on AAC, their families and direct support workers.

Thank you to the teams and individuals involved in each and these projects. WITH appreciates the work that ALL of our grantees are doing to address the challenges of this pandemic. To learn more about the work of our grantees, please visit: withfoundation.org/previous-grant-recipients.