Transcript of “Rights
Here, Rights Now – Episode 12: “COVID19”
Produced by the disAbility
Law Center of
Virginia.
[INTRO]: The
information provided on this podcast does not, and is not intended to,
constitute legal advice. Instead, all information, content and materials
available are for general informational purposes only.
Welcome to Rights Here, Rights Now, the podcast about disability,
advocacy, and activism. I’m your advocate host, Ren Faszewski
And I’m your advocate host, Virginia Pharis. Every two weeks, we
dig into relevant issues, current events, and avenues for self-advocacy.
‘Cause someone has to!
It might as well be us!
[REN]: Welcome
to Rights Here, Rights Now- The podcast about disability, advocacy, &
activism.
I'm your Advocate host, Ren
Faszewski.
[VIRGINIA]: And I'm your
Advocate host Virginia Pharis.
[REN]: So
Virginia, today we have something of a pretty special episode.
[VIRGINIA]: Yes. We
are-We're still recording remotely, but we were able to dial in the manager of
our *Communities* Unit, Erin Haw, who was one of my mentors when I first
started DLCV. She is awesome and she is
going to be talking to us a little bit about DLCV’s response to the covid-19
crisis. And what we’ve been doing that’s important for facilities.
[REN]: And obviously,
like, on our website, we’ve been doing updates for the virus as we get
information, but I think that this is good to kind of explain what DLCV is
doing with our advocacy work? And yeah, Erin who is advocate extraordinaire,
doing all the Community stuff- But VIRGINIA, you *forgot* that you’re supposed
to be talking to us about institutions!
[VIRGINIA]: [Laughter]
Yes, for better or for worse, I will be giving the institutions perspective, of
that Unit, and sort of what we’re doing to respond to the crisis, but- before
we jump in- let’s check out disability in the news.
Students in
Hasbrouck Heights New Jersey have taken online learning to a whole new level
recently. Over a dozen middle and high school students have been using 3D
printers while at home to create face masks for the areas local hospitals.
These students, all with disabilities, had been using 3D printers in the
classroom prior to the quarantine, but when schools in the area shut down
teachers had the great idea to deliver the 3D printers to the students homes.
Shane Miller, the STEM coordinator for the district, dropped off 3D printers at
over a dozen homes and gave quick tutorials to the families. Since then, students
have been printing masks all day every day for local hospitals and new 3D
printers have even been donated so more students can participate. New Jersey
Governor, Phil Murphy, applauded these students at a news conference recently,
expressing his gratitude for their selflessness acts during this time.
[REN]: All right! And
now, we’re ready to get into it. Thank you so much to Erin for joining us
today.
*ERIN HAW ENTERS*
[ERIN]: Hello! Thanks for having
me!
[REN]: It is always a
blessing to have one of the [our] most Senior and excellent advocates ever
enter into the podcast….zoom meeting?? Is that what we’re going to call it?
[Pause]
[REN]: [Continued] So, we have some really important
stuff that we’re going to talk about today. Let’s just dive right in. So, what
are some of these things, systemically, that DLCV is doing to track COVID 19
responses in the community?
[ERIN]: That’s a great question.
And we’re really focusing on a number of great efforts right now. The first big
one that I’ll highlight for you, is the one that we’re doing around our
[specific] CRIS DATABASE. For people who are listening and who maybe don’t know
what that is...Under state law, we have access to a lot of incident reports,
for people with all sorts of disabilities who live in *Licensed Residential
Settings* and also receive services from Licensed community based providers
like day programs and those sorts of things. And so, we have had this
information for a long time, and we do a lot of training and tracking around
these reports- for incidences or cases of abuse and neglect, for all kinds of
reports. Over the last few weeks we’ve really spent a lot of time developing a
more “COVID 19 focus” trending, tracking, analysis and follow up process. So
our wonderful CRIS team reviewers are identifying reports, um, in 3 broad
areas. The first one is going to be individuals in licensed programs who have
suspected COVID 19. And the other big area is going to be people who’ve
*confirmed* COVID 19, and the third big group that we’re kind of trending and
tracking are people who don’t *have* COVID 19, but the people who haven’t been
able to access services *because of* COVID 19. So, we’re tracking this data,
identifying patterns and trends whenever we can, and then we’ve also developed
a provider survey tool, which allows us to reach out to those providers that
are *having* the identified issues- so either, securing specific testing for
their residents, or specific issues within that community. Then, we ask them
[specifically] 1. What issues they’re having and 2. What might actually help
them resolve some of those issues, some of that. So, we’re still in the early
stages of those surveys, but those’ll be some good tools.
