April 4, 2025 • 30 mins
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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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Amber (00:00):
Welcome to Including you a podcast by Disability Rights
Arkansas.
On this podcast, we shine alight on the real everyday
experiences of people withdisabilities the challenges,
triumphs and all the moments inbetween.
At Disability Rights Arkansas,we're committed to providing
guidance to people withdisabilities on navigating their
(00:22):
rights, tackling everydayissues 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 likeaccessibility questions,
building your career, securingthe care you deserve and even
(00:44):
navigating the nuances of loveand relationships as a person
with a disability, becauseeveryone has the right to know
their rights Everyone, includingyou.
So, whether you're a seasonedadvocate or someone just
starting to think differentlyabout disability, you're in the
right place.
I'm your host, amber Quaid, andtogether we'll explore how
(01:06):
small, meaningful changes canmake a big difference.
Let's dive in.
Today, our special guest isDerek Henderson, who's one of
our attorneys here at DisabilityRights Arkansas.
I'll let him talk a little bitmore about it, but thank you for
being here, derek.
Derek (01:23):
Thank you for having me.
I know how weird this sounds.
I always like getting togetherand talking about Medicaid and
so I hope it's helpful to somepeople.
I'm one of the staff attorneyshere at Disability Rights DRA is
what you'll hear me call thatfor short.
I've been here three years andI do a few different types of
(01:44):
cases for us.
We'll talk about the HCBS andMedicaid, but I also do some
cases with guardianships andthat is helping people who don't
want to be in a guardianship.
I do some education cases and Iactually used to be a teacher,
so it's kind of an area that'sclose to my heart.
(02:05):
And I also do a few cases everynow and then where I try to
help people get some medicalrecords or other court records
sealed to try to protect thatmedical privacy.
But most of what I do here isMedicaid helping people who
receive waiver services throughMedicaid.
Amber (02:28):
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 (02:39):
Yeah, and that's a loaded question.
That's a big one.
Just what it is is home andcommunity based services HCBS
that's obviously a mouthful, sowe'll just keep saying HCBS.
If I were standing in front ofan audience and I do this
actually in some presentations Iwon't be able to know that
(03:01):
acronym, and so a lot of timesI'll actually have people repeat
after me home and communitybased services, and so that's
not something that you need todo, but it's such an integral
term home and community basedservices that anyone really
involved with Medicaid needs tobe familiar with it involved
(03:29):
with Medicaid needs to befamiliar with it.
Amber (03:30):
Okay, so if we say home and community-based services, or
HCBS, same item, I get thatOkay.
Now, that in itself soundsself-explanatory, but I'm pretty
sure there's a little bit morewe need to talk about this.
You want to explain some ofthat?
Derek (03:44):
Of course and unfortunately it's such a big
topic we may find ourselves kindof going in circles to fill in
gaps on some things, and this isnot something that, you know
anyone can possibly wrap theirhead around in 45 minutes or an
(04:06):
hour.
It really, you know, took meprobably my first two years to
get a strong grip on this, andI'm still always learning new
things because it changes andyou have to change with it.
So, what it is HCBS?
These are services that peopleneed so they can live
(04:32):
independently in theircommunities.
Services you need so you canlive outside of an institutional
setting, because unfortunately,that is what people had before
HCBS were available.
Amber (04:49):
Okay, and that's a little bit.
What I was wondering about nextis like where does the home and
community-based services comefrom?
Like, why does this exist?
Why do we have this?
Derek (05:01):
Yeah, so unfortunately, for many, many years, we know,
you know, people withdisabilities have always lived
and been part of our societiesand for many, many years, for
centuries, um, the model forpeople with disabilities was
(05:22):
segregation.
It was a model of we don't knowhow to fit you into the society
we have, we don't know how tochange that society and so we're
going to exclude you from it.
And that, especially over thepast couple of hundred years,
really evolved or devolved intoinstitutional placements.
(05:49):
And when I say institutions,we're not talking good things,
we're talking segregatedsettings where people were not
given segregated settings, wherepeople were not given
meaningful interactions,meaningful opportunities in
their communities, meaningfuleducation, and that was what
(06:13):
people had.
It's tragic how manygenerations have been lost to
that, but you know it was howthings were dealt with for a
long time, because people withdisabilities did not have
effective ways of assertingtheir rights.
Amber (06:35):
Okay.
Derek (06:36):
One of the problems, of course, with institutions is we
segregate people, we hide themaway.
Well, good things don'tnormally happen in secrecy.
Good things don't normallyhappen when we put things in a
dark place.
And so there was rampant abuse,neglect.
(06:57):
It was beyond just meresegregation.
Let me change that.
That's when we have abuse andneglect develop.
Let me change that.
(07:19):
That's when we have abuse andneglect develop.
It was beyond just segregatingpeople.
There was active abuse andneglect in these facilitiess.
When there was a special by alittle New York reporter named
Geraldo Rivera and he got intoan institution to do an expose,
it was called Willowbrook, andWillowbrook really shocked the
(07:39):
conscience of the nation andCongress.
