Americans With Disabilities: 2020 Election Priorities

with Peter Berns of The Arc

During the 2016 election, 1 in 6 eligible voters lived with a disability.

Peter Berns, CEO of The Arc, discusses key issues of importance for this expanding population, and disability community priorities ahead of the 2020 election.

Posted on:

Dec 02, 2019

Hosted by: Ellee Pai Hong
Produced by: National Newsmakers Team

Hong: Nearly 50 million people with disabilities live in the United States. With the 2020 election approaching, education, employment opportunities, Medicaid, and paid leave for caregivers are among the key issues for this population. Hello. Welcome to "Comcast Newsmakers." I'm Ellee Pai Hong. Joining me to discuss disability issues and the 2020 election is Peter Berns. He is CEO of The Arc. Peter, thanks so much for coming in. Appreciate your time today.

Berns: It's great to be here, Ellee.

Hong: You know, I hear that number -- 50 million Americans with disabilities. Obviously, those 50 million Americans have family members. That is a huge voting block, yet you don't hear much about disability issues within this presidential election season. Right?

Berns: Well, that's true. And The Arc, as the nation's oldest and largest disability rights and social services organization, is trying to change that. And so we're really calling on all the presidential candidates, both parties, to make sure that they speak to the issues and concerns of people with disabilities and their families] during the campaign.

Hong: And because of that, you actually did come up with a position paper for these candidates to read over and address, hopefully, on the national stage. And some of those issues -- there's a variety of issues, but one big one for you guys is Medicaid. And there's a multifaceted approach to all of this because there's a multitude of issues -- the first being, in order to take advantage of Medicaid, you have to be impoverished. But these are not -- this is not just going to see a doctor at a clinic or a hospital. These services for people with disabilities have a wide range.

Berns: Well, that's right. I mean, Medicaid is hugely important to people with disabilities and their families. I mean, Medicaid really makes their independence possible. And people depend on Medicaid to support their activities of daily living. Whether they need personal care in their homes or help making meals or transportation to get to their job or to get to a volunteer activity, they depend on the Medicaid program for that. And the reality with our current system is that there are probably more than 3 million families in the United States who are unable to access any government-funded developmental disability services and are basically left to fend for themselves.

Hong: And that's 83% of people with disabilities who aren't able to take advantage of services.

Berns: 83% of caregiving families, caregiving households are not getting any government support.

Hong: Which is an astounding percentage. And not only that -- many families are stuck on waiting lists that last for years on end.

Berns: Well, that's right. I mean, we have tracked this issue, and there are literally folks who are waiting to sign up for government services and supports for themselves and their families, and literally languish on waiting lists for five years, 10 years, 15 years or more. And they just can't get the services that they need to, then, you know, really be fully included and participate in their communities. And one of the reasons for that is there's an institutional bias in the Medicaid system, where the system that we've built tends to favor institutional services. So if you need nursing home care or if you're willing to go live in an institution, then you're more likely to get services than accessing the services you need to live in your own home.

Hong: Which is probably more expensive, right?

Berns: Much, much more expensive -- tremendously more expensive. And so one of the things we'd like to see the candidates address is, what are they going to do about this? Can they flip the system so that home- and community-based services are the rule, not the exception.

Hong: Another threat to Medicaid -- current Medicaid services that are lacking right now is something called "block granting." Can you tell us about that?

Berns: Sure. In a nutshell, there've been proposals over the past years to try to basically turn the money over to the states and let the states figure out how to administer their Medicaid programs. There would be no uniformity from place to place, there would be no additional funding when the economy turns south and there are more people in need, and we think that's a really bad -- a really bad option for people with disabilities --] or, for that matter, for anyone who's really -- makes use of the Medicaid program and for whom it's a really essential part of their wellbeing.

Hong: And I know one other issue that's very important to you guys is paid family leave. Currently, you can take family leave, but it's not paid.

Berns: Well, currently, if you're working for a larger employer, that's covered by the Family and Medical Leave Act, then you can take family leave of a certain duration and know that your job will be there when you get back, but you're not going to get paid for your time off. And we don't have a uniform policy around the United States to provide paid family leave. You know, the reality is that we're all going to experience the demands of being a caregiver, whether it's for a newborn younger child or an adult with disabilities or, for that matter, an elderly parent. We all encounter those situations. We struggle with the challenge [of balancing our family responsibilities and our work responsibilities. And folks need to know that they can take time off, still have their income, and, you know, handle all their responsibilities -- work and family.

Hong: And recent papers have come out that support paid leave as a talent recruitment strategy, not as an expensive benefit. So it's a trend that seems like is starting to take off.

Berns: Well, right. I think businesses are beginning to recognize that, if they have employees who are having trouble balancing work and family and they're distracted at work, the business needs to do something about that because, ultimately, it's going to impact the bottom line.

Hong: On that note, Peter Berns, thank you so much for joining us. Appreciate your time.

Berns: Well, it's great to be with you.

Hong: And thank you for joining us, as well. For more great conversations with leaders in your community and across the nation, visit I'm Ellee Pai Hong,

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