July 15, 2021 • 25 mins
There is a lot happening in Washington these days for people with disabilities. And as the old saying goes – if you’re not in the kitchen, you are on the menu! Today’s guest is not only in the kitchen in Congress, but she is often busy mixing up the ingredients to make the lives of people with disabilities and their families better. In this episode, Nicole Jorwic, The Arc’s Senior Director of Public Policy tells us what happens during August recess, what’s at stake in Washington for people with disabilities and why it is a critical time to build a relationship with your Member of Congress.
August Congressional Recess Resources:
The Arc US Action Center: https://p2a.co/lRPDZ5C
Find your federal legislators: https://www.govtrack.us/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Welcome to the arc experience, featuring the
stories of self advocates withdisabilities and their families
from around Wisconsin.
Be inspired.
Take action.
And now for today's episode,
Speaker 2 (00:23):
Hello and welcome to the arc experience podcast.
I am your host, Lisa pew of thearc Wisconsin.
And today we're talking a littlebit about recess.
We'll get into that in a second.
There has to do with Washingtonand federal policy.
There's a lot happening inWashington, these days for
people with disabilities.
And as that old saying goes, ifyou're not in the kitchen,
(00:46):
you're on the menu.
So today's guest is not only inthe kitchen in Congress.
She has often mixing up therecipe to make the lives of
people with disabilities intheir families better and
convince our elected officialson both sides of the aisle to
just do the right thing.
Um, Nicole, Rick is seniordirector of public policy at the
arc of the United States.
(01:07):
She has more than a decade ofexperience working at the state
and national level, developingpublic policy best practices in
serving individuals withdisabilities.
Nicole, thanks for joining.
Speaker 3 (01:20):
Thank you so much, Lisa.
And thanks for that kindintroduction.
That'd be here.
Speaker 2 (01:24):
No, Nicole, before we kind of get into the meat of
this podcast, I know that you'redriven to this work for a very
personal reason.
I'm wondering if you could sharea little bit about that?
Speaker 3 (01:36):
Sure.
Yeah.
Um, I mean, definitely whatdrives my work, uh, is my
brother, Chris, my brother,Chris is 31 and has autism.
Um, so, um, disability has beenpart of my life for almost my
entire life, although he's quitea bit younger.
Um, and so the needs that hehas, the fact that he receives,
(01:56):
um, some of the services that,that I along with the rest of
the arc network is fighting sohard for is something that keeps
me going.
It's also something that makesit a little heavier sometimes,
but it's definitely the thingthat, uh, drives the work that I
do.
And I think everyone on the hillcertainly knows my personal
connection to, um, and thatalways helps in addition to all
the numbers and wonkiness thepersonal touch always helps.
Speaker 2 (02:20):
Right?
I know I've heard you talk topeople about sharing their
stories.
And can you talk a little bitabout, uh, in public policy, how
important that personal storyis?
Speaker 3 (02:31):
Yeah.
I mean, frankly, personalstories are the most important
things when it comes toimpacting change in public
policy, whether it's at thestate level or at the national
level, you know, we can be beingthe kind of professional
lobbyists can always followbehind with, with, um, numbers
and data.
But what a legislator is goingto remember is the person that
they heard, um, with a familymember of a person with a
(02:53):
disability that the person witha disability themselves talking
about how something matters tothem and how it impacts their
lives.
Those faces remain in the mindsof those folks when they're
voting more than a number orstatistic.
And so stories are the mostimportant thing.
And so it can be difficult.
I know it's not always easy,especially when things aren't
going well.
That's certainly true in my S mysituation.
(03:16):
Sometimes my brother's havingharder moments and then it's
harder to talk about, but, uh,it's why I really value
everybody who does make thatstep and share that story
because I know the impact thatit has when push comes to shove
Speaker 2 (03:29):
Well, and speaking of sharing personal stories, I know
that we have some opportunitiescoming up to really have an
impact on our elected officials.
Not that we can't all the time,but August I know is
traditionally the time.
Um, they call it August recess.
And I know when I first heardthe term or congressional
members go on recess, I waslike, well, they just get some
(03:53):
recreation, you know, what doesthat mean?
So can you describe for ourlisteners kind of what is August
recess and what happens duringthat time?
Sure.
Speaker 3 (04:03):
So you can think about recess when you hear
recess, is that, that means thatlegislators are going to be
home.
They're going to be home intheir states.
They're going to be home intheir districts.
So it's not for recreation orrecess in the way that we might
think about it in thetraditional context, but it's
for recess from traditionalworking period.
So Congress, when they are insession, we call it that's when
(04:23):
they're doing work, passingvotes, doing work in the
committees that they might besitting on.
And then recess is time whenthey're back in their states, in
their districts, hearing fromconstituents.
So recess is really, reallyimportant when it comes to
engaging with your legislators,because it does mean that
they're around the, obviously inthe pandemic, that means
something a little bit differentthan it might have at other
(04:45):
times in the past.
That's when you would see thingslike big town halls, where
legislators were meeting with,with their constituents, some of
them are still doing somesmaller in-person things.
And I think we'll see more ofthat pick back up.
Um, but maybe not fully byAugust.
There's a lot of actuallyopportunities for w to
participate.
If folks couldn't have beforemade it to an in person event,
(05:06):
there's a lot of virtualbriefings, virtual events.
And so that's actually a reallyexciting opportunity to engage
more.
And, um, August is a reallyimportant one because it's one
of the longest ones.
Um, they're typically out thewhole month of August.
Um, that's true.
And it's actually a little bitlonger this year because there's
some additional, um, committeeweeks at the end.
(05:28):
So there, if you really thinkabout it, they're going to be
home for the beginning of Augustuntil around September 20th.
So it's a really good time to behaving your message known.