It made the problem inescapable, it made it visible and we as a
result created organizationslike DRA to try to prevent and
address that kind of abuse andneglect.
(08:00):
But that also began, kind of, Ithink, a new era of
consciousness on the rights ofpeople with disabilities.
Amber (08:10):
So that's kind of what I'm thinking about now is that
all of this has come to thepublic's attention.
We see that there's this abuseand the mistreatment, but how
did we get to where we are today?
Like, there's still quite a bitof time, and I don't hopefully
I don't see that Geraldo reportevery day happening with that
(08:33):
expose.
So what now?
What was happening between thenand now?
Derek (08:38):
Yeah, that was a tremendously active time in a
lot of ways.
In the 70s you had a huge surgein awareness and willingness to
address the issues of peoplewith disabilities.
One of those was in education.
(08:59):
That's when we started havingspecial education laws.
One of them was with theRehabilitation Act and having
regulations to implement thatRehabilitation Act.
By the way this is just apersonal little recommendation
One little documentary movie onNetflix.
(09:21):
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 ofthese movements and it focuses
in specifically on making thejump from the Rehab Act and the
regulations then all the way to1990 with the ADA, the Americans
(09:45):
with Disabilities Act.
So for the first time we have alot of legal protection and
clear laws and regulations thatspell out the rights and the
things that people withdisabilities are entitled to get
as members of society.
Amber (10:07):
Basically, if I just like zoned out there, because that
was a lot of information, itreally was.
But can you just like summarizethat or give that to us and
just like one or two sentences,so that way, if people forget
everything else in the lastcouple of questions, that they
can just come down and be like,ok, that's what I should take
away from this.
Derek (10:26):
Yes, and you just asked that sentence perfectly.
Let me go back real quick andsay one more thing.
Now, after all those laws,there was one more big thing,
and this is a whole talk initself to have.
But in the 90s there was aSupreme Court case that
interpreted the ADA and itbasically said that segregating
(10:53):
people with disabilities who canand who want to live in their
communities, that constitutesdiscrimination against people
with disabilities under the ADA.
And so the HCBS thing, it's notjust, you know, some nice
aspiration or goal, it's what isrequired.
(11:16):
It's not just something thatstates or governments can say,
you know, well, we'll see aboutdoing that later.
They're legally required to doit and you know courts have
interpreted the law to say thatthat is what the law tells us.
So as far as big picture, allof that I boil down to basically
(11:39):
, if a person has a disabilityand they can and they want to
live in the community withservices, the state has to make
those services available, orthat could constitute illegal
discrimination against thatperson.
Amber (11:56):
So basically, what you're saying is that there are
services that help a person stayin their community instead of
going to an institution.
Derek (12:05):
That's exactly what HCBS are, and the only thing that
I've probably left out of thatis yes, those are services to
help you stay in your community.
That's the goal, but the factis some people have gone to
institutional settings who maybeshould not have, but they are
there and there is still thisobligation of the state to help
(12:30):
that person explorecommunity-based options and
decide if they want to re-enterthe community.
And so HCBS have to be there,not just for people who are
trying to avoid the firstinstance of institutionalization
, but also for people who wantto leave institutionalization.
(12:51):
So it's supposed to help withavoiding it and re-entering from
it, if that makes sense.
Amber (12:59):
I think that makes sense.
I really do so.
That just gets me a little morecurious.
Now, of course, instead of likesumming up the big picture in a
few sentences now, I want todig a little deeper.
I guess then, just because thiscan sound like it's a little
bit confusing because we havethe institutions and now we have
the HCBS, so are we saying thatlike we just need to close
(13:23):
these institutional settings andkind of get everyone more
towards the HCBS, or are we justsaying close them down and good
luck, I hope you find asolution in your community?
How are we kind of going withthat?
Derek (13:34):
Yeah, that's absolutely not what the law says.
I want to be very clear on that.
I am not saying shut everythingdown.
I am not saying that the lawsays that, because that is not
what is in the law and sometimesthat gets mischaracterized.
But I am absolutely notrepresenting the law to say that
(13:58):
there can be no institutions.
The key is that there have to beoptions for people, there have
to be services out there, andwhen I say for people, one thing
I need to mention is I'mtalking about choices for the
person with disabilities, notchoices for his or her family to
(14:19):
make, not choices for the stateto make in, you know, some kind
of guardian role or something.
But these need to be choices ofthe individual and even if the
person has a guardian, theguardian needs to be actively
talking with the person abouttheir options and helping that
(14:41):
person to get into the kind ofsettings that they want to be in
, and I think that there'ssupport for that idea not only
in the federal integrationmandate but also in state
guardianship law.
People are supposed to be inthe least restrictive
arrangements that they can be,and so absolutely not.
(15:05):
You know, it's not an issue ofshutting down institutions, it's
an issue of giving peopleoptions and when people
understand they have options,most of them want to be in their
communities.
