ANCOR Links: Season 1, Episode 9

Gabrielle Sedor

I am so delighted to welcome my colleague and my friend Alison Barkoff to today’s conversation. She is currently serving as the principal deputy administrator for the Administration for Community Living, and she has been in that role since 2021. But Alison is also a sibling. She has a fantastic brother, who happens to have an intellectual disability. She is a civil rights attorney. She has been part of countless coalitions and has certainly been in the same room as ANCOR on many, many occasions. I think, Alison, I think I met you when you were back with the Bazelon Center for Mental Health Law. She’s also worked with the Department of Justice. Alison, you’ve been an advocate for people with disabilities for so, so long. Tell us a little bit about your current role at the Administration for Community Living and what you do there.

Alison Barkoff

Great. First of all, thanks so much for having me on. And back at you, I have loved working alongside ANCOR for many decades. And as you mentioned, I am a longtime disability advocate, doing both disability law and disability policy for my entire career and of course, personally for many, many decades. And it was a real privilege to join the Biden-Harris administration on the first day of the administration to come and lead the Administration for Community Living. And for people who aren’t familiar with the Administration for Community Living or ACL, as we call it for short. We’re a federal agency in the US Department of Health and Human Services. And our mission is to ensure that all people, regardless of disability, regardless of age, regardless of level of support need, have opportunities to fully participate in all aspects of community life. And we do that in a couple of ways. First, we fund a network of disability and aging organizations, we have about $2.6 billion, that’s a “b” billion for those of you and nonprofits, it’s been really interesting going from the nonprofit world to leading a federal agency, where we have disability and aging programs that are in every state, and in most communities, implemented through about 20,000, community-based organizations, everything from providing direct services, to legal advocacy to systems change advocacy. And for those of you who might be familiar, some names you might hear in your community are things like Centers for Independent Living or Area Agencies on Aging, or Developmental Disabilities Councils, Protection and Advocacy agencies. So that’s one big piece of what we do. We also fund research, including around disability and independent living through a part of ACL called the National Institute on Disability Independent Living and Rehabilitation Research. And the last thing that I think is really, really important is that we serve as the Adviser to the Secretary of HHS, on disability and aging policy. And that means we do a number of things. First of all, we have to engage stakeholders, we hear from a whole range of people with disabilities and older adults and their families and providers and state agencies. And that really informs what we do, and is really relevant to our conversation today. We really work across all of HHS, and across the federal government to make sure that the needs of people with disabilities, and older adults are part of all kinds of policy, from health care, to housing, to education, to employment.

Gabrielle Sedor

That collaboration, and those conversations that happen between departments and agencies, is so, so important. And really, when it does happen, that’s when we see amazing things like the Housing and Services Resource Center, which I really want to dig into. And when it doesn’t happen, that’s when the real challenges arise. So you and I both see the challenges that people with intellectual and developmental disabilities, and their staff, frankly, have in finding accessible and affordable housing. So how did you come up with and how did you think it through? What was the reasoning behind the Housing and Services Resource Center?

Alison Barkoff

Gabrielle, it’s exactly what you said. It’s all about partnership and collaboration. This is actually my third time in the federal government. And the last time I was in, in the Obama administration, one of the things that I saw was, as you mentioned, I was at the Department of Justice, really doing systems change work focusing on helping states change systems to ensure that people with disabilities could be part of the community. And to do that we had to develop partnerships. You know, at DOJ, we had kind of the civil rights laws to really push. But in order to really make it work, I had to develop partnerships, for example, with the US Department of Housing and Urban Development, with HUD, partnerships with HHS and the Centers for Medicare and Medicaid Services. And I saw that when we really work to bring those resources together, by partnering at the federal level, and then bringing that partnership to state and local levels, we were really able to make a difference. So one of the first things that I did when I joined ACL at the beginning of the administration was I reached out to a colleague of mine that I actually worked with in the Obama administration. He’s an expert on housing. And the first thing we said it was, as you might remember, rewind your mind back to 2021. We are in the middle of COVID, there was a lot of supplemental funding coming in, you know, for services, for housing. And we knew that this was a really critical moment in time to make sure that all of the housing networks knew how to work together with their state Medicaid agency with their aging and disability networks. And that is where the idea of the Housing and Services Resource Center came about it was really, we need to show partnership, we need to leverage every single resource out there, we need to show how to use a little bit of a wonky word. Sometimes we say words like braid and blend resources. So to think about how we all have money and resources and ways that we help them kind of find a way that at the local level, we’re all serving the same people. So how do we work towards our shared goals. And that was really the idea behind the Housing and Services Resource Center.

