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  • Writer's pictureTogether for Choice

Advocacy During the Pandemic

Updated: Oct 31, 2022

As much as the COVID-19 pandemic has interrupted social life as we know it, few feel this disruption more than people with disabilities and their families. In TFC’s world of advocacy for people with intellectual and developmental disabilities (I/DD), the work has not slowed, though it certainly isn’t business-as-usual. Here’s how a few of us are adapting to the current conditions.


Our friends at ACCSES typically send weekly update emails, but since the pandemic has reached the U.S., they began sending updates daily. These email blasts focus primarily on disability-related news and policies. Additionally, ACCESS hosts regular calls for their members’ participation. Ralph Lollar from the U.S. Department of Health and Human Services spoke with members about ongoing developments with emergency waivers for Home and Community Based Services (HCBS) funding. ACCSES furthermore has convened a Reopening and Going Forward subcommittee to strategize next steps for after the COVID-19 curve flattens.

On April 10, ACCSES joined ANCOR, APSE, the Arc, and Easterseals in signing a letter to Congressional leaders requesting they prioritize the needs of people with disabilities in upcoming stimulus bills. The letter is significant not only for the much-needed resources it requested of our government, but also for the symbol of oft-opposing disability rights advocates can work in concert for a common benefit.


Even though most of the National Council on Severe Autism’s (NCSA) directors are now caring for loved ones with significant challenges through sheltering in place, they have continued their presence advocating for rights of people with severe autism and their families. Their work has shifted from extensive policy-oriented advocacy to a focus on sharing information with families of people with severe autism related to COVID-19. Their virtual “Coronavirus Share & Care” events have featured discussions on child and adult benefits through COVID-19, what advocacy in the near future can look like, and a conversation with podcast host Amanda Kelly (Behaviorbabe) offering suggestions for home activities for people with severe autism through sheltering in place.


VOR’s Executive Director Hugo Dwyer remains very active in convening members to share their experiences and challenges while collaboratively planning for an uncertain future. Members from 32 states discuss how to best pressure state offices to respond appropriately to federal guidance issued in response to the coronavirus. Additionally, Mr. Dwyer, VOR’s Board of Directors, and its Legislative Committee are working together determine how to best address state and federal lawmakers to systematically track how vulnerable populations—including people with I/DD, medical, and behavioral challenges—respond to COVID-19, specifically numbers of cases in all residential facilities. This ask is particularly difficult as states often do not have accurate counts of these total populations. Mr. Dwyer thinks the lack of accountability is partially due to the lack of oversight of private home and community based service providers, whereas publicly-owned Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID) are regularly held to more stringent expectations from the state.

VOR furthermore is strategizing a response to longer-term policies. Looking ahead to what our society may look like as COVID-19 cases stabilize and decline, we expect to continue to be in an economic downturn. As is commonly the case even in periods of growth, people with disabilities and their support staff are easily taken advantage of through disinvestment. Mr. Dwyer believes that services for people with IDD have been historically underfunded, whether the individual is living in a family home, their own home, a group home, an intentional community, a farmstead or an intermediate care facility. VOR is currently weighing various approaches to ensure state offices prioritize our vulnerable population when restructuring public finances in the months and years to come.


Here at Together for Choice, we have facilitated discussions between our organization and individual members to share information, strategies, and resources for these unprecedented times. We have twice hosted calls for members that focused primarily on the different ways the pandemic has impacted supports and services for people with I/DD, as well as how organizations have adapted their programming and staffing, and discussing how to go about receiving state and federal emergency funds. We are furthermore sharing opportunities to correspond with members of Congress asking them to include and amend various portions of coronavirus-related legislature to ensure its fair representation of the needs of people with I/DD, including expanding Medicaid payments to not exclude ICF/IID settings.

By Jonathan Neidorf (Assistant to the TFC Board)

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