They want to be near family andfriends and they want to be
(15:25):
active.
They don't want to bewarehoused and they don't want
to be, you know, just put intosome kind of meaningless work in
a workshop or something likethat.
They want real options and theywant some real social
connection in their communities.
Amber (15:43):
I agree.
I mean, who would not want tobe connected and live in the
community with which, like theirfamily and everyone they know,
and love and trust is a part of?
And so I get what you're sayingabout the supports and what
those supports are supposed toaccomplish.
But let's be honest what dothey really look like?
Derek (16:03):
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 areMedicaid manuals in Arkansas.
If you search Arkansas Medicaidmanuals on the internet, it's
(16:24):
really easy to find, and thenthere's a whole litany of them I
think probably about 50different Medicaid manuals which
I do not recommend reading.
But there is one specificallythat addresses home and
community-based services and itjust for the person who you know
who needs to see, that I wantyou to know.
(16:44):
It's out there.
It literally goes through lineby line and it has a code for
all of the services and all ofthat and that may be something
you know, that would helpsomebody.
Now, for me, kind of the mostrepresentative service that I
see people using and you hearpeople talk about the most, it's
(17:07):
called supportive livingservices and what that is.
It's not rocket science.
It's when people withdisabilities have certain needs
while they live in the community, like mobility assistance,
bathing, food preparation,assistance with getting out into
the communities.
(17:27):
When they need that kind ofassistance, they can get a
supportive living staff memberto come and give direct care.
Now, that has to be approvedthrough Medicaid, but for many,
many people who would fit intothis HCBS group.
That's going to be approved,it's going to be available for
them.
So getting those direct carestaff to help with daily needs,
(17:58):
direct care staff to help withdaily needs, activities of daily
living, that is a big part ofit.
But HCBS also includes probablysome less obvious stuff.
For example, it includes accessto your doctors, it includes
access to specialists, access tomedication, access to hospitals
if you need that, access toassistive technology, and that
(18:21):
could be assistive technologylike for mobility, like a
wheelchair, or it could also beassistive technology such as
remote monitoring, and Arkansasis taking some steps toward some
higher level technology likethat.
I don't know where things arewith that exactly, but there's a
(18:44):
lot of potential.
I've seen some uses in otherstates where there can be
ongoing, touchless medicalmonitoring of a person so they
don't even have to bother withhaving another person in their
home watching them, talking tothem all the time.
They can just have that levelof monitoring and assistance
(19:07):
through remote means, and Ithink that there's a lot that
hopefully we'll explore in thisstate in the next few years,
because I think that opens up alot of possibilities for people
with various disabilities.
One thing I need to mention,amber, is when we talk about
HCBS, there are two main groupsthat use that.
(19:30):
There are people withintellectual and developmental
disabilities and there arepeople with behavioral health
needs.
The intellectual anddevelopmental disabilities, idd
that is what we often callwaiver services, and so that is
one of the major HCBSpopulations Behavioral health,
(19:57):
major HCBS populations,behavioral health these are
people who have seriousbehavioral and psychiatric
health needs, who live in theircommunities and they just need
some ongoing assistance and careto continue to do that.
And so those two groups mayhave very different needs, and
so the things that might beapproved for a person who is in
the IDD group might be verydifferent from what is needed
(20:18):
and approved for a person in thebehavioral health group.
Amber (20:22):
Okay, with all these services and opportunities
available, what happens if aperson feels like he or she are
not getting what they believethey are entitled to?
Derek (20:41):
So that's kind of where I come in.
But I don't want to, probablyrepresenting a lot of people and
happy to do it, but I wasprobably representing a lot of
people who still had some verygood self-advocacy options in
front of them.
So I want to kind of set thestage.
Like you know, I'm going totalk about what I as an advocate
(21:05):
and do for people in thesesituations, but I also want to
talk about what people can dofrom a self-advocacy standpoint.
So if you live in Arkansas andyou are receiving HCBS services,
more than likely that meansthat you are a member of what we
call a PASS.
(21:26):
And if you live in Arkansas andyou've heard the term PASS
P-A-S-S-E you know exactly whatI'm talking about.
If you're not from Arkansas,that's what we call our managed
care organizations in Arkansas.
So if you're with one of thosecompanies, then those companies
(21:47):
make decisions about what ismedically necessary for you and
what alternatives you shouldconsider, and they work actively
with you to coordinate yourcare.
When you feel that they are notdoing what they're supposed to
to help you access care, or ifthey were wrong to deny a
certain service or item for you,you have rights to appeal.
(22:11):
You can appeal that directly tothe company and we have a nice
little self-help kit on doingappeals and grievances as a
self-advocate that you can reachout to us at info at
disabilityrightsarorg and wewould be happy to send that to
you.
That is available on ourwebsite also.
(22:34):
Basically, if you feel likeyou're not getting what you need
from your past, you have thoseoptions of an appeal or a
grievance and there aredifferences 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 inknowing the difference, then you
(22:56):
certainly might want to reachout to our intake.
