Including You: A Disability Rights Arkansas Podcast

Getting to Know HCBS (Home and Community Based Services)

• Disability Rights Arkansas • Season 3 • Episode 4

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What if I told you there was a time when people with disabilities were routinely hidden away in institutions, segregated from society with no meaningful options for living independently? In this eye-opening episode, DRA staff attorney Derek Henderson takes us on a journey through the evolution of disability rights and services, focusing on the game-changing system known as Home and Community-Based Services (HCBS).

Derek explains how shocking exposés of institutional abuse in the 1970s catalyzed a movement that led to landmark legislation protecting disability rights. Most crucially, he breaks down a Supreme Court decision that established a legal mandate: states must provide services allowing people with disabilities to live in their communities rather than institutions, or risk committing illegal discrimination. As Derek puts it, "It's not just some nice aspiration or goal, it's what is required."

But what do these services actually look like in practice? We explore the various supports available through HCBS, from direct care assistance with daily activities to access to medical care and cutting-edge assistive technologies. Derek walks through the differences between services for people with intellectual/developmental disabilities versus those with behavioral health needs, giving listeners a concrete understanding of what support is potentially available.

For anyone who's ever felt overwhelmed navigating the labyrinth of Medicaid services and appeals processes, this episode offers practical guidance. Derek shares self-advocacy strategies, explains how to appeal service denials, and emphasizes the critical importance of meeting appeal deadlines. As he compassionately reminds listeners who may feel lost in the complexity: "You are not alone. We are here to help."

Whether you're a person with a disability, a family member, an advocate, or simply someone interested in understanding disability rights better, this conversation provides crucial knowledge about a system designed to support community living and independence. 

Resources: https://disabilityrightsar.org/home-and-community-based-settings-hcbs-rule/ 

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Amber:

Welcome to Including you a podcast by Disability Rights Arkansas. On this podcast, we shine a light on the real everyday experiences of people with disabilities the challenges, triumphs and all the moments in between. At Disability Rights Arkansas, we're committed to providing guidance to people with disabilities on navigating their rights, tackling everyday issues and accessing the support they need in a complex world. In this podcast, including you, we bring that information directly to you, the listener. We'll cover topics like accessibility questions, building your career, securing the care you deserve and even navigating the nuances of love and relationships as a person with a disability, because everyone has the right to know their rights Everyone, including you. So, whether you're a seasoned advocate or someone just starting to think differently about disability, you're in the right place. I'm your host, amber Quaid, and together we'll explore how small, meaningful changes can make a big difference. Let's dive in. Today, our special guest is Derek Henderson, who's one of our attorneys here at Disability Rights Arkansas. I'll let him talk a little bit more about it, but thank you for being here, derek.

Derek:

Thank you for having me. I know how weird this sounds. I always like getting together and talking about Medicaid and so I hope it's helpful to some people. I'm one of the staff attorneys here at Disability Rights DRA is what you'll hear me call that for short. I've been here three years and I do a few different types of cases for us. We'll talk about the HCBS and Medicaid, but I also do some cases with guardianships and that is helping people who don't want to be in a guardianship. I do some education cases and I actually used to be a teacher, so it's kind of an area that's close to my heart. And I also do a few cases every now and then where I try to help people get some medical records or other court records sealed to try to protect that medical privacy. But most of what I do here is Medicaid helping people who receive waiver services through Medicaid.

Amber:

So I've heard you say the words HCBS and this whole thing is about HCBS. But let's start of what is HCBS?

Derek:

Yeah, and that's a loaded question. That's a big one. Just what it is is home and community based services HCBS that's obviously a mouthful, so we'll just keep saying HCBS. If I were standing in front of an audience and I do this actually in some presentations I won't be able to know that acronym, and so a lot of times I'll actually have people repeat after me home and community based services, and so that's not something that you need to do, but it's such an integral term home and community based services that anyone really involved with Medicaid needs to be familiar with it involved with Medicaid needs to be familiar with it.

Amber:

Okay, so if we say home and community-based services, or HCBS, same item, I get that Okay. Now, that in itself sounds self-explanatory, but I'm pretty sure there's a little bit more we need to talk about this. You want to explain some of that?

Derek:

Of course and unfortunately it's such a big topic we may find ourselves kind of going in circles to fill in gaps on some things, and this is not something that, you know anyone can possibly wrap their head around in 45 minutes or an hour. It really, you know, took me probably my first two years to get a strong grip on this, and I'm still always learning new things because it changes and you have to change with it. So, what it is HCBS? These are services that people need so they can live independently in their communities. Services you need so you can live outside of an institutional setting, because unfortunately, that is what people had before HCBS were available.

Amber:

Okay, and that's a little bit. What I was wondering about next is like where does the home and community-based services come from? Like, why does this exist? Why do we have this?