Gabrielle Sedor

I love that. And I also love that if you Google Housing and Resource Center, it’s one of the first things that comes up. So it is relatively easy to find. But for those of you who are writing things down, if you go to acl.gov/HousingAndServices, that’s how you’ll get there. Did I get that full link right?

Alison Barkoff

You did. acl.gov/HousingAndServices.

Gabrielle Sedor

So, if you’re curious about all the things we’re talking about, and want to see it as we’re having a chat, please feel free to go there and share it with your friends and your family members and whoever else might be interested. And that’s actually a good question, Alison, who is the Housing and Services Resource Center for?

Alison Barkoff

So we really thought about the fact that there are a lot of different multiple audiences here one thing when you go to that webpage, we really tried to organize, pulling together for the first time, resources from across the federal government. In one place, if you’re looking for how do we coordinate around housing and services, we really tried to put in there for different networks. Are you looking for how do you work together with aging and disability networks? And actually, who they are? How do you work, for example, on homelessness issues? And what is a homeless continuum of care? What’s your state public housing authority, so we really tried to organize it in a way that made sense. We are and I think, kind of uniquely in the federal government trying to think about state and local systems change and partnerships. So a primary audience for us really are those agencies that are involved in serving people. Of course, that includes things like the state Medicaid agency, the State Unit on Aging, the state disabilities agency, but it also includes, you know, things like the continuum of care, providers of home and community-based services, centers for independent living, area agencies on aging. So we’ve really tried to think about who are all of the key players, we are primarily focused on systems change, but we know that there have to be resources for individual people. So we did put together a link on this page. If you are looking for either services or housing, who can we connect you with? So this website is not “I need housing, help me find housing,” but it is “I need housing, who are the people in my own community and state that can help me?” So multiple audiences here. A lot of resources, I will mention that if you go to that webpage, you can actually sign up for a listserv. We share information, we do publications, I know we’re going to talk in a minute about the webinars that we do that are really focused on a lot of different audiences. and lifting up innovations and best practices and ways to solve problems. So if you are interested in housing, this is a place for you. And I’ll just say kind of taking a step back, you know, this partnership is so important to what ACL does, as I mentioned, our mission is about making sure people can live and participate in the community. And oftentimes, you know, we think about home and community-based services as everything where it’s at, we focus so much on services. But for so many older adults and people with disabilities, to make Community Living real, it’s not just access to services, it is actually affordable, accessible, integrated housing, that’s so critical. And sometimes these systems aren’t coordinated. So you might have someone who has access to home and community-based services, maybe they have a waiver, but they are in a nursing home or other institution, not because they can’t get the services. But because there’s a lack of housing, and they’re not getting connected to housing. Or sometimes we have someone who is in housing, and you know, maybe that housing isn’t accessible. And that becomes the reason that they’re at risk of going into an institutional setting. Or sometimes we have someone whose needs are changing, they own their own home, but they really need some in-home services and supports, and are at risk of having to leave their home. That’s incredibly common, for example, as people are trying to age in place, and might have, you know, disabilities, other impacts coming on. So for us, we just knew that partnership, that coordination, and lifting up the both/and, was so critical to our mission at ACL around community living.