But if you send that appeal orgrievance to your past, they're
required to answer it.
Pass, they're required toanswer it.
They're not required to do whatyou ask of them, but they are
required to at least answer itand explain why they're doing it
.
If you don't think that theirdecision is correct, after that
(23:18):
you have the ability to actuallyappeal it to DHS.
And one other thing I need tomention, amber, is if a person
only has Medicaid but they'renot with a pass in Arkansas, if
they just have traditionaldirect from DHS Medicaid, then
they would do their appealdirectly to DHS.
(23:44):
And the last thing I'll say onappeals is anytime you get a
letter and it tells you they'vedenied something, there's
usually going to be somewhere onthe front or back of that page
an address or a phone number orsomething that tells you who to
appeal to, and it will also tellyou within how many days of the
(24:07):
letter.
And that is very important thatyou pay attention to the date
on the letter and how many daysthey say you have, because that
might close the door permanentlyon being able to do something
about that.
That might close the doorpermanently on being able to fix
something that you think theyneed to correct.
Amber (24:30):
So appeal, and appeal in a timely manner.
Derek (24:34):
Absolutely that.
That that is worth, likewriting on the wall the way you
just said it Appeal and appealin a timely manner, because if
you're not timely you cannotappeal and appeal in a timely
manner, because if you're nottimely you cannot appeal.
Amber (24:47):
If people have questions about this or concerns, they're
always more than welcome to callDisability Rights Arkansas
right.
Derek (25:03):
Yes, we have wonderful intake advocates who can take
your issue and they know exactlywho to give it to to get it
addressed in the best way.
Because the truth is I used toget so many direct calls and I
loved dealing with the issuesand I may not have been the best
person to deal with some ofthose issues.
They can get those issues to thebest people to help you and as
much as possible, we always wantto try to encourage and support
(25:24):
self-advocacy.
I try to be a lot more sparingin how many cases I take on
directly, not only because ofhow it affects time and workload
and the ability to representpeople, but also because we have
so many effective and strongself-advocates and family
(25:49):
advocates in the state that Ireally think we owe it to them
to help people develop and growin those areas.
And so that's what we've triedto do with some of the resources
we've developed and given topeople to make for lack of a
(26:10):
better term an army ofself-advocates who can address
these issues, because I'm oneperson and I have to accept that
and acknowledge that there'sonly so much I can get done.
But if we have that effectivefighting force, so to speak, who
can all bring effectivegrievances and appeals on issues
.
That means that we can reallystart to affect some systemic
(26:32):
change.
Because when the companies orMedicaid or DHS are just hearing
from me, it's just me.
When they're hearing from 50different angles at once, it's a
lot harder to ignore thesystemic issues.
Amber (26:50):
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 (27:01):
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 outto our intake number, because we
absolutely can provideinformation and support on
(27:22):
self-advocacy.
Amber (27:24):
It's been lovely talking to you, but before I wrap this
up I want to give you theopportunity.
Is there anything in ourdiscussion that you think I
missed about HCBS?
Derek (27:32):
Amber, I don't think I have any big substance to give
on it.
I think I just will reiteratewhat I said earlier, that I came
into this with a law degree anda lot of adult experience and I
was completely lost in thisworld.
When I started here, I had noidea what any of it was.
(27:57):
They may feel just as lost, butthen they're faced with the
prospect of having to find theirbearings while they're still
living their lives, and I justwant anybody to know if you feel
(28:18):
lost on this, that is not anunusual reaction.
If it feels overwhelming, thatis not unusual.
The thing that I don't wantanybody to feel is alone on this
.
We are here, and if we are notable or if we don't think that
we are best suited to assist youat a certain time, then we at
(28:39):
least may be able to get you tosome resources that can, and so
please just don't feel alone onthis and don't be scared.
You know extra.
I guess you know weirded out.
Don't be overwhelmed by howoverwhelmed you are, it's normal
.
Amber (28:59):
I think that was well said.
You're not alone.
We're here to help.
But well, thank you so much foryour time today, derek.
We appreciate you talking to usabout HCBS and all the parts so
many parts that go along withit.
So thank you for your time andto our audience, thank you for
joining us on Including you.
We hope today's conversationhas sparked ideas, offered
(29:20):
guidance or inspired you to takeaction in your own life and
community.
Guidance or inspired you totake action in your own life and
community.
At Disability Rights, we believeadvocacy isn't always about
sweeping reforms.
It's about the small, everydayactions like asking the right
(29:41):
questions, standing up whensomething feels wrong or helping
to create a space whereeveryone feels included.
If today's episode resonatedwith you, visit us at
disabilityrightsarorg to learnmore about your rights, access
resources and find ways to getinvolved.
But don't forget to follow uson social media for updates,
tips and stories from thedisability community.
(30:01):
If you enjoyed this episode,share it with a friend, leave us
a review or start aconversation, because that's
where change begins.
Remember, everyone deserves toknow their rights Everyone,
including you.
Until next time.
