Disability in the Time of COVID-19

In March 2020, the nation took precautions designed to stop the spread of coronavirus. Businesses across the country shut down. Families and students adjusted to remote work and learning. I was right there with everyone, and my experience with taking preventative measures and adapting to a remote work environment—while a bit of a learning curve—was still manageable. However, my brother, who was born with cerebral palsy, faced challenges that were far more difficult and harmful.

Interruptions in care services and delays in the delivery of critical supplies became his reality overnight. His experience mirrored what was happening across the country to those with disabilities as everything moved online. People living with disabilities were adversely affected by disparities in accessible information, and it isn’t getting any better as the pandemic wears on.

According to the CDC, one in four Americans in the United States have some type of disability. Researchers expect this statistic will change in the near future as a cohort of COVID-19 patients become disabled due to the virus. Meanwhile, in the midst of all the chaos, the existing group of vulnerable people who have historically struggled to be recognized like my brother, are trying to survive the pandemic. There is a bright side, though. The impact of COVID-19 on the disability community has pushed this issue to the forefront. People are finally aware of what the disabled community goes through, although there is still much work to be done.

The New Practice Lab, in partnership with The American Association of People with Disabilities and with support from Blue Meridan Partners, launched a research sprint in order to understand what the disabled community faces in this time of COVID-19. The sprint examined what key areas of concern are, identified barriers to care, and provided recommendations that will inform advocacy efforts and policymaking. The sprint, led by myself and my co-lead Nikki Zeichner, uncovered several important research points including the fact that not enough people are focusing on this topic since the onset of the pandemic. The New Practice Lab saw value in this opportunity to help ensure that the disability community’s right to live safely, access critical services, and secure equitable and inclusive economic recovery is guaranteed.

AAPD, a nonprofit focusing on increasing the political and economic power of people with disabilities, is one of the nation’s leading organizations combating the threat to recovery and resilience for the community. When we started this project, we didn’t realize just how fragmented and deep the problems were. During our research, we spoke to stakeholders from organizations such as the Center for American Progress, The Arc, National Council on Independent Living, to name a few. There are five key issues we uncovered. We provided recommendations to address these issues.

Issue #1: The pandemic has increased the need for home and community-based services (HCBS)

Recommendations:

• Pass the COVID HCBS Relief Act of 2020.
• Fund “Money Follows the Person” (MFP) programs at the state level that provide support for individuals as they transition out of congregate care settings and into independent living

Issue #2: Federal laws and cash assistance programs were designed in ways that perpetuate poverty in the disability community, and this has created harm during the pandemic

Recommendations:

• Foster economic stability for the disability community by eliminating subminimum wages and increasing the asset thresholds for SSI recipients
• Modernize public benefit programs so that recipients can spend cash more flexibly during a crisis
• Maintain the emergency Broadband benefit from the CARES Act

Issue #3: Finding direct support professionals (DSPs) has always been hard but the pandemic has made it harder

Recommendations:

• Increase wages for DSPs
• Create Medicaid support for family/community members who currently provide unpaid care for people with disabilities

Issue #4: Digital solutions enabling civic life during the pandemic are not accessible for segments of the disability community

Recommendations:

• Conduct paid usability testing with the disability community for new digital public programs
• Proactively conduct accessibility audits of existing digital-first public services
• Set WCAG 2.1 AA standards for accessible design as a minimum requirement for user-facing classroom and healthcare tech products
• Increase access to affordable equipment that will enable children and parents with disabilities to access the same educational opportunities as students and parents without disabilities

Issue #5: Pandemic responses have not addressed the needs of the disability community. Also, the pandemic has made the disability community less visible, which has posed challenges to disability rights advocacy

Recommendations:

• Always make emergency information accessible for people with disabilities
• Government agencies need to set a standard way of offering:
  • listening options for the visually impaired
  • close captioning in video conferences for people with hearing impairment as well as for people with intellectual or developmental disabilities (IDD)
  • native ASL interpretation in televised conferences
  • printed materials written in plain language for those who have trouble accessing the internet
• Include members from the disability community in emergency response planning
• At all levels of government, every agency should intersect with its corresponding office of people with disabilities

We heard from our interviewees that stories of the COVID experience need to be told from the perspective of people living with disabilities. We produced a series of stories from high-risk individuals who spoke about the hardships of living independently, thriving professionally, and navigating this crisis. We published them here.

Our work will culminate on Wednesday, March 3, 2021 at 4:00 p.m Eastern with a conversation with AAPD’s President and CEO Maria Town as well as key advocacy partners. We will focus on home- and community-based services and the effects the pandemic has on the disability community.

As Americans struggle to get back to normal and build towards recovery, the reality is that that this journey is more difficult for those living with disabilities. These powerful stories give a face and soul to the issues we believe will help decision-makers identify and pass policies that will improve equitable access to benefits and services, promote inclusion, and provide the support needed to live a full and productive life.