And the arc of the United Stateswill be putting out plenty of
information and ways thatdifferent ways that you can
engage with your legislators.
So that's what a recess is.
And that's why it's really,really important, especially
(05:50):
this year, too, given the timingof everything we, um, I'm happy
to talk more kind of about whatwe're pushing for and I'll do
that later.
But, um, the timing of when it'sall expected to come together
for when they're going to bevoting is, um, the end of
September.
So it's even more important toreally get in, um, during that
time
Speaker 2 (06:11):
While you're and the pressure on us.
Well, I'm just glad to know ourelected officials.
Aren't just getting somerecreation.
They're still working on theirrecess.
So, so it sounds like you have ajob for us.
Uh, during this Augusttimeframe, our elected officials
would come back to Wisconsin.
So when we say electedofficials, and when we're
talking to Nicole, we're talkingabout our congressional members,
(06:31):
our senators members of the ushouse of representatives,
Nicole, what are the issues thatwe really want to help those
individuals understand thisAugust?
Because, I mean, I know we couldtalk about anything that's
important to us.
And I know a lot of people thatlisten to this are, you know,
it's special education, or itmight be homemade human based
(06:52):
waivers, uh, general Medicaid,um, transportation.
So, and, and those are allobviously important, but what
are some of the key decisionsthat our elected officials will
be making?
Like you say, when they comeback to Washington, that we want
to kind of leave them with animpression of what's needed.
Yeah.
Speaker 3 (07:10):
And Lisa, you raise a really important point because,
um, there are a lot more thanjust the issues I'm going to be
highlighting on that.
Her focusing on that we will beworking on behind the scenes,
but what the arc tries to do inorder to make it really clear
for our advocates, but alsoclear for legislators is we kind
of prioritize.
And so we have our top threeissues that we're really
(07:32):
focusing on to keep it simpleand to keep the message simple.
And then also too, so that it'seasier to tie personal stories
to these issues.
And so our top priority, andit's not just because it's the
one that I cover, um, is, um, a$400 billion investment for
Medicaid home andcommunity-based services or
HCBS, this is something that hasalready been proposed by
(07:54):
president Biden in what, what hecalls the infrastructure package
or the American jobs plan.
And the$400 million is meant toexpand access to those Medicaid
home and community basedservices.
Those services can includethings like job coaching,
supporting somebody to liveindependently, supporting, um,
uh, community integration,personal hygiene, et cetera.
(08:17):
There's a wide variety of thoseservices.
And so it's about creating moreaccess.
So meaning for people who mightbe waiting for those services,
giving them that access alsorelieving the pressure on unpaid
family caregivers who arefilling in the gaps in those
services while we wait.
And the$400 million is also foraddressing the workforce issues
when it comes to providing thoseMedicaid home and
(08:40):
community-based services, wedon't have enough workers, and
that's why it is infrastructure,right?
Care is infrastructure.
But anyway, so number one, toppriority, the$400 billion
investment in Medicaid andcommunity-based services for a
hundred dollars Medicaid each toBS.
That's all you need to know andthen talk about why they matter.
Speaker 2 (08:59):
And for our listeners and Wisconsin, when Nicole says
HCBS, that might have adifferent name depending on what
state you're in.
So in Wisconsin, an HCBS arehome and community based
services, waiver program wouldbe think about family care, Iris
family care partnership, and thechildren's longterm support
program.
(09:19):
Those are HCBS.
Speaker 3 (09:22):
Thank you, Lisa.
And yes.
And so those would be the onesthat would be bolstered and
expanded underneath with thisadditional funding.
Um, and it is important to notewhat, uh, the differences
between the states.
Um, and so that's our toppriority.
Our number, our second priority,um, is around making sure that
there is a, um, paid leave pro anational paid leave program to
(09:45):
support family caregivers, tosupport people with
disabilities, to have access tothat paid leave is really
important.
And it's something that the archas been doing a lot that I
don't know, gets as muchattention, but we're, um, uh,
one of the disability groupsthat's really in that space,
making sure that any of thosepolicies are inclusive, um,
inclusive of all workers.
So including workers with peoplewith disabilities, but also
(10:07):
being inclusive of all familycaregivers and that cause that
family might be different,right?
It might be someone like me,who's a sibling, et cetera.
So that's our number twopriority.
Speaker 2 (10:16):
And Nicole, just a quick pause on that when you say
paid leave, that means that if Ineed to leave my job, because
either I have a chroniccondition and it's flaring up
and I need to take some time formedical care or just, uh, uh,
because of my condition or ifI'm a family caregiver, like you
(10:37):
said, a sibling, I need to goand take care of my brother or
sister with a disability becauseof their medical or disability
related needs.
That's where I could be entitledto some paid leave time from my
employer.
Speaker 3 (10:48):
Yes, definitely.
Those are two really goodexamples.
A lot of people, the contextthat they no pay leave, um, in
is with, is around, you know,um, taking leave after the
arrival of a new child.
But yes, it's much broader thanthat to your point, which is why
we're focusing on it.
It's, you know, paid leave for afamily member who has to attend
(11:09):
a two day IEP meeting, thosekinds of things.
We need to make sure that, thatthose are included.
And that's why the arc is theaccording and national paid
leave program.
Speaker 2 (11:16):
Yeah.
Very much needed.
Thank you, Nicole.
And your number three.
Speaker 3 (11:20):
Yes.
And, um, and number three, and Ishould note that both number two
and number three are covered bymy wonderful colleague, Bethany,
Lily, um, and our number threeis around addressing the income
and asset limits in supplementalsecurity income or SSI.
Um, folks might not realize, butthere are, um, really strict
income and asset limits thatreally prohibit people with
(11:44):
disabilities from takingadditional hours at a job or
moving onto a different, higher,um, higher level job.