[REN]: Clearly, we’re
tracking it. Is there any sort of like- how people are responding to the
crisis? Or like, how providers are managing how the crisis is **happening**
within their facilities?
[ERIN]: I think that’s the piece
that we’re trying to get at with the provider services//surveys. So [for
instance] the incident reports that we get, a lot of times, with these
providers, are *REQUIRED* to report to the state. And it’s just like, “Hey,
Johnny was presenting with some symptoms...we took him to the doctor, and the
doctor diagnosed him with COVID 19.” Something like that.
And that doesn’t really help us to understand, that like,
well, where is the group home that Johnny resides, making sure that the other
residents are safe? Is the group home provider having trouble accessing PPE?
What are the bigger implications here that we should know about? And be doing
something about? Because we have a much more direct relationship of
communication to state leadership than some of these much smaller providers
have. So, again, we’re still in the early stages of the provider surveys, but I
think that’s going to be a really meaningful tool for us to have- it’s a better
understanding of what’s going on in the community and then follow up.
[REN]: Is there
particular areas...that we’re really trying to figure out about how they’re
being impacted? Like, I know that there’s been talk about “Telehealth” and
“Direct Testing-” And how that can impact the disability community??
[ERIN]: Absolutely!
Yes, that is something that we are looking at really closely, not just in the
context of the CRIS surveys, but in the overall service system. So, we are
aware that individuals who’re blind & some of our constituents who have
physical disabilities that might make it difficult say, for them to drive
themselves are having a hard time accessing the drive through testing sites,
and so, you know we’ve been exploring you know, what are the different
accommodations, that the sites need to *provide* to our constituents. And if,
the testing site for whatever reason isn’t going to be a viable option, then
what is the alternative. That should be provided to people. So something we’ve
heard about, that’s been happening to people, in some parts of the state is-
We don’t know
but we’re following up on this **more** is that local health departments and
different health care providers are going to people’s **homes** to offer
testing *there*. I think that, the problem right now is (at the time that we’re
recording this episode) is that there’s not a consistent, state-wide, practice
for that. And so, if one of our constituents is blind and isn’t able to drive,
and doesn’t have a family member that can drive them, then, Northern VA has a
provider that is willing to come to their house and test them? That’s great,
but then, say, does a similar situation exist for say, a constituent who lives
instead (say) in Southwest, VA? We are still exploring that, but it is a
concern. And on the Telehealth side, we, of course think Telehealth is a great
option for a lot of people right now, it helps to slow the spread of some of
those CV19 outbreaks, *but,* a number of our clients over the years have
struggled to obtain the needed effective communication accommodations, in
traditional doctor’s offices, and that is certainly something that could make
Telehealth challenging as well. So, basically, we still have our attorneys and
advocates providing individual case services to folks who might be calling in
to us. If somebody’s deaf and hard of hearing, and then needs an ASL INT. to
access their telehealth services or some kind of other effective communication
*and they aren’t getting that,* then they can contact our offices, for
basically, just foremost to know their rights, but also just so they aren’t
being denied, at least, their basic healthcare.
[Pause]
[VIRGINIA]: So Erin, I’ve been hearing some
rumblings about changes or, like, some, even **LACK OF** changes to like,
Medicaid Waivers, and Medicaid overall, that sort of thing. Can you tell us
what you know about that?