Gabrielle Sedor

So Alison, so many things about what you just said, speak to me, someone with an aging mother, all of the boxes that you just checked resonate with me, because I’m looking for those things for her as well. And how to fund it. So, I love the idea of the subscription option that people can access through the Housing Resource Center, because sometimes my days are so filled. And even with the best of intentions, I forget what’s out there on the big, wide Internet. So having information come to me is something that I really value and really appreciate. You mentioned, you know, your focus on local and state systems change. And one thing that’s actually been really exciting to see in the last couple of years, is to see some community service providers, and even some families get really, really creative about shaping new housing opportunities for people with disabilities. Sometimes they’re partnering with developers other times trying to convert properties that they’ve inherited or transform older properties of different historical uses into apartments or other housing units. It’s just a wide array of things that are that are happening. Can the Housing Resource Center be a place for others who wants to explore options like that, to find information and tools about how to go about it?

Alison Barkoff

Yes, yes, yes. And yes. Like you were really, really excited to see the way that there’s a lot of housing innovations, a lot of new partnerships, a lot of ways that people are thinking about leveraging a whole range of funding, whether it’s Medicaid or Medicare or Older Americans Act funding or leveraging case management that can be got through HUD resources, and really doing this mixing and matching to look at what is it that people need to really, really be supported well in their own communities. So we do a lot of lifting up what these innovations look like. Most of our webinars are actually about that kind of thing, bringing in different models, bringing in different providers or developers, sharing what it looks like. It is always critical to us as ACL, as I mentioned, we are about the actual people. So we also like to make sure that we’re hearing from people who are living in those communities. You know about the barriers they face, what they like about it, why this is really different. There’s so much happening in the aging space. And we’ve been lifting that up. I think there’s a lot that’s happening, for example, in the space around people with mental health disabilities, I think in the behavioral health world, they’ve really been much further along in a lot of ways and developing supported housing models. One thing I’m really excited about and I know that ANCOR does a lot in the space with people with intellectual developmental disabilities and as you mentioned, I come from that world. And for too long, the only options for people with in short, we often say people with I/DD has been either to live in their family home for their entire life, even as adults to live with their parents, or to live in a group home. There haven’t been a lot of opportunities for people to be supported to live in their own home, to live in an apartment complex that might have set aside of, of apartments that are extremely affordable and have access to services, but that are in a mainstream apartment building where they have opportunities to interact with the broader community. And I’m really excited that last year because this was a place where we felt like there was so much work to be done and some really cool stuff happening. We did a three-part series, lifting up new housing models for people with intellectual developmental disabilities. We record all of our webinars, you can go back and actually a recording of the webinars and the slides would be really great. We did everything from hearing from federal agencies like HUD, and the Centers for Medicare and Medicaid Services, and others about what are the resources out there and how can they be used. We had a webinar called Beyond Group Homes, how states have successfully worked on developing housing for people with I/DD where we heard about some really, really great models. And then we had a third webinar focused on innovators, and really sharing those. So that’s just one example of the kinds of things that you can see, again, we have it broken up in lots of different ways. If you’re looking at what are some of the coolest models out there to help older people age in place, or, you know, what is kind of best practice around accessibility for affordable housing, we have, and home modifications, for example, for someone with a physical disability or someone who’s aging and has limitations. We have all of those resources. So yes, we are all about innovations, and really trying to lift those up in a really diverse way.

Gabrielle Sedor

I love that. I also noticed on the Resource Center, there’s this portion called the housing and services partnership accelerator, like I love that word accelerator all about action verbs here at ANCOR. So if I click on that button, what am I going to find?