I'm Amber Quaid and we'll talkwith you again soon.
Welcome to Including you a podcast by Disability Rights
Arkansas.
On this podcast, we shine alight on the real everyday
experiences of people withdisabilities the challenges,
triumphs and all the moments inbetween.
At Disability Rights Arkansas,we're committed to providing
guidance to people withdisabilities on navigating their
(00:22):
rights, tackling everydayissues 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 likeaccessibility questions,
building your career, securingthe care you deserve and even
(00:44):
navigating the nuances of loveand relationships as a person
with a disability, becauseeveryone has the right to know
their rights Everyone, includingyou.
So, whether you're a seasonedadvocate or someone just
starting to think differentlyabout disability, you're in the
right place.
I'm your host, amber Quaid, andtogether we'll explore how
(01:06):
small, meaningful changes canmake a big difference.
Let's dive in.
Today, our special guest isDerek Henderson, who's one of
our attorneys here at DisabilityRights Arkansas.
I'll let him talk a little bitmore about it, but thank you for
being here, derek.
Derek (01:23):
Thank you for having me.
I know how weird this sounds.
I always like getting togetherand talking about Medicaid and
so I hope it's helpful to somepeople.
I'm one of the staff attorneyshere at Disability Rights DRA is
what you'll hear me call thatfor short.
I've been here three years andI do a few different types of
(01:44):
cases for us.
We'll talk about the HCBS andMedicaid, but I also do some
cases with guardianships andthat is helping people who don't
want to be in a guardianship.
I do some education cases and Iactually used to be a teacher,
so it's kind of an area that'sclose to my heart.
(02:05):
And I also do a few cases everynow and then where I try to
help people get some medicalrecords or other court records
sealed to try to protect thatmedical privacy.
But most of what I do here isMedicaid helping people who
receive waiver services throughMedicaid.
Amber (02:28):
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 (02:39):
Yeah, and that's a loaded question.
That's a big one.
Just what it is is home andcommunity based services HCBS
that's obviously a mouthful, sowe'll just keep saying HCBS.
If I were standing in front ofan audience and I do this
actually in some presentations Iwon't be able to know that
(03:01):
acronym, and so a lot of timesI'll actually have people repeat
after me home and communitybased services, and so that's
not something that you need todo, but it's such an integral
term home and community basedservices that anyone really
involved with Medicaid needs tobe familiar with it involved
(03:29):
with Medicaid needs to befamiliar with it.
Amber (03:30):
Okay, so if we say home and community-based services, or
HCBS, same item, I get thatOkay.
Now, that in itself soundsself-explanatory, but I'm pretty
sure there's a little bit morewe need to talk about this.
You want to explain some ofthat?
Derek (03:44):
Of course and unfortunately it's such a big
topic we may find ourselves kindof going in circles to fill in
gaps on some things, and this isnot something that, you know
anyone can possibly wrap theirhead around in 45 minutes or an
(04:06):
hour.
It really, you know, took meprobably my first two years to
get a strong grip on this, andI'm still always learning new
things because it changes andyou have to change with it.
So, what it is HCBS?
These are services that peopleneed so they can live
(04:32):
independently in theircommunities.
Services you need so you canlive outside of an institutional
setting, because unfortunately,that is what people had before
HCBS were available.
Amber (04:49):
Okay, and that's a little bit.
What I was wondering about nextis like where does the home and
community-based services comefrom?
Like, why does this exist?
Why do we have this?
Derek (05:01):
Yeah, so unfortunately, for many, many years, we know,
you know, people withdisabilities have always lived
and been part of our societiesand for many, many years, for
centuries, um, the model forpeople with disabilities was
(05:22):
segregation.
It was a model of we don't knowhow to fit you into the society
we have, we don't know how tochange that society and so we're
going to exclude you from it.
And that, especially over thepast couple of hundred years,
really evolved or devolved intoinstitutional placements.
(05:49):
And when I say institutions,we're not talking good things,
we're talking segregatedsettings where people were not
given segregated settings, wherepeople were not given
meaningful interactions,meaningful opportunities in
their communities, meaningfuleducation, and that was what
(06:13):
people had.
It's tragic how manygenerations have been lost to
that, but you know it was howthings were dealt with for a
long time, because people withdisabilities did not have
effective ways of assertingtheir rights.
Amber (06:35):
Okay.
Derek (06:36):
One of the problems, of course, with institutions is we
segregate people, we hide themaway.
Well, good things don'tnormally happen in secrecy.
Good things don't normallyhappen when we put things in a
dark place.
And so there was rampant abuse,neglect.
(06:57):
It was beyond just meresegregation.
Let me change that.
That's when we have abuse andneglect develop.
Let me change that.
(07:19):
That's when we have abuse andneglect develop.
It was beyond just segregatingpeople.
There was active abuse andneglect in these facilitiess.
When there was a special by alittle New York reporter named
Geraldo Rivera and he got intoan institution to do an expose,
it was called Willowbrook, andWillowbrook really shocked the
(07:39):
conscience of the nation andCongress.
