November 1, 2021 • 19 mins
November is National Family Caregiver month. Did you know that One in five Wisconsinites (or 1.18M people) is estimated to be an unpaid caregiver? Wisconsin family caregivers provide more than 490 million unpaid hours of care annually to individuals with disabilities and older adults.
80 percent of all care is provided by families who help loved ones daily with meals, bathing and dressing, medications, doctor appointments and more.
Today’s guest is first and foremost Mom to Kelsey, who has Angelman Syndrome. Lisa has over 30 years’ experience advocating for persons with disabilities and navigating the complicated support system, including for her own daughter. She is also Executive Director of the Respite Care Association of Wisconsin.
Respite Care Association of Wisconsin: https://respitecarewi.org/
RCAW respite care provider registry: https://respitecarewi.org/registry/
Family Caregiver Month activities and resources: https://www.caregiver.org/news/celebrating-our-communities-caregivers/
Wisconsin Family and Caregiver Support Alliance (WFACSA): https://wisconsincaregiver.org/alliance
2021 Wisconsin Family Caregiver Month proclamation: https://arcwi.org/content/uploads/sites/17/2021/09/110121_Proclamation_Family-Caregiver-Month.pdf
The CUNA Mutual Group Foundation: Supporting the sustainable development of our communities.
Disclaimer: This post contains affiliate links. If you make a purchase, I may receive a commission at no extra cost to you.
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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 experienced, 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'm your host Lisa pew with thearc, Wisconsin and November is
family caregiver month.
Did you know that one in fiveWisconsinites that's 1.18
million people is estimated tobe an unpaid caregiver.
Wisconsin family caregiversprovide more than 490 million
(00:46):
unpaid hours of care annually toindividuals with disabilities
and older adults.
80% of all care in our state isprovided by families and they
are helping their loved onesdaily with meals, bathing,
dressing, medications, doctors,appointments, and more.
You likely know a familycaregiver in your community, and
maybe even you are a familycaregiver.
(01:07):
Today's guest is a familycaregiver she's first and
foremost, mom to Kelsey who hasAngelman syndrome.
I'm sure we'll be hearing a lotabout Kelsey and today's
podcast.
Lisa has over 30 years ofexperience advocating for people
with disabilities and navigatingthe complicated support system.
Lisa is our guest.
She is also executive directorto respite care association of
(01:30):
Wisconsin.
Welcome Lisa.
Speaker 3 (01:33):
Welcome and thanks for having me on today.
Oh, well,
Speaker 2 (01:35):
You're a perfect guest to help us kick off a
family caregiver month for avariety of reasons.
You know, first of all, Idefinitely want people to know
about the respite careassociation of Wisconsin.
Can we start there?
What is respite careassociation?
Why should people know about it?
Speaker 3 (01:51):
Sure.
Actually respite careassociation of Wisconsin is a
statewide organization thatwe're here to help family
caregivers with their supportneeds.
And, um, over the years we'vedeveloped five programs to
really be strategic and tryingto support family caregivers,
kind of the meat and potatoes ofwhat they need in regards to
getting a break, because that isso important oftentimes, and as
(02:12):
you know, and I know that, um,we, uh, our family is first and
we give it our all, butsometimes we get too much
without taking a break.
So we've developed some programsthat involve training.
So we do some recruitment to tryto find people to increase the
pool of trained respite careworkers in Wisconsin.
So we have, we offer acomprehensive portfolio of
(02:34):
training opportunities and, um,when people complete our
training, they're able to goonto our respite care registry
so that they are available, um,for people to find and to match
in order to provide, uh, to behired for cares in the home.
And it's okay for employers toeven go on there and look
because we want to just, again,increase that pool of, of folks,
(02:58):
um, to provide respite, um, andthe caregivers.
We also do a lot of outreach andeducation to, um, a number of,
um, online or virtual events.
And we have a number of grantsthat really, um, focus on
providing direct respite carefor family caregivers.
We P we provide, uh, grants torespite care provider agencies
so that if they can, they wantto expand their program to serve
(03:21):
some underserved populations,such as folks with tribes or
Hispanic or the African-Americancommunities.
There's some grant funds outthere for that.
Um, there's a whole number of,uh, other grant programs that
are very specific, but allrelated to respite care.
Um, we also have a comprehensiveresource page and we have it
divvied up between, um, uh,children, adults, and older
(03:43):
adults.
So you don't have to go througha whole bunch of stuff.
You can kind of hone in on whatyou're looking for.
And then again, with theirregistry of trained workers that
we have currently, we have aboutseven 16 people on our registry
that, um, can be searched bycounty.
And by age of your loved one,whether it's a child that belts
or an older adult, andhopefully,
Speaker 2 (04:03):
Yeah.
How many people on thatregistry, I just want to make
sure that people hear that, oh,
Speaker 3 (04:07):
There's 216 on the registry right now,
Speaker 2 (04:10):
216.
What an awesome resource thatregistry is to people in
Wisconsin.
I bet there are a lot of folkslistening that didn't even know
that that existed.
Do you get people calling youthat are like, wow, thank you.
I didn't know that you had sucha thing
Speaker 3 (04:24):
All the time.
It, because everything we offeris free as well.
So there are some other programsthat are out there are
registries or places where youcan find workers.
Oftentimes you have to pay asubscription because of how
we're funding.
We offer everything for free andpeople have a hard time, you
know, we're not an employer, sowe're not competing with
anybody.
We're just really here to be asupport system for family
(04:46):
caregivers.
Speaker 2 (04:48):
Wonderful.
You know, and I learnedsomething and, you know, you
probably could talk the wholepodcast about all the things
that Ricard does.
And I think we want to make surethat people can go to your
website and find that, and we'llremind folks of what that is at
the end, but, um, you know, allthose grants, the registry that
must provide a lot of relief tofamily caregivers.
