Expanding Services for People With Intellectual and Developmental Disabilities

Anderson: 850,000 people with disabilities are on wait lists to get home- and community-based services, and sometimes that wait can last for up to a decade just so they can get the support that they need. Hello, and welcome to "Comcast Newsmakers." I'm Tetiana Anderson. For years, the service system that people with intellectual and developmental disabilities rely on has fallen far short of meeting their needs, and COVID-19 has made it worse, shining a spotlight on why some home- and community-based services are just so critical. An effort is now under way to improve the scenario. Peter Berns, CEO of The Arc, is on the front lines of this battle. And, Peter, welcome back.

Berns: Thank you, Tetiana. It's great to be with you today.

Anderson: So let's start with the problem, and then we can get to the solution. Your organization serves a population that deals with things like cerebral palsy, autism, Down's syndrome, and a range of other issues. And just about all of them rely on the Medicaid system for their care. But I know that you say that there is a sort of institutional bias in that system for these people who are trying to get services. What do you mean by that?

Berns: So The Arc's on a mission as a nationwide charity federation to make Medicaid-funded home- and community-based services available to all people with disabilities who need them. And the problem today is that the system that was built over the years has a bias for institutional services. So Medicaid funds, for example, doctors and hospitals. It also provides funding if people need services in a nursing home or in an institution. But the home- and community-based services to support people to live in their homes and in the community, those are optional services under Medicaid. And the result is the very long waiting lists as people wait for literally 8 to 10 years to get home- and community-based services. And so what we're trying to do is flip the system and really make sure that home- and community-based services are mandatory and available to everybody who needs them and that the institutional services are still available, but they're exception rather than the rule.

Anderson: And so coronavirus has actually exposed some of these cracks in the system. And we know that lawmakers are working on better ways to open up direct funding for direct in-home care. And with that greater funding, there's going to be a pretty positive knock-on effect. Explain how that's the case.

Berns: Yeah, well, you know, I do want to make clear that we'll never say that there was any kind of silver lining in this pandemic because people with disabilities and everyone has just suffered terribly with the pandemic. But the pandemic has helped to shine a light on problems. And we advocated very strenuously over the course of a year and achieved in the American Rescue Plan an investment of $12.7 billion for home- and community-based services. And that's a one-year commitment. That then sets up the opportunity to, under the American Jobs Plan, to be pursuing $400 billion in support for home- and community-based services. And so we recognized through the pandemic the danger and risk to people when they're congregated in large group settings. And we've recognized how people's lives have been put on hold. And we've recognized the challenges to families as they have had to juggle their work responsibilities and their caregiving responsibilities. And so this all creates an opportunity for us to do a lot more moving forward this year and into the future.

Anderson: And this isn't just about having one conversation about this issue or passing one law. The conversation about equality, about civil rights, about justice for everyone, including people who are living with intellectual and developmental disabilities, is one that needs to happen for a long, long time, isn't it?

Berns: Absolutely, and The Arc as an organization has been working on these issues for more than 70 years, and tremendous progress has been made. But the fact is that life still can be very challenging for folks with intellectual and developmental disabilities and other disabilities. And it's particularly so for people with disabilities of color who are part of other marginalized communities. So it's a long-term effort. It's a long-term fight, really, to achieve full inclusion for people with disabilities in their communities so they can have -- realize their potential and they can have the same type of life opportunities that we all enjoy and sometimes take for granted.

Anderson: And if people want to find out more about the work that The Arc does, where can they go? What's the website?

Berns: Visit our website, thearc.org. And get involved. There are a lot of different ways to get involved with our organization, so join our fight.

Anderson: Peter Berns, CEO of The Arc, thank you so much for being here.

Berns: It's great to be with you again.

Anderson: And thanks to our viewers, as well, for watching. As always, for more great conversations with leaders in your own community and across the nation, be sure to log on to comcastnewsmakers.com. I'm Tetiana Anderson.