[ERIN]: Absolutely! And this is
something that is changing every day. So, I will encourage people that are
listening to this, that if you want the most up to date information, to please
check out our COVID 19 website. Check out our Facebook Page, or give us a call,
b/c the information I’m sharing right now, is what’s happening *NOW* at the
**time of recording.**
So, [um] Virginia, like a
number of other states, requested, very early on in this pandemic, some
flexibility around their Medicaid programs from the Federal Gov’t. And the
Federal Government approved that. So, right now, in Virginia, people who have
Medicaid, don’t have to pay any Co-pays for their medications. They aren’t at
risk of being **DISENROLLED** basically. For failing to send in a form. There’s
kind of a moratorium in place to make sure that people can have consistent
access to healthcare during the pandemic. So that’s great! And that benefits Medicaid
beneficiaries...generally. The area where we’re very concerned and where we’ve
done some sort of extra advocacy work, is around APPENDIX K. These are for our
home and community based service waivers. So in Virginia, we have a number of
what we call Medicaid waivers, that essentially offer an alternative to
Institutional Care. For people with disabilities. So we have a CCP+ Medicaid
Waiver, which is an alternative to Nursing Home Care, & then we have 3 DD
disabilities waivers, which are an alternative to what we call ICF, or
Intermediate Care Facilities. And these waivers are introduced by **thousands
and thousands** of Virginians, and a lot of these people, because they’ve
chosen these waivers, want to remain in their own homes, they want to remain
with their families, they wanna remain-- But to be able to do that *safely*
they need people who can come in and meet their needs. Whether that is related
to tube feedings, or medication administration, or people need to be coming
into their homes to work with them. But, the problem that we’re having right
now is that, understandably, a number of the people who are typically employed
to *provide* those services, either, themselves are sick, so they're having to
quarantine at home or not go anywhere, or are concerned about going into a lot
of different peoples’ **homes,** and then potentially picking something up in
those settings, and then potentially getting sick themselves, or their family
members getting sick. And so, you have a lot of individuals. And so you have a
lot of people with Medicaid waivers right now, wanting that flexibility and at
the same time, wanting to be with family, having that conversation about who
can be their paid caregiver, **during a pandemic** And Virginia can’t get that
permission (or grant that permission??) to CMS, which is our federal agency.
And unfortunately [again] Virginia has really been dragging their feet, as far
as getting that approval for Appendix K. So, how basically we ended, was that
the Governor, said he would do that as soon as possible. [Um] 25 States, have
actually already submitted and had their requests approved. So there’s really
no reason for Virginia to...to wait around on this any longer. Every day that
we go without those enhanced flexibility for Medicaid Waivers, they are at risk
at being placed in an institution. Which, I think, we’d all agree, is not a
great thing, at anytime! We would all agree. Right now, and I know we’ll get
into this later, on the institutional side of things, but right now, it is
very, very dangerous, to be in an institution. People are **VERY** at risk at
contracting COVID-19 in those settings!
[REN]: Yeah,
what-what...you’re saying makes a lot of sense! I’ve previously spoken on the
podcast that my niece is disabled and uses a CCC+ Waiver, and luckily half of
my family is quarantined right now so they have six adults! So they’re pretty
lucky in that regard, that right now they have a lot of hands on deck. But not
everybody’s like that. So I’m sure, um, a lot of our constituents are hoping
that we get an answer from the governor soon. Speaking of MONEY, obvi
everyone’s been talking about, you know, the stimulus checks, and all this
money that is supposed to be coming people’s way, and how is any of this
different? How is this going to affect any of our folks in this community?
[ERIN]: That’s such a
great question! And yet again that’s another area where the information is
trickling down from the federal to the state level everyday. So, again, um, if
you are listening to this, and you are worried about how a stimulus check might
affect **YOUR OWN** benefit, I would encourage you to reach out to us by phone,
or to check the resources on our website for the most current information.
Which we- as we know right now- we have resolved a couple of issues- we AS IN
THE COLLECTIVE we- have resolved a couple of issues that we knew were a problem
initially. So, a number of our constituents, who are on Medicaid, also receive
SSI benefits. And, because they receive
SSI benefits, they typically don’t file a FEDERAL TAX return. So there were
some initial concerns as: “Would they be included in the stimulus package at
all?” In fact, I think there were some updates to that. Just yesterday, there
were updates from the IRS and SSI about how people who don’t typically file a
tax return can get that money. So that’s good.
[Continued]
The concern, though, that it’s still in Virginia is around the
impact of enhanced unemployment insurance? On people’s benefits. Whether that
might be: an SSI benefit, a Medicaid benefit, a section 8 housing voucher
benefit, like all of these main tested services that are available, through a
combination of Federal and state programs...I think that *that’s the thing*
we’re still having to devote a lot of time and attention to, and it’s an
understanding-
[Continued]
If I need my Medicaid,
if I’m a person with a DD and I need my Medicaid, to remain in the community,
to remain **outside** the walls of an institution, and I’m employed- not
*gainfully employed* but employed, then what is that extra money going to do to
these other services that I really, really need?? So I don’t know if we have
great answers to that as of our recording today, but it’s something that we’re
actively tracking and will be looking into further. Thankfully, at least, my
understanding is that the stimulus checks are not going to be counted *FOR A
YEAR* as income, for people on SSI, or people who use SSI benefits, so that’s
good. But there’s just a few issues surrounding unemployment insurance that
we’re still figuring out.