It made the problem inescapable, it made it visible and we as a
result created organizationslike DRA to try to prevent and
address that kind of abuse andneglect.
(08:00):
But that also began, kind of, Ithink, a new era of
consciousness on the rights ofpeople with disabilities.
Amber (08:10):
So that's kind of what I'm thinking about now is that
all of this has come to thepublic's attention.
We see that there's this abuseand the mistreatment, but how
did we get to where we are today?
Like, there's still quite a bitof time, and I don't hopefully
I don't see that Geraldo reportevery day happening with that
(08:33):
expose.
So what now?
What was happening between thenand now?
Derek (08:38):
Yeah, that was a tremendously active time in a
lot of ways.
In the 70s you had a huge surgein awareness and willingness to
address the issues of peoplewith disabilities.
One of those was in education.
(08:59):
That's when we started havingspecial education laws.
One of them was with theRehabilitation Act and having
regulations to implement thatRehabilitation Act.
By the way this is just apersonal little recommendation
One little documentary movie onNetflix.
(09:21):
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 ofthese movements and it focuses
in specifically on making thejump from the Rehab Act and the
regulations then all the way to1990 with the ADA, the Americans
(09:45):
with Disabilities Act.
So for the first time we have alot of legal protection and
clear laws and regulations thatspell out the rights and the
things that people withdisabilities are entitled to get
as members of society.
Amber (10:07):
Basically, if I just like zoned out there, because that
was a lot of information, itreally was.
But can you just like summarizethat or give that to us and
just like one or two sentences,so that way, if people forget
everything else in the lastcouple of questions, that they
can just come down and be like,ok, that's what I should take
away from this.
Derek (10:26):
Yes, and you just asked that sentence perfectly.
Let me go back real quick andsay one more thing.
Now, after all those laws,there was one more big thing,
and this is a whole talk initself to have.
But in the 90s there was aSupreme Court case that
interpreted the ADA and itbasically said that segregating
(10:53):
people with disabilities who canand who want to live in their
communities, that constitutesdiscrimination against people
with disabilities under the ADA.
And so the HCBS thing, it's notjust, you know, some nice
aspiration or goal, it's what isrequired.
(11:16):
It's not just something thatstates or governments can say,
you know, well, we'll see aboutdoing that later.
They're legally required to doit and you know courts have
interpreted the law to say thatthat is what the law tells us.
So as far as big picture, allof that I boil down to basically
(11:39):
, if a person has a disabilityand they can and they want to
live in the community withservices, the state has to make
those services available, orthat could constitute illegal
discrimination against thatperson.
Amber (11:56):
So basically, what you're saying is that there are
services that help a person stayin their community instead of
going to an institution.
Derek (12:05):
That's exactly what HCBS are, and the only thing that
I've probably left out of thatis yes, those are services to
help you stay in your community.
That's the goal, but the factis some people have gone to
institutional settings who maybeshould not have, but they are
there and there is still thisobligation of the state to help
(12:30):
that person explorecommunity-based options and
decide if they want to re-enterthe community.
And so HCBS have to be there,not just for people who are
trying to avoid the firstinstance of institutionalization
, but also for people who wantto leave institutionalization.
(12:51):
So it's supposed to help withavoiding it and re-entering from
it, if that makes sense.
Amber (12:59):
I think that makes sense.
I really do so.
That just gets me a little morecurious.
Now, of course, instead of likesumming up the big picture in a
few sentences now, I want todig a little deeper.
I guess then, just because thiscan sound like it's a little
bit confusing because we havethe institutions and now we have
the HCBS, so are we saying thatlike we just need to close
(13:23):
these institutional settings andkind of get everyone more
towards the HCBS, or are we justsaying close them down and good
luck, I hope you find asolution in your community?
How are we kind of going withthat?
Derek (13:34):
Yeah, that's absolutely not what the law says.
I want to be very clear on that.
I am not saying shut everythingdown.
I am not saying that the lawsays that, because that is not
what is in the law and sometimesthat gets mischaracterized.
But I am absolutely notrepresenting the law to say that
(13:58):
there can be no institutions.
The key is that there have to beoptions for people, there have
to be services out there, andwhen I say for people, one thing
I need to mention is I'mtalking about choices for the
person with disabilities, notchoices for his or her family to
(14:19):
make, not choices for the stateto make in, you know, some kind
of guardian role or something.
But these need to be choices ofthe individual and even if the
person has a guardian, theguardian needs to be actively
talking with the person abouttheir options and helping that
(14:41):
person to get into the kind ofsettings that they want to be in
, and I think that there'ssupport for that idea not only
in the federal integrationmandate but also in state
guardianship law.
People are supposed to be inthe least restrictive
arrangements that they can be,and so absolutely not.
(15:05):
You know, it's not an issue ofshutting down institutions, it's
an issue of giving peopleoptions and when people
understand they have options,most of them want to be in their
communities.
They want to be near family andfriends and they want to be
(15:25):
active.