Um, and so this, something thathas been on the arcs priority,
all of these things have been onthe arts priority list for a
really long time.
But if we're talking abouteconomic recovery, we have to
make sure that we're also beinginclusive of the needs of people
(12:04):
with disabilities.
And one way to make sure that wecan have more economic
independence is by addressingthese issues.
And these are decades oldproblems.
These have not been adjusted fordecades.
And so that's our number threepriority to try to get into that
recovery package.
So again, all three of thosepriorities date, the medicated
CBS, the paid leave as well asadjusting, um, income and asset
(12:27):
limits for SSI are things thatwe're trying to get into the
package that we expect to comein together in September
Speaker 2 (12:33):
To come in September.
Okay.
So when we meet with ourcongressional members in August,
because I'm sure everyonelistening is now going to do
that, um, will we be, um, willthey know when we reference this
recovery package?
Like this is going to besomething that they've been
thinking about or heard about
Speaker 3 (12:55):
They should.
Um, but it's not luckily or not.
I don't know if it's luckily ornot, but there isn't, there
hasn't been like a legislativevehicle or a bill name, right?
Like, so with the Americans withdisabilities act, that was the
bill name.
So we can't call and say supportXXX act.
Um, we have to talk about theissues, but the baseline is, um,
(13:21):
in, in recovery legislation, youplease include HTVs, um, paid
leave and, um, SSI income andasset limits so that the ask is
around being included inrecovery.
Speaker 2 (13:35):
Got it, got it.
Okay.
That sounds easy enough.
So, uh, I'm getting ready to setup a meeting and August.
I know what my talking pointsare.
What's your advice for how tohave a really good meeting
during August recess?
Are there any kind of tips?
Speaker 3 (13:55):
Sure.
I mean, so anything that you canfind out about the legislator or
the, or if you're meeting with astaff member, for example,
sometimes those staff membershave personal connections to the
issue.
They might have most sibling ofa disability, a cousin with a
disability, if there's any wayto get that until ahead of time,
that's always helpful or ask thequestion, um, because they might
not, um, they might not be out,uh, forthright with it, but when
(14:20):
asked the question, theyprobably would engage.
Um, and so it's always, it justalways helps to kind of make
those personal connections asyou're building relationships.
Um, but, but when it comes tojust having a successful
meeting, it really just comesdown to you don't need to be an
expert on Medicaid or waivers or, um, anything, all you need to
(14:40):
be an expert on is your ownstory and how it impacts your
life.
So if you're talking how to havea meaningful meeting is to talk
about it.
So if I was going to meet, um,not as Nicole from the arc of
the United States, but as NicoleJurich sister of Chris with one
of our senators in Illinois,where I'm from, um, just over
the border, um, is I would sitdown and I would talk about how
(15:03):
without the support of thedirect support professional and
the funding that our family,that Chris receives and assist
our family in Medicaid, home andcommunity based services, Chris
would not be able to get outinto the community.
Um, my parents w one of myparents would have had to give
up their job.
Um, and that's why it's reallyimportant that you make this big
(15:24):
investment because of the hugeamount of need for these
services for people outside ofjust my family, that's it, it
doesn't have to be complicatedand that, and I'm not just
saying it, but it is the mosteffective thing.
Um, and so how to have aneffective meeting is to just not
worry too much about yourtalking points and just worry
(15:44):
about that connection.
Speaker 2 (15:47):
So you mentioned meeting with staff, um, is that
good enough?
I mean, should it be pushing fora meeting with the member or
what are your, what's yourperspective on me misstep?
Speaker 3 (15:56):
Sure.
I mean, I think it's, it's goodto, to get whatever you can get.
So it's not, if you get aresponse back that says
so-and-so staffer can meet withyou, um, I wouldn't push an and
say, oh, no, but I wanted tomeet with Senator Baldwin or, or
what have you.
Um, I would take that meetingbecause frankly having the
relationship with the staffers,um, especially at the district
(16:18):
level, then if something iscoming up and you get an action
alert from the arc aboutsomething else that's popping
up, it's much easier to getahold of that individual staffer
than it is to get a hold of them, the member.
And you can also then make theask at the end of that meeting
with a staffer.
You know, it was really great tomeet with you, hopefully the
next time that the Senator orrepresentative is in town, you
(16:39):
know, we can invite them to aprogram or something, um, or, or
have that one-on-one meeting,um, with the legislator.
So don't be discouraged if youmeet with a staffer.
Um, the majority of the workthat I do is, is with staffers
and, and we've been prettyeffective.
So don't, don't be discouragedby that at all.
Speaker 2 (16:58):
You know, you've mentioned the word relationship
a number of times, and I thinkthat's such an important thing
to remember that it's not justlike a, I had my meeting and
we're done, like you want to bebuilding that, um, relationship
with that elected official overtime, right?
Speaker 3 (17:16):
Yeah, definitely.
You want to have that foundationbecause that is when it's easier
to get a call answered or to geta meeting down the line.
And, but it's more than justbeing transactional.
Right.
I don't want to make it seem so.
Um, it really, it really is thething that makes them remember
you too.
Um, and then if an issue comesup that they have on their
radar, they think of you to call.
(17:38):
Um, and I mean, I know I canspeak for myself personally,
being in DC for the past sixyears.
Um, the success that that we'vehad is because of the
relationships, the personalrelationships, I've been able to
build myself and others at thearc, I've been able to build
with staffers, um, because thatthen you're on their radar.
Um, and to the point that youmade early in the podcast being
(18:00):
on the radar is the same thingas not being on the table.
Right.
If you're on the radar to askthe questions, then probably
you're not going to besurprised.
And the best thing that you canhope for in, in legislation is
to not be surprised.
And so, um, you know, I think ofa lot of this as sales and
relationships.
