Title: What’s an “Advocrat?” Hint: This Biden Admin Official is One! 
Guest: Alison Barkoff, U.S. Administration for Community Living
Release Date:  6/14/24


ANNOUNCER:  It’s You Earned This, the Social Security and Medicare podcast, brought to you by the National Committee to Preserve Social Security and Medicare, and now your host, Walter Gottlieb.

WALTER:  Did you know that older Americans have their own month? They have their own month. It just finished for this year. Older Americans Month recognizes the contributions of older adults to our society. The same federal agency that promotes Older Americans Month is also tasked with promoting home and community-based care for our seniors, which is an alternative to nursing home care. So we’re happy to have with us today the head of that agency, Alison Barkoff.We’ll talk more about where we are with making home and community-based care available to the nation’s seniors and what this year’s Older Americans Month was all about. Hello, Alison. How are you?

ALISON:  I’m great. Thank you so much for having me on the show today. 

WALTER:  We appreciate your being here. Believe me, we love having VIP guests. You’re one of them. I do want to ask, though, for people who don’t know: so you are the acting head of the Administration for Community Living on the federal level. What is ACL and what does it do? Because a lot of people think it’s part of your knee. 

ALISON:  Thanks so much for the opportunity to share. I feel very privileged to lead the Administration for Community Living. And as you mentioned, we are a federal agency that’s part of the U.S. Department of Health and Human Services. And we’re part of the federal government that does a couple things. First of all, we run a lot of the aging and disability programs that are across the federal government. In fact, we have 20,000 grantees that are in every state and almost every community. You may be familiar with some of them. Some of our grantees include things like area agencies on aging, centers for independent living, ‘no wrongdoer’ entities. And our networks provide things like direct services, like senior nutrition meals and senior centers. They provide information and referral, connecting people with community-based services and legal advocacy both for people with disabilities and older adults. We also do research and we have an entire institute focused on disability and independent living research. And then really importantly, and this makes us different than a lot of other federal agencies, we actually have an advocacy role. We are here to advocate on behalf of older adults and people with disabilities in all federal policies. So we do a lot. And I think the main thing that makes us really the vision is we think that all people have a right to live and participate in their communities. So that’s a little bit about what ACL does. And you can find out a whole lot more at our website, acl.gov. 

WALTER:  That is quite a mandate, Alison. Like when do you guys sleep? 

ALISON:  There hasn’t been a lot of sleep for me. I joined ACL… I’m a political appointee and was appointed by President Biden and started at 12:01. The moment that the administration took over. And I will say the last three and a half years have been very busy. Not a lot of sleep, but a lot of advocacy and I think a lot of success on behalf of the aging and disability communities. 

WALTER:  If our listeners didn’t know much about ACL before, they sure do now. And wow, what an important role you play. And I think it’s really interesting that you said that you also have an advocacy role within the federal government. We, of course, that’s our full-time job here at the National Committee — advocating for seniors and their earned benefits and their financial and health security. So thank you for doing what you do. I was curious what personal background you bring to this issue, especially relating to seniors. 

ALISON:  Yeah. So I’ve actually been involved in issues around community living literally my entire life. I have a sibling, an adult brother with intellectual disabilities who was born in the 1970s. And at that time, my family was told like every other family at that time that the best and only place for Evan was in an institution, not in the community. And it was right at the time there was no such thing as home and community based services at that time. And in fact, people may not know this, but it wasn’t until the late 1970s that people with disabilities had a right to a public education and that really changed everything. My family was part of that first group of families and Evan was really the first generation of kids who grew up in their own communities, being part of their family, attending public schools. I am always an advocate. Sometimes I am a bureaucrat. I call myself an “advocrat.” I’ve been in and out of the non-profit advocacy world and in government, all places where I have really been advocating using policy levers and legal levers all around community living and helping people be able to really live and fully participate in all aspects of life. 

WALTER:  What was the word? Advocrat.

ALISON:  Advocrat. I love it. Yeah. 

WALTER:  I think that was this morning’s Wordle word, I’m not sure. Okay, so speaking of words and definitions, let’s back up for a minute and can you help define what we mean by home and community-based services, which is HCBS as an acronym, which are provided through the Medicaid program? 

ALISON:  Sure. So when we think about the things that help people age in place and live in the community, many people need types of in-home supports. And I just want to say, especially because we have a lot of older adults listening:  I think a lot of people have a perception that these kind of supports are provided through private health insurance or Medicare. But guess what? The only program that really provides those is the Medicaid program. But when we’re talking about home and community-based services, what we really mean are those supports that help people live in their own homes, in their own communities. It could be things like someone coming into your home and providing you with home care or personal care services, helping with showering and toileting and cooking, and (other) things that sometimes people need help with. It can also be things that help people participate in the community. So someone that helps you go out and go shopping and do different activities. 

WALTER:  What, Alison, are some of the advantages of HCBS or home and community-based services over traditional nursing home care for seniors? 

ALISON:  So the first thing that’s really, really important is when you talk to older adults, when you talk to people with disabilities and you ask them, where would you like to receive services? The vast majority say, ‘I’d like to be in my own home. I’d like to be in my own community. I’d like to be surrounded by my family, by the people I love.’ And, you know, aging in place has really, really, really become the norm. 