Derek:

Yeah, so unfortunately, for many, many years, we know, you know, people with disabilities have always lived and been part of our societies and for many, many years, for centuries, um, the model for people with disabilities was segregation. It was a model of we don't know how to fit you into the society we have, we don't know how to change that society and so we're going to exclude you from it. And that, especially over the past couple of hundred years, really evolved or devolved into institutional placements. And when I say institutions, we're not talking good things, we're talking segregated settings where people were not given segregated settings, where people were not given meaningful interactions, meaningful opportunities in their communities, meaningful education, and that was what people had. It's tragic how many generations have been lost to that, but you know it was how things were dealt with for a long time, because people with disabilities did not have effective ways of asserting their rights.

Amber:

Okay.

Derek:

One of the problems, of course, with institutions is we segregate people, we hide them away. Well, good things don't normally happen in secrecy. Good things don't normally happen when we put things in a dark place. And so there was rampant abuse, neglect. It was beyond just mere segregation. Let me change that. That's when we have abuse and neglect develop. Let me change that. That's when we have abuse and neglect develop. It was beyond just segregating people. There was active abuse and neglect in these facilitiess. When there was a special by a little New York reporter named Geraldo Rivera and he got into an institution to do an expose, it was called Willowbrook, and Willowbrook really shocked the conscience of the nation and Congress. It made the problem inescapable, it made it visible and we as a result created organizations like DRA to try to prevent and address that kind of abuse and neglect. But that also began, kind of, I think, a new era of consciousness on the rights of people with disabilities.

Amber:

So that's kind of what I'm thinking about now is that all of this has come to the public's attention. We see that there's this abuse and the mistreatment, but how did we get to where we are today? Like, there's still quite a bit of time, and I don't hopefully I don't see that Geraldo report every day happening with that expose. So what now? What was happening between then and now?

Derek:

Yeah, that was a tremendously active time in a lot of ways. In the 70s you had a huge surge in awareness and willingness to address the issues of people with disabilities. One of those was in education. That's when we started having special education laws. One of them was with the Rehabilitation Act and having regulations to implement that Rehabilitation Act. By the way this is just a personal little recommendation One little documentary movie on Netflix. If you have not seen Crip Camp, it is just absolutely phenomenal. Before I started working here, it really opened my eyes to a lot of history behind some of these movements and it focuses in specifically on making the jump from the Rehab Act and the regulations then all the way to 1990 with the ADA, the Americans with Disabilities Act. So for the first time we have a lot of legal protection and clear laws and regulations that spell out the rights and the things that people with disabilities are entitled to get as members of society.

Amber:

Basically, if I just like zoned out there, because that was a lot of information, it really was. But can you just like summarize that or give that to us and just like one or two sentences, so that way, if people forget everything else in the last couple of questions, that they can just come down and be like, ok, that's what I should take away from this.

Derek:

Yes, and you just asked that sentence perfectly. Let me go back real quick and say one more thing. Now, after all those laws, there was one more big thing, and this is a whole talk in itself to have. But in the 90s there was a Supreme Court case that interpreted the ADA and it basically said that segregating people with disabilities who can and who want to live in their communities, that constitutes discrimination against people with disabilities under the ADA. And so the HCBS thing, it's not just, you know, some nice aspiration or goal, it's what is required. It's not just something that states or governments can say, you know, well, we'll see about doing that later. They're legally required to do it and you know courts have interpreted the law to say that that is what the law tells us. So as far as big picture, all of that I boil down to basically, if a person has a disability and they can and they want to live in the community with services, the state has to make those services available, or that could constitute illegal discrimination against that person.

Amber:

So basically, what you're saying is that there are services that help a person stay in their community instead of going to an institution.

Derek:

That's exactly what HCBS are, and the only thing that I've probably left out of that is yes, those are services to help you stay in your community. That's the goal, but the fact is some people have gone to institutional settings who maybe should not have, but they are there and there is still this obligation of the state to help that person explore community-based options and decide if they want to re-enter the community. And so HCBS have to be there, not just for people who are trying to avoid the first instance of institutionalization, but also for people who want to leave institutionalization. So it's supposed to help with avoiding it and re-entering from it, if that makes sense.

Amber:

I think that makes sense. I really do so. That just gets me a little more curious. Now, of course, instead of like summing up the big picture in a few sentences now, I want to dig a little deeper. I guess then, just because this can sound like it's a little bit confusing because we have the institutions and now we have the HCBS, so are we saying that like we just need to close these institutional settings and kind of get everyone more towards the HCBS, or are we just saying close them down and good luck, I hope you find a solution in your community? How are we kind of going with that?

Derek:

Yeah, that's absolutely not what the law says. I want to be very clear on that. I am not saying shut everything down. I am not saying that the law says that, because that is not what is in the law and sometimes that gets mischaracterized. But I am absolutely not representing the law to say that there can be no institutions.