Um, and so it's, it's justimportant to do that.
(18:21):
It's important to be consistentto your point, to not only go in
also to not only go when you'reasking for something, if your
legislators having an event for,you know, a parade or something,
and you see, you can be thereand just say, Hey, and say,
thank you for something thatthey did.
It has to be all of that inorder to build that foundational
relationship.
Speaker 2 (18:42):
So, Nicole, I just want to thank you on behalf of a
lot of individuals withdisabilities and family members,
about how hard you work inWashington and the success that
you've had an increasingattention and awareness to, um,
the needs of people withdisabilities, specifically with
home and community-based waiversand the need for investment.
(19:03):
And you mentioned the directcare workforce crisis, which is
huge.
I know nationally, but veryacute in Wisconsin.
And I guess, um, I'm wonderinghow you're feeling, uh, in terms
of the future.
I mean, are you optimistic thatCongress will be making
investments that make people'slives better?
(19:24):
Do you feel as if the next sayfour years are going to make
some significant changes?
Speaker 3 (19:33):
Yeah.
So first of all, thank you.
Um, I think that, um, I amoptimistic and I'm, uh, I think
that, um, because of the workthat so many people did, when so
many things were under threatfor the past four or five years
when Medicaid, the programitself was under such a risk for
taking huge cuts and, and usknowing how that would impact
(19:54):
the service system for peoplewith disabilities and their
families.
I think that's why we have thatfoundation of support.
Um, it wasn't, you know, four orfive years ago, there were a lot
of legislators that didn't evenknow the difference between
Medicare and Medicaid, and thatdoesn't exist.
A lot of this has happened evenin my short tenure six years.
Um, and I'm not saying thatthat's because of me, it's
because of the work thateverybody has done, that every
(20:16):
member, every person that's,that's part of the disability
community, and also the I'moptimistic because of the fact
that we grew up, we're growingour influence outside of just
the disability community, thedisability community is
extremely powerful.
It's one of the, the, the groupsthat consistently gets called
out for the reason that we stillhave an affordable care act and
(20:36):
that those big Medicaid cutsdidn't happen, but we also have
to get out of our silos.
So we're working more withgroups that we might not have in
the past group that are women'sgroups, labor that are now
talking about community-basedservices that never happened
before.
All of that leads to greateraccess.
All of that leads to these hugeinvestments.
(20:57):
We've never seen a proposal thatincludes we were, we were
thrilled to get$12.7 billion forone year of funding in March.
And then two weeks later got anannouncement about$400 billion.
That's a concrete example of thesuccess.
And the, of the hugeunderstanding that there finally
is, I'm optimistic, but it'sstill going to take a lot of
(21:20):
work.
It's still going to take a lotof people, a lot of public
education, a lot of people whomight not have a personal
connection to someone with adisability or an aging adult,
caring about this issue to give,get us to where we ultimately
need to go, but I am extremelyoptimistic.
And I think that's why it's soimportant for folks to use times
(21:40):
like August recess and otherthings, because we have to keep
the pressure on, um, we can'tjust assume that this is
something that's done.
We have to remain vigilant.
Um, but I am optimistic that ifwe do, we can, we can get to a
place where every person with adisability has the services that
they need, um, in their homesand communities.
Speaker 2 (21:57):
Sure.
So, uh, any, any place to turnus toward more recesses help us
or more resources, resourcerecess, I'm getting it mixed up.
Where, where do I find moreresources about August recess?
Speaker 3 (22:11):
Yeah.
So we're putting together as wespeak, um, a toolkit that will
be available next week.
Actually anyone who's on thearts, um, lift.
Um, so if you're not thearc.org/action is a good place
to go.
You can sign up for a list, buteven if you don't, there's a
place where you can share yourstory.
There's a place where you canfind our action alerts that have
blurbs from, for the threepriorities that I talked about.
(22:33):
So I would definitely point youthere.
Um, and always check that ourblog that's where we post, um,
new information, uh, and that'swhere, we'll where we will be
posting next week, a blog thatBethany and I wrote under the
umbrella of care, can't wait,which is what, what theme kind
of, of our recess activities andtoolkits is going to be around.
(22:54):
Um, and, um, tying the issues ofHCBS and paid leave and social
security together about how theyall impact.
So, um, those are, those aresome, uh, quick places to go,
but definitely thearc.org/action, um, and, uh, is
always a good place to start.
Speaker 2 (23:10):
Okay.
I'll put that in the show notes.
So as we wrap up our timetogether, I just wanted to thank
you again for joining us.
I think our takeaways are, um,make sure you participate in
August recess, get yourmeetings.
Your top three priorities arethe 400 billion for HCBS paid
leave and the in income assetlimits for SSI.
(23:32):
Any other things you want tomake sure we remember before you
say goodbye, Nicole.
Speaker 3 (23:37):
Um, I just, I just want to want to remind folks
that I know it can beexhausting.
I know it can be tiring.
I know it can seem like we'refor, um, tweaks to the same
sentence over and over, but itreally is important.
We had over 200,000 actions toCongress that led us to that
12.7 billion and we're going toneed even more so don't, don't,
(23:59):
uh, get tired and don't getdiscouraged because we really
are on the precipice of thingsthat have been on the art's
priority list for decades.
And it's because of everybody.
And so we're, we're strongertogether and we'll keep moving
forward and I really appreciatethe timeliness.
Speaker 2 (24:17):
All right, everybody listening, make that call and
get that meeting participate inAugust recess.
Thank you so much, Nicole.
And thank you to our listenersof the art experience podcast on
your mostly some pew, please besure to like share and
subscribe.
And we'll talk to you next time.