[VIRGINIA]: So, within the communities Unit, are
y’all doing anything to mitigate the effects of, COVID 19 and COVID 19
precautions with the ability to access other services, like crisis services and
other medical services? Because I imagine those have been impacted a lot.
[ERIN]: Absolutely! We
have a fairly robust ADA practice. So as I mentioned earlier, individuals who
have a hard time accessing their health care services, because their health
care services are not accessible, we are able, in most of those cases, to
provide some short term assistance. For individuals who live in our community,
so like, individuals who reside in group homes, specifically, for example, who
might have some behavioral health support needs, have noticed that they might
not have the kind of *full, necessary, access that’s required at this time.*
And I think most people listening know this, but our services at DLCV are kind
of twofold. First, is the client advocacy, where we’re jumping into the
disability rights directly with a client, and going to meetings, and getting a
timely resolution to that issue. But then there’s this other sort of,
oversight, watchdog, investigative arm of what DLCV does. And so, for these
cases that we’re starting to hear about, through APS, through the CRIS
database, or from people just calling our office where people’s rights are
being violated and they’re not getting the services that they need. That that’s
being **harmed** in some way. That’s resulting in neglect, abuse, unnecessary
institutionalization. And every time that we do that, we obviously have the
person that we’re advocating for, like, **their best interests in mind** but
we’re also looking for that systemic angle as well. Where, if we can, use that
to get change and systemic angles across the board. That is what we have done and
what we’ll continue to do around this.
[Pause]
[REN]: Yeah. Certainly, this
situation highlights some of the fractures in the system that we’re already
aware about, but magnifying those issues. So, that’s a lot for communities, and
we’re developing this. And, you know, I’m sure we’re going to change and we’re
going to get updates in te future, but I’d say, let’s take a little step to the
left, and talk about how this is affecting folks in institutions. And so my
advocate host, Virginia Pharis will now be my interviewee, and Erin, feel free
to jump in as a host!!
[Shift]
[REN]: All right, so, Virginia, is dLCV still monitoring at these
places, institutions, during this outbreak?
[VIRGINIA]: Yes, absolutely yes. The way that we are
monitoring looks a little bit different than it did, you know, a month ago. We
are doing our best to keep our clientele safe by limiting in-person visits—
[REN]: Well, I know as
a member of this unit that there are other ways of contacting them. You know,
by phone, or speaking through a supervisor, that-
[VIRGINIA]: Well, yeah! We see the leadership of
DLCV be met with the leadership of DVBS (??). Um. That talk about hospital
monitoring and to explain our access and authority, and **demand** that we have
continued access to the large institutions. We’re not visitors, we’re
advocates. And, we do still have ways to maintain access to our clientele. For
instance, um, we can set up video calls with our clients within the
institutions, we are OF COURSE accepting phone calls, and you know, I would
encourage anyone who knows a situation with a person with a disability to, you
know, DON’T ASSUME. Because, there is more to monitor than ever with this going
on.
[REN]: So, you know, I
know that we **definitely** want people to continue to reach out to us during
this time. But, you know, I’m sure there are a lot of people who would ask:
*Why?* You know, why is it still important that we have access to institutions
during this time??
[VIRGINIA]: Well, first and foremost, peoples’
rights don’t stop just because there’s a global pandemic happening. People’s
rights may look a little bit different, but, laws are still in place, human
regulations are still in place, and folks with disabilities should still be
able to exercise their rights, even during these strange and unprecedented times.
Additionally, folks in congregations- institutions- are at a MUCH HIGHER RISK
for COVID-19 specifically in these spaces. Like, you can’t use the practice of
social distancing in a place like that, where it may be too isolating-- you
know, to get within 6 feet of somebody else, and you know, the day room is only
12 feet wide.
[Wow.]
[REN]: Hmmm, yep.
[VIRGINIA]: And you know, we have to make sure,
even under these circumstances, that institutions are making access to these
rights as easy as possible!
[REN]: Since, you know, since these pandemic measures and
Quarantine measures started, is- you know- is-are there specific issues that
DLCV has been seeing, you know, in these institutions?
[VIRGINIA]: Yeah, you
know, there’ve been blimps that we’ve had to- you know, there was an issue at
one state hospital where you know, folks learned that they would not be getting
packages from loved ones {YES! THOSE CALLS}. Because of you know, cross
contamination. But, you know, obviously, there are ways around that, and people
do have the right to receive mail. And luckily we were able to work with these
institutions. You know, also for instance nursing homes, many of them are
freezing their admissions right now, so things may not be available to them
when they get out of these institutions, but we still want to make sure that
people AREN’T CONFINED to as little a space as humanly possible for any length
of time, so-
[Pause]
[VIRGINIA]: For the most
part, you know, people who are looking to move into assisted living, into, you
know, small independent nursing homes, things like that, they’re not seeing the
same level of restrictions.