Derek:

The key is that there have to be options for people, there have to be services out there, and when I say for people, one thing I need to mention is I'm talking about choices for the person with disabilities, not choices for his or her family to make, not choices for the state to make in, you know, some kind of guardian role or something.

Derek:

But these need to be choices of the individual and even if the person has a guardian, the guardian needs to be actively talking with the person about their options and helping that person to get into the kind of settings that they want to be in, and I think that there's support for that idea not only in the federal integration mandate but also in state guardianship law. People are supposed to be in the least restrictive arrangements that they can be, and so absolutely not. You know, it's not an issue of shutting down institutions, it's an issue of giving people options and when people understand they have options, most of them want to be in their communities. They want to be near family and friends and they want to be active. They don't want to be warehoused and they don't want to be, you know, just put into some kind of meaningless work in a workshop or something like that. They want real options and they want some real social connection in their communities.

Amber:

I agree. I mean, who would not want to be connected and live in the community with which, like their family and everyone they know, and love and trust is a part of? And so I get what you're saying about the supports and what those supports are supposed to accomplish. But let's be honest what do they really look like?

Derek:

Yeah, and some people probably have been just waiting for the moment that I would say. What are they? I'll tell you. First of all, there are Medicaid manuals in Arkansas. If you search Arkansas Medicaid manuals on the internet, it's really easy to find, and then there's a whole litany of them I think probably about 50 different Medicaid manuals which I do not recommend reading. But there is one specifically that addresses home and community-based services and it just for the person who you know who needs to see, that I want you to know. It's out there. It literally goes through line by line and it has a code for all of the services and all of that and that may be something you know, that would help somebody.

Derek:

Now, for me, kind of the most representative service that I see people using and you hear people talk about the most, it's called supportive living services and what that is. It's not rocket science. It's when people with disabilities have certain needs while they live in the community, like mobility assistance, bathing, food preparation, assistance with getting out into the communities. When they need that kind of assistance, they can get a supportive living staff member to come and give direct care. Now, that has to be approved through Medicaid, but for many, many people who would fit into this HCBS group. That's going to be approved, it's going to be available for them. So getting those direct care staff to help with daily needs, direct care staff to help with daily needs, activities of daily living, that is a big part of it.

Derek:

But HCBS also includes probably some less obvious stuff. For example, it includes access to your doctors, it includes access to specialists, access to medication, access to hospitals if you need that, access to assistive technology, and that could be assistive technology like for mobility, like a wheelchair, or it could also be assistive technology such as remote monitoring, and Arkansas is taking some steps toward some higher level technology like that. I don't know where things are with that exactly, but there's a lot of potential. I've seen some uses in other states where there can be ongoing, touchless medical monitoring of a person so they don't even have to bother with having another person in their home watching them, talking to them all the time. They can just have that level of monitoring and assistance through remote means, and I think that there's a lot that hopefully we'll explore in this state in the next few years, because I think that opens up a lot of possibilities for people with various disabilities.

Derek:

One thing I need to mention, amber, is when we talk about HCBS, there are two main groups that use that. There are people with intellectual and developmental disabilities and there are people with behavioral health needs. The intellectual and developmental disabilities, idd that is what we often call waiver services, and so that is one of the major HCBS populations Behavioral health, major HCBS populations, behavioral health these are people who have serious behavioral and psychiatric health needs, who live in their communities and they just need some ongoing assistance and care to continue to do that. And so those two groups may have very different needs, and so the things that might be approved for a person who is in the IDD group might be very different from what is needed and approved for a person in the behavioral health group.

Amber:

Okay, with all these services and opportunities available, what happens if a person feels like he or she are not getting what they believe they are entitled to?

Derek:

So that's kind of where I come in. But I don't want to, probably representing a lot of people and happy to do it, but I was probably representing a lot of people who still had some very good self-advocacy options in front of them. So I want to kind of set the stage. Like you know, I'm going to talk about what I as an advocate and do for people in these situations, but I also want to talk about what people can do from a self-advocacy standpoint. So if you live in Arkansas and you are receiving HCBS services, more than likely that means that you are a member of what we call a PASS. And if you live in Arkansas and you've heard the term PASS P-A-S-S-E you know exactly what I'm talking about. If you're not from Arkansas, that's what we call our managed care organizations in Arkansas.

Derek:

So if you're with one of those companies, then those companies make decisions about what is medically necessary for you and what alternatives you should consider, and they work actively with you to coordinate your care. When you feel that they are not doing what they're supposed to to help you access care, or if they were wrong to deny a certain service or item for you, you have rights to appeal. You can appeal that directly to the company and we have a nice little self-help kit on doing appeals and grievances as a self-advocate that you can reach out to us at info at disabilityrightsarorg and we would be happy to send that to you. That is available on our website also. Basically, if you feel like you're not getting what you need from your past, you have those options of an appeal or a grievance and there are differences between those. That is really, I think, explained in the self-help packet that we have. That is a whole other topic. If you need assistance in knowing the difference, then you certainly might want to reach out to our intake.