Speaker 1 (24:35):
Today's episode of the Ark experience was brought
to you by the arc Wisconsin, thestate's oldest advocacy
organization for people withintellectual developmental
disabilities and their familiesit's funded in part by the
Wisconsin board for people withdevelopmental disabilities.
Our theme music called speciesis the property of[inaudible]
(24:57):
and cannot be copied ordistributed without permission.
It was produced by EleanorCheetham, a composer and artist
with autism.
Welcome to the arc experience, featuring the
stories of self advocates withdisabilities and their families
from around Wisconsin.
Be inspired.
Take action.
And now for today's episode,
Speaker 2 (00:23):
Hello and welcome to the arc experience podcast.
I am your host, Lisa pew of thearc Wisconsin.
And today we're talking a littlebit about recess.
We'll get into that in a second.
There has to do with Washingtonand federal policy.
There's a lot happening inWashington, these days for
people with disabilities.
And as that old saying goes, ifyou're not in the kitchen,
(00:46):
you're on the menu.
So today's guest is not only inthe kitchen in Congress.
She has often mixing up therecipe to make the lives of
people with disabilities intheir families better and
convince our elected officialson both sides of the aisle to
just do the right thing.
Um, Nicole, Rick is seniordirector of public policy at the
arc of the United States.
(01:07):
She has more than a decade ofexperience working at the state
and national level, developingpublic policy best practices in
serving individuals withdisabilities.
Nicole, thanks for joining.
Speaker 3 (01:20):
Thank you so much, Lisa.
And thanks for that kindintroduction.
That'd be here.
Speaker 2 (01:24):
No, Nicole, before we kind of get into the meat of
this podcast, I know that you'redriven to this work for a very
personal reason.
I'm wondering if you could sharea little bit about that?
Speaker 3 (01:36):
Sure.
Yeah.
Um, I mean, definitely whatdrives my work, uh, is my
brother, Chris, my brother,Chris is 31 and has autism.
Um, so, um, disability has beenpart of my life for almost my
entire life, although he's quitea bit younger.
Um, and so the needs that hehas, the fact that he receives,
(01:56):
um, some of the services that,that I along with the rest of
the arc network is fighting sohard for is something that keeps
me going.
It's also something that makesit a little heavier sometimes,
but it's definitely the thingthat, uh, drives the work that I
do.
And I think everyone on the hillcertainly knows my personal
connection to, um, and thatalways helps in addition to all
the numbers and wonkiness thepersonal touch always helps.
Speaker 2 (02:20):
Right?
I know I've heard you talk topeople about sharing their
stories.
And can you talk a little bitabout, uh, in public policy, how
important that personal storyis?
Speaker 3 (02:31):
Yeah.
I mean, frankly, personalstories are the most important
things when it comes toimpacting change in public
policy, whether it's at thestate level or at the national
level, you know, we can be beingthe kind of professional
lobbyists can always followbehind with, with, um, numbers
and data.
But what a legislator is goingto remember is the person that
they heard, um, with a familymember of a person with a
(02:53):
disability that the person witha disability themselves talking
about how something matters tothem and how it impacts their
lives.
Those faces remain in the mindsof those folks when they're
voting more than a number orstatistic.
And so stories are the mostimportant thing.
And so it can be difficult.
I know it's not always easy,especially when things aren't
going well.
That's certainly true in my S mysituation.
(03:16):
Sometimes my brother's havingharder moments and then it's
harder to talk about, but, uh,it's why I really value
everybody who does make thatstep and share that story
because I know the impact thatit has when push comes to shove
Speaker 2 (03:29):
Well, and speaking of sharing personal stories, I know
that we have some opportunitiescoming up to really have an
impact on our elected officials.
Not that we can't all the time,but August I know is
traditionally the time.
Um, they call it August recess.
And I know when I first heardthe term or congressional
members go on recess, I waslike, well, they just get some
(03:53):
recreation, you know, what doesthat mean?
So can you describe for ourlisteners kind of what is August
recess and what happens duringthat time?
Sure.
Speaker 3 (04:03):
So you can think about recess when you hear
recess, is that, that means thatlegislators are going to be
home.
They're going to be home intheir states.
They're going to be home intheir districts.
So it's not for recreation orrecess in the way that we might
think about it in thetraditional context, but it's
for recess from traditionalworking period.
So Congress, when they are insession, we call it that's when
(04:23):
they're doing work, passingvotes, doing work in the
committees that they might besitting on.
And then recess is time whenthey're back in their states, in
their districts, hearing fromconstituents.
So recess is really, reallyimportant when it comes to
engaging with your legislators,because it does mean that
they're around the, obviously inthe pandemic, that means
something a little bit differentthan it might have at other
(04:45):
times in the past.
That's when you would see thingslike big town halls, where
legislators were meeting with,with their constituents, some of
them are still doing somesmaller in-person things.
And I think we'll see more ofthat pick back up.
Um, but maybe not fully byAugust.
There's a lot of actuallyopportunities for w to
participate.
If folks couldn't have beforemade it to an in person event,
(05:06):
there's a lot of virtualbriefings, virtual events.
And so that's actually a reallyexciting opportunity to engage
more.
And, um, August is a reallyimportant one because it's one
of the longest ones.
Um, they're typically out thewhole month of August.
Um, that's true.
And it's actually a little bitlonger this year because there's
some additional, um, committeeweeks at the end.
(05:28):
So there, if you really thinkabout it, they're going to be
home for the beginning of Augustuntil around September 20th.
So it's a really good time to behaving your message known.
And the arc of the United Stateswill be putting out plenty of
information and ways thatdifferent ways that you can
engage with your legislators.
So that's what a recess is.
And that's why it's really,really important, especially
(05:50):
this year, too, given the timingof everything we, um, I'm happy
to talk more kind of about whatwe're pushing for and I'll do
that later.
