Workforce Shortage Impacting Care for People With Disabilities

Anderson: In his 2023 State of the Union address, President Joe Biden acknowledged his administration's commitment to home care for people with disabilities. President Biden: Let's get seniors who want to stay in their homes the care they need to do so. Let's give more breathing room to millions of family caregivers looking after their loved ones.

Anderson: Hello, and welcome to "Comcast Newsmakers." I'm Tetiana Anderson. There are close to seven million Americans with intellectual and developmental disabilities. In the 1980s, home and community-based service waivers were established under Medicaid, but due to funding shortages and lack of investment, people seeking home care services can remain on wait lists for years, or even decades. Joining me to talk all about this and more is Julie Ward, Senior Executive Officer of Public Policy with The Arc. And, Julie, thank you so much for being here.

Ward: Thank you so much for having me.

Anderson: So, what have you learned about why subsidized care is better, when it comes to supporting quality of life, health, and so much more?

Ward: It's really what people want. It's what individuals with intellectual and developmental disabilities want. They want to live in their home. They want to live in their community. They want to have the supports that they need to live a full life. They don't want the alternatives of nursing homes or institutional care.

Anderson: So, then where are people left when they don't get funding? What happens?

Ward: I think people are left in a situation of either forced into a nursing home or an institution because that's the only required service that's available to them, or the family pulls together, but it can be a real strain on the employment situation of the parents or caregivers. It can be a very difficult and stressful situation. Our family caregivers tell us that they need more help and support to be able to keep their loved ones at home.

Anderson: And so, to drive that help and support, I know that The Arc is working on the issue of paid family leave. Talk to us about what you're doing and why.

Ward: We think this is a very critical issue. We were strong supporters of the Family Medical Leave Act, which, this year, is celebrating its 30th anniversary, but it's unpaid leave. It's an important job protection, but it's unpaid, and we feel that it's well past time for paid leave in our society and that would be the thing that could help families manage the care, keep their jobs, be more economically stable.

Anderson: And what about the people who are actually providing that care in the home, the direct support providers, what are the challenges that they're facing?

Ward: I think direct support providers face a lot of challenges. It's skilled work. It's difficult work. Depending on the individual they're supporting, they have to have a variety of skills and abilities, but it's not well-paid and there's a lot of turnover. The competition for these workers, they can make $15 an hour, which is the average pay at retail, at fast food, so, it's a very demanding job that's not well-compensated.

Anderson: And, in his 2023 State of the Union address and again in April, via executive order, President Joe Biden really issued this call to action, when it comes to, you know, the home and community-based service system. How has that call to action really impacted your ability to do that work and to plan for the future?

Ward: We were very, very excited to have the president mention this issue in his State of the Union address. It really brings awareness and attention to something that we think really is hidden from view. It falls under the radar for a lot of folks. The executive order also directs the government to look for ways to support families and support caregivers and we think those actions help us in Congress and they help with the work that we're doing to lobby for more funding and the services and supports that people need. That awareness and public education is vital.

Anderson: And I know people are going to want to know more about all of this, so, what's your website, where should they look?

Ward: Our website is www.thearc, which is thearc.org.

Anderson: Julie Ward with The Arc, as always, thank you so much for being here.

Ward: Thank you so much for having me.

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, visit Comcastnewsmakers.com. I'm Tetiana Anderson.