Alison Barkoff

So I’m really excited about this when we launched this partnership between HHS and HUD about two years ago, we really, really had this vision of, Okay, we’re gonna start with helping our networks get to know each other and really starting to leverage what’s out there. This housing and services partnership accelerator is actually built off an idea that many years ago, there was a declaration the Year of Community Living, it became the many years of community living where there was a really intense focus on expanding community services. And again, I had been in the administration and working and CMS, the Centers for Medicare and Medicaid Services, partnered and did the series of accelerator programs, and one of them was around housing. Again, it’s been a decade—a whole lot of things have changed. And in some ways, CMS is part of this partnership with the Housing and Services Resource Center, as well as a number of HHS agencies. And we said, Let’s do another accelerator. Let’s do it based on some of the new things now. And there are two pieces to this. So what we often call social determinants of health has been a real priority for this administration. What that means is, that health is not just about going to the doctor and getting traditional health care, people’s health is impacted by a lot of things, including access to housing. Think about people who are homeless or at risk of homelessness and the dramatic impact that has on their health. So, there’s been a lot of focus on how can we fund these pieces that are really relevant to health, and the Centers for Medicare and Medicaid Services, which are over both the Medicare and Medicaid programs, have used a lot of new authorities, Medicaid authorities to give states these new innovative opportunities to fund health-related social needs, including housing related services. We now have 16 states that are using these authorities to be able to work together not just on providing traditional Medicaid services, but these housing-related services through these special we call them 1115 waivers or 1959 state plans. Those are the ways that states can come into CMS and say we want to do this cool thing and they get permission to do it. So we said, you know what, these states now have these cool things that they can do. But we want to help support them to make it really effective. And we know that like the state Medicaid agencies sometimes need help in partnering and understanding the housing system, the homelessness system, the aging and disability partners. And so we were excited to put out an opportunity for states to apply, states that already have an approved opportunity. So the universe was 16 states to do an intensive technical assistance, where we are bringing in experts, and this is like a nine-month boots on the ground, we will help you implement it, and then take lessons learned and share it broadly. So very soon, we will be announcing the states that will be awarded this opportunity. It’s something that we’ve done in a couple of other different contexts. And it really is taking it from the big picture to the nuts and bolts, and then taking those lessons learned and sharing it broadly. So really excited about this opportunity. We’re jointly funding it between ACL and HUD, and the Substance Abuse Mental Health Services Administration. I will say that almost all of these have been very interested in addressing issues of people who are homeless, or at risk of homelessness, which are disproportionately people with disabilities, and a growing number of older adults. So it’s really an area where we’re really excited, much, much more to come on the housing and services partnership accelerator, but I’m really excited to really be able to dig in with states and turn this into reality.

Gabrielle Sedor

That is great news. And it sounds like some of our ANCOR Links, listeners just got a little nugget, a little heads-up. Some information that will soon be late-breaking. So stay tuned to hear whether or not your state will be part of the accelerator program in this next phase. Alison, the technical assistance component is such a critical piece of it, you know, because I think we all agree, in theory, that like yes, of course, people with disabilities, especially people with I/DD should have more options than living with their parents, or, you know, as a sibling, I have a lot of friends that are thinking about what happens when my sibling comes to live with me. Or having to be in a group home that may or may not fit with their personality and their needs. So, hearing about what we can do at the state level at the local level, and facilitating that at the federal level, I’m really just really happy to be in partnership with you and ACL to do that. So speaking of technical assistance, there’s so much on the Housing and Services Resource Center. And I know you mentioned it’s not a place where you go, I need housing, get me a house. But is there a number that people can call to help them with various activities? What if they’re not good at navigating a website and aren’t quite sure where to go to get the resources that you and I have been talking about? Is there somebody to talk to through the Resource Center?

Alison Barkoff

Not directly about the resource center, taking a step back, you know, we have found it’s really, really important for people to know how to connect with local resources that help them with community living. That, of course, includes being able to connect if you need help with finding housing resources. So we were really excited. Also, during the time that I’ve been here, we were able to initially start it with some supplemental funding that we got during the COVID pandemic. And for the first time ever, we for a long time have had a national hotline that connected people to our aging resources, called the eldercare locator. But we didn’t ever have anything similar on the disability side. So it’s been about 18 months, but we launched what we call the Disability Information and Access Line, or DIAL. And DIAL is a place we have a website, we have a number we’ve been working on expanding kind of all the resources there that you can call, and it can help connect you with local resources. We first started this during the pandemic to really help people who are looking for how to get a COVID vaccine? How do I get a test? So, you know, I need these additional services. You know, I’ve lost services because of COVID. How do I you know, get connected somewhere? And we saw there was a huge need just outside of COVID, you know, just in general to connect people with their local Center for Independent Living, who might be able to connect them with housing resources, just as an example or if they have a legal issue to connect them with their local Protection and Advocacy agency. So, we have two ways that you can get in touch with DIAL, there is a phone number that you can call or text and it’s 1-888-677-1199. Or if you can use the internet, it’s a great resource available 24/7. And it’s at acl.gov/dial. So a great place where they can connect you again, these are trained operators, you tell them what your issues are, and where you live, and then they can connect you with local resources. So that’s another way that we are really trying to do both/and we are about systems change, we are about making a big difference. And we know that individual people need help. And that’s really important for us to be doing too.