But, um, the timing of when it'sall expected to come together
for when they're going to bevoting is, um, the end of
September.
So it's even more important toreally get in, um, during that
time
Speaker 2 (06:11):
While you're and the pressure on us.
Well, I'm just glad to know ourelected officials.
Aren't just getting somerecreation.
They're still working on theirrecess.
So, so it sounds like you have ajob for us.
Uh, during this Augusttimeframe, our elected officials
would come back to Wisconsin.
So when we say electedofficials, and when we're
talking to Nicole, we're talkingabout our congressional members,
(06:31):
our senators members of the ushouse of representatives,
Nicole, what are the issues thatwe really want to help those
individuals understand thisAugust?
Because, I mean, I know we couldtalk about anything that's
important to us.
And I know a lot of people thatlisten to this are, you know,
it's special education, or itmight be homemade human based
(06:52):
waivers, uh, general Medicaid,um, transportation.
So, and, and those are allobviously important, but what
are some of the key decisionsthat our elected officials will
be making?
Like you say, when they comeback to Washington, that we want
to kind of leave them with animpression of what's needed.
Yeah.
Speaker 3 (07:10):
And Lisa, you raise a really important point because,
um, there are a lot more thanjust the issues I'm going to be
highlighting on that.
Her focusing on that we will beworking on behind the scenes,
but what the arc tries to do inorder to make it really clear
for our advocates, but alsoclear for legislators is we kind
of prioritize.
And so we have our top threeissues that we're really
(07:32):
focusing on to keep it simpleand to keep the message simple.
And then also too, so that it'seasier to tie personal stories
to these issues.
And so our top priority, andit's not just because it's the
one that I cover, um, is, um, a$400 billion investment for
Medicaid home andcommunity-based services or
HCBS, this is something that hasalready been proposed by
(07:54):
president Biden in what, what hecalls the infrastructure package
or the American jobs plan.
And the$400 million is meant toexpand access to those Medicaid
home and community basedservices.
Those services can includethings like job coaching,
supporting somebody to liveindependently, supporting, um,
uh, community integration,personal hygiene, et cetera.
(08:17):
There's a wide variety of thoseservices.
And so it's about creating moreaccess.
So meaning for people who mightbe waiting for those services,
giving them that access alsorelieving the pressure on unpaid
family caregivers who arefilling in the gaps in those
services while we wait.
And the$400 million is also foraddressing the workforce issues
when it comes to providing thoseMedicaid home and
(08:40):
community-based services, wedon't have enough workers, and
that's why it is infrastructure,right?
Care is infrastructure.
But anyway, so number one, toppriority, the$400 billion
investment in Medicaid andcommunity-based services for a
hundred dollars Medicaid each toBS.
That's all you need to know andthen talk about why they matter.
Speaker 2 (08:59):
And for our listeners and Wisconsin, when Nicole says
HCBS, that might have adifferent name depending on what
state you're in.
So in Wisconsin, an HCBS arehome and community based
services, waiver program wouldbe think about family care, Iris
family care partnership, and thechildren's longterm support
program.
(09:19):
Those are HCBS.
Speaker 3 (09:22):
Thank you, Lisa.
And yes.
And so those would be the onesthat would be bolstered and
expanded underneath with thisadditional funding.
Um, and it is important to notewhat, uh, the differences
between the states.
Um, and so that's our toppriority.
Our number, our second priority,um, is around making sure that
there is a, um, paid leave pro anational paid leave program to
(09:45):
support family caregivers, tosupport people with
disabilities, to have access tothat paid leave is really
important.
And it's something that the archas been doing a lot that I
don't know, gets as muchattention, but we're, um, uh,
one of the disability groupsthat's really in that space,
making sure that any of thosepolicies are inclusive, um,
inclusive of all workers.
So including workers with peoplewith disabilities, but also
(10:07):
being inclusive of all familycaregivers and that cause that
family might be different,right?
It might be someone like me,who's a sibling, et cetera.
So that's our number twopriority.
Speaker 2 (10:16):
And Nicole, just a quick pause on that when you say
paid leave, that means that if Ineed to leave my job, because
either I have a chroniccondition and it's flaring up
and I need to take some time formedical care or just, uh, uh,
because of my condition or ifI'm a family caregiver, like you
(10:37):
said, a sibling, I need to goand take care of my brother or
sister with a disability becauseof their medical or disability
related needs.
That's where I could be entitledto some paid leave time from my
employer.
Speaker 3 (10:48):
Yes, definitely.
Those are two really goodexamples.
A lot of people, the contextthat they no pay leave, um, in
is with, is around, you know,um, taking leave after the
arrival of a new child.
But yes, it's much broader thanthat to your point, which is why
we're focusing on it.
It's, you know, paid leave for afamily member who has to attend
(11:09):
a two day IEP meeting, thosekinds of things.
We need to make sure that, thatthose are included.
And that's why the arc is theaccording and national paid
leave program.
Speaker 2 (11:16):
Yeah.
Very much needed.
Thank you, Nicole.
And your number three.
Speaker 3 (11:20):
Yes.
And, um, and number three, and Ishould note that both number two
and number three are covered bymy wonderful colleague, Bethany,
Lily, um, and our number threeis around addressing the income
and asset limits in supplementalsecurity income or SSI.
Um, folks might not realize, butthere are, um, really strict
income and asset limits thatreally prohibit people with
(11:44):
disabilities from takingadditional hours at a job or
moving onto a different, higher,um, higher level job.
Um, and so this, something thathas been on the arcs priority,
all of these things have been onthe arts priority list for a
really long time.
But if we're talking abouteconomic recovery, we have to
make sure that we're also beinginclusive of the needs of people
(12:04):
with disabilities.
And one way to make sure that wecan have more economic
independence is by addressingthese issues.