They don't want to bewarehoused and they don't want
to be, you know, just put intosome kind of meaningless work in
a workshop or something likethat.
They want real options and theywant some real social
connection in their communities.
Amber (15:43):
I agree.
I mean, who would not want tobe connected and live in the
community with which, like theirfamily and everyone they know,
and love and trust is a part of?
And so I get what you're sayingabout the supports and what
those supports are supposed toaccomplish.
But let's be honest what dothey really look like?
Derek (16:03):
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 areMedicaid manuals in Arkansas.
If you search Arkansas Medicaidmanuals on the internet, it's
(16:24):
really easy to find, and thenthere's a whole litany of them I
think probably about 50different Medicaid manuals which
I do not recommend reading.
But there is one specificallythat addresses home and
community-based services and itjust for the person who you know
who needs to see, that I wantyou to know.
(16:44):
It's out there.
It literally goes through lineby line and it has a code for
all of the services and all ofthat and that may be something
you know, that would helpsomebody.
Now, for me, kind of the mostrepresentative service that I
see people using and you hearpeople talk about the most, it's
(17:07):
called supportive livingservices and what that is.
It's not rocket science.
It's when people withdisabilities have certain needs
while they live in the community, like mobility assistance,
bathing, food preparation,assistance with getting out into
the communities.
(17:27):
When they need that kind ofassistance, they can get a
supportive living staff memberto come and give direct care.
Now, that has to be approvedthrough Medicaid, but for many,
many people who would fit intothis HCBS group.
That's going to be approved,it's going to be available for
them.
So getting those direct carestaff to help with daily needs,
(17:58):
direct care staff to help withdaily needs, activities of daily
living, that is a big part ofit.
But HCBS also includes probablysome less obvious stuff.
For example, it includes accessto your doctors, it includes
access to specialists, access tomedication, access to hospitals
if you need that, access toassistive technology, and that
(18:21):
could be assistive technologylike for mobility, like a
wheelchair, or it could also beassistive technology such as
remote monitoring, and Arkansasis taking some steps toward some
higher level technology likethat.
I don't know where things arewith that exactly, but there's a
(18:44):
lot of potential.
I've seen some uses in otherstates where there can be
ongoing, touchless medicalmonitoring of a person so they
don't even have to bother withhaving another person in their
home watching them, talking tothem all the time.
They can just have that levelof monitoring and assistance
(19:07):
through remote means, and Ithink that there's a lot that
hopefully we'll explore in thisstate in the next few years,
because I think that opens up alot of possibilities for people
with various disabilities.
One thing I need to mention,amber, is when we talk about
HCBS, there are two main groupsthat use that.
(19:30):
There are people withintellectual and developmental
disabilities and there arepeople with behavioral health
needs.
The intellectual anddevelopmental disabilities, idd
that is what we often callwaiver services, and so that is
one of the major HCBSpopulations Behavioral health,
(19:57):
major HCBS populations,behavioral health these are
people who have seriousbehavioral and psychiatric
health needs, who live in theircommunities and they just need
some ongoing assistance and careto continue to do that.
And so those two groups mayhave very different needs, and
so the things that might beapproved for a person who is in
the IDD group might be verydifferent from what is needed
(20:18):
and approved for a person in thebehavioral health group.
Amber (20:22):
Okay, with all these services and opportunities
available, what happens if aperson feels like he or she are
not getting what they believethey are entitled to?
Derek (20:41):
So that's kind of where I come in.
But I don't want to, probablyrepresenting a lot of people and
happy to do it, but I wasprobably representing a lot of
people who still had some verygood self-advocacy options in
front of them.
So I want to kind of set thestage.
Like you know, I'm going totalk about what I as an advocate
(21:05):
and do for people in thesesituations, but I also want to
talk about what people can dofrom a self-advocacy standpoint.
So if you live in Arkansas andyou are receiving HCBS services,
more than likely that meansthat you are a member of what we
call a PASS.
(21:26):
And if you live in Arkansas andyou've heard the term PASS
P-A-S-S-E you know exactly whatI'm talking about.
If you're not from Arkansas,that's what we call our managed
care organizations in Arkansas.
So if you're with one of thosecompanies, then those companies
(21:47):
make decisions about what ismedically necessary for you and
what alternatives you shouldconsider, and they work actively
with you to coordinate yourcare.
When you feel that they are notdoing what they're supposed to
to help you access care, or ifthey were wrong to deny a
certain service or item for you,you have rights to appeal.
(22:11):
You can appeal that directly tothe company and we have a nice
little self-help kit on doingappeals and grievances as a
self-advocate that you can reachout to us at info at
disabilityrightsarorg and wewould be happy to send that to
you.
That is available on ourwebsite also.
(22:34):
Basically, if you feel likeyou're not getting what you need
from your past, you have thoseoptions of an appeal or a
grievance and there aredifferences 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 inknowing the difference, then you
(22:56):
certainly might want to reachout to our intake.
But if you send that appeal orgrievance to your past, they're
required to answer it.