WALTER:  Well, Alison, what do we say then to people in states that have more modest or less robust HCBS programs than some others? Is it fair that some states have more robust options than others? And is there anything we can do about that? 

ALISON:  So I’ll put on my advocate hat here and I’ll say without naming any states, I come from and my brother still lives in a state where they don’t have very robust investments in health care or human services. Evan waited on a waiting list for over a decade to get those supports that have helped him be able to live independently in the community. But what I’d say is a couple of things. Number one, advocacy, advocacy, advocacy and more advocacy. At the end of the day, if states and the federal government invest earlier and helping people live in their own homes and live in their own communities, they actually save money. It costs more to support people and institutions if we are helping people stay healthier, that decrease costs and other health care programs, whether it’s Medicare or Medicaid. And so, you know, the the data on why it’s cost effective is really important at the same time. And I can say this from my many years of being an advocate, sharing actual stories makes a difference. And so don’t just send the professional advocates up to the Hill with their fact sheet on cost savings. Do that. But also, it’s really important for people to share their stories, because what I’ve seen with, you know, public officials is probably every single person can relate to this issue. 

WALTER:  We support, of course, your administration, the Biden administration’s efforts, to do whatever it can from the regulatory standpoint. And the administration has been busy enacting rules to benefit seniors who need long term care. Talk about the recent Access rule from April and what it means for the home and community-based services space. It’s quite sweeping and even historic, isn’t it? 

ALISON:  I am so proud of the Medicaid Access rule as something ACL worked very closely with our partners at the Centers for Medicare and Medicaid Services. I’m going to use this quote that the head of the National Association of Medicaid Directors said when the rule came out. And I think she really captured this moment. “I think the Medicaid access rule is going to be seen as the moment where our long-term care system moved from home and community-based services as kind of the sideshow to the centerpiece of long-term care being home and community-based services.” We haven’t talked about it yet, but one big barrier to people getting home and community-based services is we need to have the workforce to provide services. We call them either direct care workers or direct support professionals, and we’ve really had a long-standing issue of these are incredibly important jobs, yet they’re not treated like that. They’re not paid well; there’s high turnover rates; they don’t get access to benefits. So one important thing that this regulation does is that for a set of home and community-based services, it says we need to make sure that what states are paying in reimbursement rates, the vast majority, 80%, is going to actual compensation of direct care workers, not overhead. That’s really, really fundamental. That’s a big pivot. The second thing is really about how people access services. So sometimes, you know, we were talking about people on waiting lists. Believe it or not, states until now have not had to report on how many people are sitting on waiting lists for home and community-based services. So for the first time, we are actually going to have information on waiting lists. Then we’ve also seen the fact that sometimes people get approved for services, but they can’t get it. So you get past the state waiting list, but then in effect, you’re on a waiting list at a provider. So states are going to have to start reporting on what percentage of the authorized hours are actually provided and how long did it take you to get those. 

WALTER:  Thank you for explaining the Access rule to us. And it is truly historic — and good for the Biden administration for getting that done. I don’t know if you can comment on this, but I thought I would ask. Can you comment on the efforts in Congress to kill the administration’s nursing home minimum staffing rule? 

ALISON:  Yeah, what I can say is that, this administration has been very clear that people need to get quality services and have their health and their safety protected, no matter where they are. And, you know, after what we saw in COVID, it’s incredibly important to make sure that people are safe no matter where they are. And that nursing home rule is really meant to do that, to make sure that there’s sufficient staffing, so people are getting their basic needs met and that people can be safe and healthy. 

WALTER:  And we’re running short on time, but I did want to ask you: we just finished Older Americans Month and this year’s theme was ‘powered by connection,’ what did that mean? And why is that idea so important to seniors? Briefly? 

ALISON:  We are just coming out of a time period where we truly have an epidemic around social isolation. And we know that connection is so important. It’s part of what we talked about, about why people want to live in the community instead of being in a nursing home. It’s because people get so much value from being connected with their friends, with their family, being part of community. It’s a way that we help keep people healthy. We help keep people safe is by making sure they’re known and that people really are seeing them — and around them. So it was an incredible month. We have a lot to celebrate in the incredible work that we’re doing to support older adults. People are living longer, they are living healthier, and we need to make sure that they are really living the lives that they want, connected in their own communities. And ACL is incredibly committed to doing that. 

WALTER:  And to that, we say, “Amen,” a big “amen!” I am kind of blown away by everything that ACL does. I learned a lot this afternoon, and I hope the listeners did, too. Keep up the good work, Alison, and thank you so much for being here. 

ALISON:  Thank you so much again for having me, and thanks for all you and all your listeners do. 

WALTER:  We appreciate that. And the watchword for today was “advocrat,” right? Advocacy and advocrats. 

ALISON:  I love it. 

WALTER:  Okay, thank you again, Alison. Thanks. Well, that’s a wrap. Thanks for listening. If you want some more great content on issues affecting American seniors, please visit ncpssm.org and subscribe to our morning newsletter for free. It’s called Your Morning Read, and our award-winning blog, Entitled to Know. Clever title, huh? Entitled, yeah. That’s ncpssm.org. Special thanks to our engineer, Super Shahab Shokoui, and our editor, Rhymin’ Simon Laslo Janssen. Till next time, I’m Walter Gottlieb, and remember, you earned this!