Pandemic Impact: Support for the Disability Community

Anderson: As the pandemic rages on, many Americans are struggling with isolation due to COVID-19 restrictions. People with intellectual and developmental disabilities are particularly vulnerable to the physical, emotional and social effects from the crisis. Hello and welcome to "Comcast Newsmakers." I'm Tetiana Anderson. The pandemic means budget shortfalls in many states, and that means likely spending cuts, causing advocates to worry about what that all means for disability supports and services. Peter Berns is the C.E.O. of The Arc. He's here to break it all down for us and share a little bit of hope for 2020 and beyond. And Peter, thank you so much for joining us.

Berns: Hi, Tetiana. Great to be with you.

Anderson: So let's start with this idea of strain on the states when it comes to their ability to serve people in the disability community. What is that looking like?

Berns: Well, you know, the pandemic has been really hard for everyone, as you noted, particularly difficult for people with intellectual and developmental disabilities. And they have suffered from tremendous isolation. Those who have been employed, many have lost their jobs. Many others have lost access to the services that they need to be included and to participate in their communities. And their families have really struggled with balancing their personal and work responsibilities with caregiving responsibilities as well. And the solution to a lot of that has to do with the state services system. So as state budgets go into crisis, there is real serious concern that the services are not going to come back and people are just really going to be locked into place and unable to really resume having a decent life in the community.

Anderson: When it comes to the coming year, your mission really is to focus on fighting the disparities, especially those that have been exposed by the coronavirus pandemic. What are some of those disparities and how are you battling them?

Berns: So we have a very basic goal, which is for people with intellectual and developmental disabilities to be valued members of their community with the opportunity to realize their full potential and a future that is secure. And we're not there quite as a society, and this pandemic has set things back. So we see disparities in all areas. Folks don't have jobs that could be working. Folks don't have good access to healthcare. Folks don't have good outcomes in terms of education. Folks with disabilities are just struggling with all sorts of social problems that are greater than is the case for the general population. And that's something that we need to work to address.

Anderson: So we're not there yet when it comes to these things. And we're also not there yet when it comes to tracking the deaths caused by coronaviruses of people in the disability community, whether it is themselves or their direct care providers. How troubling is that for you at The Arc?

Berns: It's really troubling. We know of incidents where the -- the virus has just run rampant in congregate settings and there have been lots of infections and hospitalizations and death. But we don't have a good global picture or a good picture all across the United States of what's going on and we've been advocating to the federal government that they need to come up with a better system for reporting so we do know about the true impact of this pandemic on people with intellectual and developmental disabilities.

Anderson: You are also looking at discriminatory policies when it comes to testing, care management, and other things that impact people in the disability community. What's going on with that? What are you seeing?

Berns: Yeah, our legal advocacy team has been really hard at work to prevent discrimination in healthcare due to disability. And we've actually brought actions against 13 different states, challenging their crisis-care plans to make sure that folks with disabilities are denied access to ventilators or other treatments. We fought against discrimination in terms of visitation policies to make sure that folks with disabilities, if they are hospitalized, can get the services and supports they need. And as the vaccine begins to roll out, we're really looking to make sure that people with intellectual and developmental disabilities are prioritized for getting the vaccine rather than put to the end of the list. And that the workers that support them also are prioritized to get the vaccine similar to other types of healthcare workers.

Anderson: All important things. And Peter, if people want to know more about what The Arc does, where should they go?

Berns: Visit our website at thearc.org. There's lots of great information for you there. And you can sign up to get involved and join our fight.

Anderson: Peter Burns, CEO of The Arc. Thank you so much for being here.

Berns: Thanks for having me.

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