Derek:

But if you send that appeal or grievance to your past, they're required to answer it. Pass, they're required to answer it. They're not required to do what you ask of them, but they are required to at least answer it and explain why they're doing it. If you don't think that their decision is correct, after that you have the ability to actually appeal it to DHS. And one other thing I need to mention, amber, is if a person only has Medicaid but they're not with a pass in Arkansas, if they just have traditional direct from DHS Medicaid, then they would do their appeal directly to DHS.

Derek:

And the last thing I'll say on appeals is anytime you get a letter and it tells you they've denied something, there's usually going to be somewhere on the front or back of that page an address or a phone number or something that tells you who to appeal to, and it will also tell you within how many days of the letter. And that is very important that you pay attention to the date on the letter and how many days they say you have, because that might close the door permanently on being able to do something about that. That might close the door permanently on being able to fix something that you think they need to correct.

Amber:

So appeal, and appeal in a timely manner.

Derek:

Absolutely that. That that is worth, like writing on the wall the way you just said it Appeal and appeal in a timely manner, because if you're not timely you cannot appeal and appeal in a timely manner, because if you're not timely you cannot appeal.

Amber:

If people have questions about this or concerns, they're always more than welcome to call Disability Rights Arkansas right.

Derek:

Yes, we have wonderful intake advocates who can take your issue and they know exactly who to give it to to get it addressed in the best way.

Derek:

Because the truth is I used to get so many direct calls and I loved dealing with the issues and I may not have been the best person to deal with some of those issues.

Derek:

They can get those issues to the best people to help you and as much as possible, we always want to try to encourage and support self-advocacy.

Derek:

I try to be a lot more sparing in how many cases I take on directly, not only because of how it affects time and workload and the ability to represent people, but also because we have so many effective and strong self-advocates and family advocates in the state that I really think we owe it to them to help people develop and grow in those areas. And so that's what we've tried to do with some of the resources we've developed and given to people to make for lack of a better term an army of self-advocates who can address these issues, because I'm one person and I have to accept that and acknowledge that there's only so much I can get done. But if we have that effective fighting force, so to speak, who can all bring effective grievances and appeals on issues. That means that we can really start to affect some systemic change. Because when the companies or Medicaid or DHS are just hearing from me, it's just me. When they're hearing from 50 different angles at once, it's a lot harder to ignore the systemic issues.

Amber:

Okay so making notes, self-advocacy, then color intake specialist, then, if needed, then your services are provided. I think I can stay in mind that.

Derek:

Yes, and when we talk about self-advocacy, if there are any questions about that, absolutely reach out to our info email or absolutely reach out to our intake number, because we absolutely can provide information and support on self-advocacy.

Amber:

It's been lovely talking to you, but before I wrap this up I want to give you the opportunity. Is there anything in our discussion that you think I missed about HCBS?

Derek:

Amber, I don't think I have any big substance to give on it. I think I just will reiterate what I said earlier, that I came into this with a law degree and a lot of adult experience and I was completely lost in this world. When I started here, I had no idea what any of it was. They may feel just as lost, but then they're faced with the prospect of having to find their bearings while they're still living their lives, and I just want anybody to know if you feel lost on this, that is not an unusual reaction. If it feels overwhelming, that is not unusual. The thing that I don't want anybody to feel is alone on this. We are here, and if we are not able or if we don't think that we are best suited to assist you at a certain time, then we at least may be able to get you to some resources that can, and so please just don't feel alone on this and don't be scared. You know extra. I guess you know weirded out. Don't be overwhelmed by how overwhelmed you are, it's normal.

Amber:

I think that was well said. You're not alone. We're here to help. But well, thank you so much for your time today, derek. We appreciate you talking to us about HCBS and all the parts so many parts that go along with it. So thank you for your time and to our audience, thank you for joining us on Including you. We hope today's conversation has sparked ideas, offered guidance or inspired you to take action in your own life and community. Guidance or inspired you to take action in your own life and community.

Amber:

At Disability Rights, we believe advocacy isn't always about sweeping reforms. It's about the small, everyday actions like asking the right questions, standing up when something feels wrong or helping to create a space where everyone feels included. If today's episode resonated with you, visit us at disabilityrightsarorg to learn more about your rights, access resources and find ways to get involved. But don't forget to follow us on social media for updates, tips and stories from the disability community. If you enjoyed this episode, share it with a friend, leave us a review or start a conversation, because that's where change begins. Remember, everyone deserves to know their rights Everyone, including you. Until next time. I'm Amber Quaid and we'll talk with you again soon.

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Amber Quaid

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Jaime Gardner

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