Gabrielle Sedor

Thank you so much for sharing that resource. So again, listeners acl.gov/dial. So Alison, in addition to everything that we’ve already talked about, you also mentioned webinars. Some are, or they’re all free, right?

Alison Barkoff

They are.

Gabrielle Sedor

Okay, and how can people know where to go? How to find out what’s happening as far as webinars offered by the Administration for Community Living? And can you give us an idea of some of the topics?

Alison Barkoff

Sure. So in addition to the work that I talked about, with the Housing and Services Resource Center, which again, webinars and all of those materials, if you go to the webpage that we talked about earlier, acl.gov/HousingAndServices, you can sign up there, you can click on what’s new, you can see about upcoming webinars, that actually ACL does a lot focused on issues, of course, more broadly than just housing, a whole range of things around aging and disability. We do a lot focused on things, for example, like social isolation, or accessible transportation, or direct care workforce issues, or how to support family caregivers. We have a lot of webinars. But we also have a lot of other materials. In fact, every other week, we try to do a roundup of policies that are coming out from across the federal government that might be of interest to the aging and disability community. So a new regulation that just came out, for example, from the Centers for Medicare and Medicaid Services, and we try to explain what it means, or something new that came out from the Department of Labor around disability employment, we kind of do this roundup for people. So if you are interested in any of those things, if you go to acl.gov, you can actually sign up for our listserv, and get information about all of these kinds of things. So acl.gov, click on to sign up for our listserv. And you can get information about webinars, about new policies coming out and a whole lot more around Aging and Disability.

Gabrielle Sedor

As a recipient of all of those emails, I truly do value them. And I like knowing what’s going on. And it’s also for me, someone who’s focused on policy at a federal level, it’s a nice window into knowing what the Administration is focusing on and what they’re caring about. And it’s really nice to see that aligned a lot of the time. Is there anything that I forgot to ask you that you want to be sure that our listeners hear today?

Alison Barkoff

I just appreciate the opportunity to share this. I’m sure people can hear from my enthusiasm that, you know, ACL is all about partnerships. And I think our work together across HHS and with the US Department of Housing and Urban Development has been just such a great example of what can happen when we lead and show what partnership looks like. And then it trickles down to the state and local levels. We are very interested in making sure that the whole wide range of stakeholders who care about aging and disability feel like our resources are relevant, and are giving them the information they need. So there are lots of ways on our websites for you to give us feedback. And I really, really appreciate this opportunity to talk with you about housing because as I said, you know, our mission is to make sure all people have that ability and that right to live and fully participate in their communities. And we always think about all the pieces that are part of it access to services and accessible affordable housing and transportation and education and employment. And we do work in all those places. So I would love to come back and talk to you about our partnerships and those many other places. But I think it’s really important for us we see ourselves as kind of the glue of working together and making sure that all the incredible work that happens across the federal government, that the communities that we serve are really, really thought about and included in policies.

Gabrielle Sedor

And we thank you for that. And thank you so much for your time today on this snowy, snowy day here in the DC area. And Alison, thank you for everything that you do to support independence and accessibility to quality services, particularly for people with intellectual and developmental disabilities. So, I thank you, I thank all the members of your team and I can’t wait for our next chat.

Alison Barkoff

Great, thank you.