[REN]: Mhhhmm.
[VIRGINIA]: You know, so
that’s good! We are seeing, as for levels of treatment, for instance in a lot
of state hospitals, you know- treatment groups are being suspended!! And you
know, what if, for a lot of people, you know, the only treatment that they
receive is their medication! You know, and now, with that being suspended,
that’s affecting them.
[REN]: Hmmm.
[ERIN]: Right.
[VIRGINIA]: So, you know, we
really want to encourage anyone who that might be happening to please give us a
call--
[REN]: Right.
[VIRGINIA]: Because we are trying to monitor
that. As of the time of this recording, and, of course, this could even change
in the time before/after this podcast’s release, but there have been at least 4
staff members at different state hospitals that have tested positive for COVID
19. Luckily, this appears to only be at one institution, but we’re still
monitoring it VERY CLOSELY.
[REN]: So yeah, it
does sound like there are quite a few things that are particularly impacted
because of COVID 19, like you said. I think one of the things we really need to
highlight, in conclusion, is that, in communities and institutions, these are
peoples HOMES, and that even with the need to put protective measures in place
and make sure people are safe, people have certain rights **in their home** and
it doesn’t matter if that home is an institution or a nursing home, people have
those rights, and they SHOULD NOT be impacted. So that’s really what we’re
doing to make sure that yes, PEOPLE ARE PROTECTED, but also that people’s
rights are not being infringed during this time.
[ERIN]: Yes,
please get in touch with us! And I just wanted everybody listening to know that
there’s a couple of ways that you can do that. But we’re still actively manning
our phones and our intake system. So those are still good & folks can call
us at 1800….on a MWF. Also, if you have access to the internet, people can go
to dLCV.org/get-help, and there’s a
little form that you can fill out to get assistance from our office.
[Pause.]
And that’s not
to say that we’re still not looking at everything else going on. So, please
don’t hesitate to call us about something NOT RELATED to COVID 19, because
we’re still looking at that too! We are doing a lot of work there on COVID 19.
[REN]: Well.
Erin, and Virginia, thank you so much for being here and chatting with me.
Everything will change next week so we’ll have you on again next week- No, I’m
kidding! But anyways, thanks for being with me.
[VIRGINIA]: And now, **for a
DLCV highlight.**
Beth is a high
school sophomore who has a hearing impairment and some intellectual
disabilities. Beth’s father contacted
dLCV because they had met with DARS about pre-Employment Transition Services,
but they had never gotten any follow-up from DARS. dLCV participated in two
meetings for Beth. In the first meeting, we advocated for her to do a career
interest inventory using pictures instead of words. DARS provided this resource
for Beth. In the second meeting, Beth picked careers that fit her interests
(based on pictures). Because of our advocacy, Beth was able to receive the
services that she needed. She now has been able to pick careers based on her
interests, and she is moving in the right direction vocationally. Beth’s dad is
grateful there are new ways to communicate with his daughter and her new
ability to have options.
[REN]: So once again,
Erin, thank you so much for taking the time to chat with us. She is a font of
knowledge, and we are so blessed to have her. And Virginia I love having you
once again as my host and my interviewee//GUEST.
[VIRGINIA]: This is a weird time Ren, I
don’t know if you’ve noticed but this is a weird and scary time. We’re all just
doing our best and trying to be good and kind to one another. So…
[REN]: I think that is
the best we can strive for and DLCV is continuing it’s work in this very
strange time we’re living in. So, thank you all for listening to this episode
of Rights Here, Rights Now! - brought to you by the Disability Law Center of
Virginia. We’re available on Apple Podcasts, Spotify, where ever you get your
podcasts!
[VIRGINIA]: Don’t forget to subscribe and leave
us a review. If you need assistance or want more information about DLCV, and
what we do, visit us online at www.dlcv.org.
[REN]: You can also
follow us on twitter at @disabilitylawva
and you can always share us with your friends.
[VIRGINIA]: Until next time, I’m Virginia Pharis.
[REN]: And I’m Ren Faszewski. And this
has been…--
[VIRGINIA AND REN]: “Rights Here, Rights Now!” End of
transcript.