COVID-19 Impact on the Disability Community

Anderson: The COVID-19 pandemic has affected all of us in some way. It's much more than a health crisis. It's a social, economic, and human crisis. Hello and welcome to "Comcast Newsmakers." I'm Tetiana Anderson. The COVID-19 pandemic has revealed some crucial needs for folks with intellectual and developmental disabilities. It's also raised some serious concerns about the funding that's needed both now and in the future. Joining us to talk a little bit more about that is Peter Berns. He is the CEO of The Arc. And, Peter, thank you so much for joining us.

Berns: Good to be with you, Tetiana. Thanks for having me.

Anderson: And so, Peter, let's start with just a little bit of information about what The Arc's mission is and the population that you serve. I think that would be really helpful for our viewers.

Berns: Great. Happy to do that. So, The Arc is a nationwide charity that advocates with and on behalf of people with intellectual and developmental disabilities and also provides services and supports. And our mission is to protect and advance their human rights and to support their being included in their communities and fully participating in everything that life has to offer. We do that through a network of 610 chapters all across the country, both state and local chapters.

Anderson: So this pandemic has arguably impacted absolutely everybody, but specifically when it comes to the population that you serve, how has COVID-19 really set the environment back? Explain to us what's been going on.

Berns: Well, the pandemic has really upended life for people with intellectual and developmental disabilities and their families. And a lot of the programs, the services, and supports that they depend upon to participate in their community have closed down. They have lost their jobs. We've had lots of family members who have had to leave their jobs to stay home and support their loved ones with disabilities. And the organizations that serve them, they've had to close down programs. They've had to try to now support folks 24/7, living in their homes, and have used technology much more aggressively to support folks remotely. And we're concerned that it's going to be a long time kind of coming back as we try to recover from this pandemic.

Anderson: So, speaking about a long time coming back, a lot of the people that you serve have waited a long time for services in the first place without the pandemic. So what are you seeing in terms of COVID-19 compounding that and impacting this ability to access services even further?

Berns: Well, that's a really important point, and I think that one of the things that folks don't really understand is that even before the pandemic, life has been really challenging for folks with intellectual and developmental disabilities and their families, and a lot of the services that they depend on, and the home- and community-based services to live in their community, well, there are long waiting lists to get access for these services -- some as long as 10 years. And so lots of individuals and families have been left to fend for themselves, and we're really concerned about whether these services are going to come back and whether we can return to a place where people with intellectual and developmental disabilities are able to be included in their communities and have a decent life.

Anderson: So it's not just about the services, though. It's about the cuts to funding that have also come along with the pandemic. What sort of layer of complexity does that add for you in trying to service this population?

Berns: People with intellectual and developmental disabilities depend on home- and community-based services. You know, it's a full range of different services. It may be someone to come in to help them get out of bed and bathe in the morning, to have breakfast. Maybe they need help getting to and from work if they're lucky enough to have a job. A broad array of services that are funded through Medicaid. It's a combination of both state and federal funding. And as the pandemic has caused these huge deficits for the federal budget and state government budgets, and we're concerned that the waiting lists are going to get even longer and longer and that a lot of the services that people have depended upon, they're just not going to come back. And so we're really going to, as an organization, have to work very hard to make sure that that doesn't happen and that we can get back to a point where people with disabilities can be fully included and participate as valued members of their communities.

Anderson: And finally, Peter, you guys really advocate a sort of home-based care approach. Quickly explain why what we've been going through just makes that mission even more more important.

Berns: The pandemic has illustrated that when you congregate people in living places like nursing homes or institutions, they're at risk. The virus has really run through those settings. So it's really important that we have a system that supports people to live in their own homes in their community or in their family homes in the community so their health isn't at risk but also so that they can fully partake in a decent life, a life of personal significance.

Anderson: And if people want more information about The Arc, where should they go online?

Berns: Please visit our website at TheArc.org and sign up to get involved, get our public policy, see alerts, and help out. We need your help.

Anderson: Peter Berns, thank you so much for joining us.

Berns: Thanks for having me, Tetiana.

Anderson: And thanks to the viewers, as well, for joining us. for more great conversations with leaders in your own community and across the nation, be sure to join us at ComcastNewsmakers.com. I'm Tetiana Anderson.