And these are decades oldproblems.
These have not been adjusted fordecades.
And so that's our number threepriority to try to get into that
recovery package.
So again, all three of thosepriorities date, the medicated
CBS, the paid leave as well asadjusting, um, income and asset
(12:27):
limits for SSI are things thatwe're trying to get into the
package that we expect to comein together in September
Speaker 2 (12:33):
To come in September.
Okay.
So when we meet with ourcongressional members in August,
because I'm sure everyonelistening is now going to do
that, um, will we be, um, willthey know when we reference this
recovery package?
Like this is going to besomething that they've been
thinking about or heard about
Speaker 3 (12:55):
They should.
Um, but it's not luckily or not.
I don't know if it's luckily ornot, but there isn't, there
hasn't been like a legislativevehicle or a bill name, right?
Like, so with the Americans withdisabilities act, that was the
bill name.
So we can't call and say supportXXX act.
Um, we have to talk about theissues, but the baseline is, um,
(13:21):
in, in recovery legislation, youplease include HTVs, um, paid
leave and, um, SSI income andasset limits so that the ask is
around being included inrecovery.
Speaker 2 (13:35):
Got it, got it.
Okay.
That sounds easy enough.
So, uh, I'm getting ready to setup a meeting and August.
I know what my talking pointsare.
What's your advice for how tohave a really good meeting
during August recess?
Are there any kind of tips?
Speaker 3 (13:55):
Sure.
I mean, so anything that you canfind out about the legislator or
the, or if you're meeting with astaff member, for example,
sometimes those staff membershave personal connections to the
issue.
They might have most sibling ofa disability, a cousin with a
disability, if there's any wayto get that until ahead of time,
that's always helpful or ask thequestion, um, because they might
not, um, they might not be out,uh, forthright with it, but when
(14:20):
asked the question, theyprobably would engage.
Um, and so it's always, it justalways helps to kind of make
those personal connections asyou're building relationships.
Um, but, but when it comes tojust having a successful
meeting, it really just comesdown to you don't need to be an
expert on Medicaid or waivers or, um, anything, all you need to
(14:40):
be an expert on is your ownstory and how it impacts your
life.
So if you're talking how to havea meaningful meeting is to talk
about it.
So if I was going to meet, um,not as Nicole from the arc of
the United States, but as NicoleJurich sister of Chris with one
of our senators in Illinois,where I'm from, um, just over
the border, um, is I would sitdown and I would talk about how
(15:03):
without the support of thedirect support professional and
the funding that our family,that Chris receives and assist
our family in Medicaid, home andcommunity based services, Chris
would not be able to get outinto the community.
Um, my parents w one of myparents would have had to give
up their job.
Um, and that's why it's reallyimportant that you make this big
(15:24):
investment because of the hugeamount of need for these
services for people outside ofjust my family, that's it, it
doesn't have to be complicatedand that, and I'm not just
saying it, but it is the mosteffective thing.
Um, and so how to have aneffective meeting is to just not
worry too much about yourtalking points and just worry
(15:44):
about that connection.
Speaker 2 (15:47):
So you mentioned meeting with staff, um, is that
good enough?
I mean, should it be pushing fora meeting with the member or
what are your, what's yourperspective on me misstep?
Speaker 3 (15:56):
Sure.
I mean, I think it's, it's goodto, to get whatever you can get.
So it's not, if you get aresponse back that says
so-and-so staffer can meet withyou, um, I wouldn't push an and
say, oh, no, but I wanted tomeet with Senator Baldwin or, or
what have you.
Um, I would take that meetingbecause frankly having the
relationship with the staffers,um, especially at the district
(16:18):
level, then if something iscoming up and you get an action
alert from the arc aboutsomething else that's popping
up, it's much easier to getahold of that individual staffer
than it is to get a hold of them, the member.
And you can also then make theask at the end of that meeting
with a staffer.
You know, it was really great tomeet with you, hopefully the
next time that the Senator orrepresentative is in town, you
(16:39):
know, we can invite them to aprogram or something, um, or, or
have that one-on-one meeting,um, with the legislator.
So don't be discouraged if youmeet with a staffer.
Um, the majority of the workthat I do is, is with staffers
and, and we've been prettyeffective.
So don't, don't be discouragedby that at all.
Speaker 2 (16:58):
You know, you've mentioned the word relationship
a number of times, and I thinkthat's such an important thing
to remember that it's not justlike a, I had my meeting and
we're done, like you want to bebuilding that, um, relationship
with that elected official overtime, right?
Speaker 3 (17:16):
Yeah, definitely.
You want to have that foundationbecause that is when it's easier
to get a call answered or to geta meeting down the line.
And, but it's more than justbeing transactional.
Right.
I don't want to make it seem so.
Um, it really, it really is thething that makes them remember
you too.
Um, and then if an issue comesup that they have on their
radar, they think of you to call.
(17:38):
Um, and I mean, I know I canspeak for myself personally,
being in DC for the past sixyears.
Um, the success that that we'vehad is because of the
relationships, the personalrelationships, I've been able to
build myself and others at thearc, I've been able to build
with staffers, um, because thatthen you're on their radar.
Um, and to the point that youmade early in the podcast being
(18:00):
on the radar is the same thingas not being on the table.
Right.
If you're on the radar to askthe questions, then probably
you're not going to besurprised.
And the best thing that you canhope for in, in legislation is
to not be surprised.
And so, um, you know, I think ofa lot of this as sales and
relationships.
Um, and so it's, it's justimportant to do that.
(18:21):
It's important to be consistentto your point, to not only go in
also to not only go when you'reasking for something, if your
legislators having an event for,you know, a parade or something,
and you see, you can be thereand just say, Hey, and say,
thank you for something thatthey did.
It has to be all of that inorder to build that foundational
relationship.