Pass, they're required toanswer it.
They're not required to do whatyou ask of them, but they are
required to at least answer itand explain why they're doing it
.
If you don't think that theirdecision is correct, after that
(23:18):
you have the ability to actuallyappeal it to DHS.
And one other thing I need tomention, amber, is if a person
only has Medicaid but they'renot with a pass in Arkansas, if
they just have traditionaldirect from DHS Medicaid, then
they would do their appealdirectly to DHS.
(23:44):
And the last thing I'll say onappeals is anytime you get a
letter and it tells you they'vedenied something, there's
usually going to be somewhere onthe front or back of that page
an address or a phone number orsomething that tells you who to
appeal to, and it will also tellyou within how many days of the
(24:07):
letter.
And that is very important thatyou pay attention to the date
on the letter and how many daysthey say you have, because that
might close the door permanentlyon being able to do something
about that.
That might close the doorpermanently on being able to fix
something that you think theyneed to correct.
Amber (24:30):
So appeal, and appeal in a timely manner.
Derek (24:34):
Absolutely that.
That that is worth, likewriting on the wall the way you
just said it Appeal and appealin a timely manner, because if
you're not timely you cannotappeal and appeal in a timely
manner, because if you're nottimely you cannot appeal.
Amber (24:47):
If people have questions about this or concerns, they're
always more than welcome to callDisability Rights Arkansas
right.
Derek (25:03):
Yes, we have wonderful intake advocates who can take
your issue and they know exactlywho to give it to to get it
addressed in the best way.
Because the truth is I used toget so many direct calls and I
loved dealing with the issuesand I may not have been the best
person to deal with some ofthose issues.
They can get those issues to thebest people to help you and as
much as possible, we always wantto try to encourage and support
(25:24):
self-advocacy.
I try to be a lot more sparingin how many cases I take on
directly, not only because ofhow it affects time and workload
and the ability to representpeople, but also because we have
so many effective and strongself-advocates and family
(25:49):
advocates in the state that Ireally think we owe it to them
to help people develop and growin those areas.
And so that's what we've triedto do with some of the resources
we've developed and given topeople to make for lack of a
(26:10):
better term an army ofself-advocates who can address
these issues, because I'm oneperson and I have to accept that
and acknowledge that there'sonly so much I can get done.
But if we have that effectivefighting force, so to speak, who
can all bring effectivegrievances and appeals on issues
.
That means that we can reallystart to affect some systemic
(26:32):
change.
Because when the companies orMedicaid or DHS are just hearing
from me, it's just me.
When they're hearing from 50different angles at once, it's a
lot harder to ignore thesystemic issues.
Amber (26:50):
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 (27:01):
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 outto our intake number, because we
absolutely can provideinformation and support on
(27:22):
self-advocacy.
Amber (27:24):
It's been lovely talking to you, but before I wrap this
up I want to give you theopportunity.
Is there anything in ourdiscussion that you think I
missed about HCBS?
Derek (27:32):
Amber, I don't think I have any big substance to give
on it.
I think I just will reiteratewhat I said earlier, that I came
into this with a law degree anda lot of adult experience and I
was completely lost in thisworld.
When I started here, I had noidea what any of it was.
(27:57):
They may feel just as lost, butthen they're faced with the
prospect of having to find theirbearings while they're still
living their lives, and I justwant anybody to know if you feel
(28:18):
lost on this, that is not anunusual reaction.
If it feels overwhelming, thatis not unusual.
The thing that I don't wantanybody to feel is alone on this
.
We are here, and if we are notable or if we don't think that
we are best suited to assist youat a certain time, then we at
(28:39):
least may be able to get you tosome resources that can, and so
please just don't feel alone onthis and don't be scared.
You know extra.
I guess you know weirded out.
Don't be overwhelmed by howoverwhelmed you are, it's normal
.
Amber (28:59):
I think that was well said.
You're not alone.
We're here to help.
But well, thank you so much foryour time today, derek.
We appreciate you talking to usabout HCBS and all the parts so
many parts that go along withit.
So thank you for your time andto our audience, thank you for
joining us on Including you.
We hope today's conversationhas sparked ideas, offered
(29:20):
guidance or inspired you to takeaction in your own life and
community.
Guidance or inspired you totake action in your own life and
community.
At Disability Rights, we believeadvocacy isn't always about
sweeping reforms.
It's about the small, everydayactions like asking the right
(29:41):
questions, standing up whensomething feels wrong or helping
to create a space whereeveryone feels included.
If today's episode resonatedwith you, visit us at
disabilityrightsarorg to learnmore about your rights, access
resources and find ways to getinvolved.
But don't forget to follow uson social media for updates,
tips and stories from thedisability community.
(30:01):
If you enjoyed this episode,share it with a friend, leave us
a review or start aconversation, because that's
where change begins.
Remember, everyone deserves toknow their rights Everyone,
including you.
Until next time.
I'm Amber Quaid and we'll talkwith you again soon.
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