Speaker 2 (18:42):
So, Nicole, I just want to thank you on behalf of a
lot of individuals withdisabilities and family members,
about how hard you work inWashington and the success that
you've had an increasingattention and awareness to, um,
the needs of people withdisabilities, specifically with
home and community-based waiversand the need for investment.
(19:03):
And you mentioned the directcare workforce crisis, which is
huge.
I know nationally, but veryacute in Wisconsin.
And I guess, um, I'm wonderinghow you're feeling, uh, in terms
of the future.
I mean, are you optimistic thatCongress will be making
investments that make people'slives better?
(19:24):
Do you feel as if the next sayfour years are going to make
some significant changes?
Speaker 3 (19:33):
Yeah.
So first of all, thank you.
Um, I think that, um, I amoptimistic and I'm, uh, I think
that, um, because of the workthat so many people did, when so
many things were under threatfor the past four or five years
when Medicaid, the programitself was under such a risk for
taking huge cuts and, and usknowing how that would impact
(19:54):
the service system for peoplewith disabilities and their
families.
I think that's why we have thatfoundation of support.
Um, it wasn't, you know, four orfive years ago, there were a lot
of legislators that didn't evenknow the difference between
Medicare and Medicaid, and thatdoesn't exist.
A lot of this has happened evenin my short tenure six years.
Um, and I'm not saying thatthat's because of me, it's
because of the work thateverybody has done, that every
(20:16):
member, every person that's,that's part of the disability
community, and also the I'moptimistic because of the fact
that we grew up, we're growingour influence outside of just
the disability community, thedisability community is
extremely powerful.
It's one of the, the, the groupsthat consistently gets called
out for the reason that we stillhave an affordable care act and
(20:36):
that those big Medicaid cutsdidn't happen, but we also have
to get out of our silos.
So we're working more withgroups that we might not have in
the past group that are women'sgroups, labor that are now
talking about community-basedservices that never happened
before.
All of that leads to greateraccess.
All of that leads to these hugeinvestments.
(20:57):
We've never seen a proposal thatincludes we were, we were
thrilled to get$12.7 billion forone year of funding in March.
And then two weeks later got anannouncement about$400 billion.
That's a concrete example of thesuccess.
And the, of the hugeunderstanding that there finally
is, I'm optimistic, but it'sstill going to take a lot of
(21:20):
work.
It's still going to take a lotof people, a lot of public
education, a lot of people whomight not have a personal
connection to someone with adisability or an aging adult,
caring about this issue to give,get us to where we ultimately
need to go, but I am extremelyoptimistic.
And I think that's why it's soimportant for folks to use times
(21:40):
like August recess and otherthings, because we have to keep
the pressure on, um, we can'tjust assume that this is
something that's done.
We have to remain vigilant.
Um, but I am optimistic that ifwe do, we can, we can get to a
place where every person with adisability has the services that
they need, um, in their homesand communities.
Speaker 2 (21:57):
Sure.
So, uh, any, any place to turnus toward more recesses help us
or more resources, resourcerecess, I'm getting it mixed up.
Where, where do I find moreresources about August recess?
Speaker 3 (22:11):
Yeah.
So we're putting together as wespeak, um, a toolkit that will
be available next week.
Actually anyone who's on thearts, um, lift.
Um, so if you're not thearc.org/action is a good place
to go.
You can sign up for a list, buteven if you don't, there's a
place where you can share yourstory.
There's a place where you canfind our action alerts that have
blurbs from, for the threepriorities that I talked about.
(22:33):
So I would definitely point youthere.
Um, and always check that ourblog that's where we post, um,
new information, uh, and that'swhere, we'll where we will be
posting next week, a blog thatBethany and I wrote under the
umbrella of care, can't wait,which is what, what theme kind
of, of our recess activities andtoolkits is going to be around.
(22:54):
Um, and, um, tying the issues ofHCBS and paid leave and social
security together about how theyall impact.
So, um, those are, those aresome, uh, quick places to go,
but definitely thearc.org/action, um, and, uh, is
always a good place to start.
Speaker 2 (23:10):
Okay.
I'll put that in the show notes.
So as we wrap up our timetogether, I just wanted to thank
you again for joining us.
I think our takeaways are, um,make sure you participate in
August recess, get yourmeetings.
Your top three priorities arethe 400 billion for HCBS paid
leave and the in income assetlimits for SSI.
(23:32):
Any other things you want tomake sure we remember before you
say goodbye, Nicole.
Speaker 3 (23:37):
Um, I just, I just want to want to remind folks
that I know it can beexhausting.
I know it can be tiring.
I know it can seem like we'refor, um, tweaks to the same
sentence over and over, but itreally is important.
We had over 200,000 actions toCongress that led us to that
12.7 billion and we're going toneed even more so don't, don't,
(23:59):
uh, get tired and don't getdiscouraged because we really
are on the precipice of thingsthat have been on the art's
priority list for decades.
And it's because of everybody.
And so we're, we're strongertogether and we'll keep moving
forward and I really appreciatethe timeliness.
Speaker 2 (24:17):
All right, everybody listening, make that call and
get that meeting participate inAugust recess.
Thank you so much, Nicole.
And thank you to our listenersof the art experience podcast on
your mostly some pew, please besure to like share and
subscribe.
And we'll talk to you next time.
Speaker 1 (24:35):
Today's episode of the Ark experience was brought
to you by the arc Wisconsin, thestate's oldest advocacy
organization for people withintellectual developmental
disabilities and their familiesit's funded in part by the
Wisconsin board for people withdevelopmental disabilities.
Our theme music called speciesis the property of[inaudible]
(24:57):
and cannot be copied ordistributed without permission.
It was produced by EleanorCheetham, a composer and artist
with autism.
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