(05:09):
I'm wondering if you could talkabout like, when, when family
caregivers call you, what doesthat sound like?
What's ha what is happening forfamily caregivers right now in
Wisconsin and what, what what'shappening when they call you for
help?
Speaker 3 (05:24):
Well, um, a lot of the times they're calling when
they're already at that point ofsevere distress, and they're not
knowing what to do, not knowingwhere to start and with the
staff that we have.
That's the one really, um, thingthat I'm very proud of is staff
will take the time to listen towhat the, uh, family caregiver
is saying, because oftentimesthey don't know what they don't
(05:47):
know.
So they don't know what they'reasking for.
They don't know where to start,but we'll kind of help walk them
through the process.
And we do have a number ofpeople calling us because
there's an increasing amount oflong distance caregivers that
are emerging because of thingsthat are happening during COVID.
And again, the caregiverworkforce shortage, it's just
really been, um, a huge impactto families getting in, in their
(06:10):
care recipients, getting thecare that they need.
Um, when we walk people throughcertain, um, processes, we
usually identify resources, onethat we can help, or we, we kind
of serve as a no wrong doorapproach, even though, you know,
others do that, but that's, wejust won't pass the buck or, um,
uh, you know, not follow up withthem.
(06:30):
So we will walk them throughuntil they're connected their
program.
But some of the things, um, thatwe're really getting are people
are also calling us that are,um, coming relatives of, um,
relative caregivers of peoplethat aren't there like
biological children.
And there's a many reasons forthat.
But a lot of times people aren'tfamiliar with kinship care or
(06:51):
the absence, if you don't chooseto go into kitchen care, um,
we're able to help those folks.
So there's some just newemerging family, caregiver
issues that are coming up ratherthan just the standard ones.
And it just all is building andadding a little bit more to the
crisis, but we're trying to haveMedicaid that along with our
collaborative partners at youragency.
Yeah.
Speaker 2 (07:11):
Yeah.
I mean, when you meant, when youused the word crisis, I think
that definitely is the case.
I mean, those numbers that Ishared in the beginning, 80% of
all care provided by families490 million hours of care every
year.
That's a lot of care.
And I know I, you know, in theintroduction I talked about you
(07:33):
as a mom, to Kelsey, what, whatis that?
Can you talk a little bit aboutKelsey, who is Kelsey and kind
of what has been your owncaregiving story?
Speaker 3 (07:43):
Oh, I love to talk about Chelsea cause it's, it's
been a positive thing.
Experience-wise and um, soCassie has Angelman syndrome, so
she is non-verbal and hasintellectual and developmental
disabilities is ambulatory.
So I, you know, I feel veryfortunate with that, that I'm
able to get her around withtransportation.
Myself.
A lot of people are so relianton transportation and that's a
(08:05):
huge barrier from their lovedone being involved in the
community.
Um, with Kelsey, we have gonethrough a reprogram available,
uh, you know, from the app birthto three to early childhood to
while we were on the wait listfor ever for CLTs.
And we aged out before we evergot on that, but we did have
access to what was called.
(08:26):
It was called family supportfunds.
Um, I think it's the C cap fundsthat are re referred to now.
Then we transitioned in, um, toa family, share a long-term care
and then switched over to IRS.
But I feel like we've hit all ofthese different programs and we
just, so we kind of walk thetalk, but with Kelsey, she has
this, um, innate ability.
(08:48):
And I think we can all talkabout that with our kids, that
they have this sixth sense,sixth sense, um, in judging
people or knowing a good personwithout having to even talk with
them.
There's just a gift that theyhave.
And throughout this time we'vebeen really lucky and having,
um, RSP care worker, Anna, whohas just been a godsend, um, she
(09:12):
came to us and actuallyapproached us.
I didn't have to seek her.
And she wrote a note in Kelsey'sbackpack.
She worked for an agency andsaid, I want to hang with
Kelsey.
She's so much fun.
And how many times do you getnotes like that?
Like never happens.
And I'm like, you want to hangwith my kid really?
And I'm like, I'll pay you.
(09:32):
I was like jumping at the bitto, to engage with her.
And fortunately I engagement hasreally paid off.
We have had Anna in our livesfor over 10 years now.
And Anna we've had her come tothe EPS.
I've had her come to the doctorwith me.
Um, I involved her in a lot of,um, decision-making processes
(09:53):
because anesthesia is anotherside of Kelsey that I don't see
and that others don't see.
And so, um, involving yourrespite care worker in, um, a
life and the needs and, um, uh,resources for your loved one is,
is really key again for thatlong-term cure, um,
relationship.
And what's even nicer on top ofthat.
And I was talking to you alittle bit about that earlier,
(10:15):
before we started is Anna'sdaughter.
Now, um, her name is Lydia andshe has been, um, 17 now.
And Kelsey has been a part ofher family for more than half of
her life.
So Lydia has asked to helpprovide care for Kelsey.
And, um, we just started thisweek.
And again, just for nurturingthat relationship, now, I'm
going to the next generationthat I'm, I can't say how
(10:39):
excited I am about that.
So just again, those nurturingrelationships, relationships
with your workers is so key.
Okay.
Speaker 2 (10:47):
How wonderful it is that you have that key quality
worker in your life to supportnot only Kelsey, but you and
your role as a family caregiverha and how fortunate that is and
actually rare.
I'm sure you would agree.
That's rare that familycaregivers have that level of
support.
(11:07):
Hey, Lisa, I want to keeptalking about this.
Um, I'm going to take a shortbreak and we're going to hear
more from you.
Speaker 1 (11:14):
Today's episode is sponsored by the CUNA mutual
group foundation, supporting thesustainable development of our
communities.
We believe that a brighterfinancial future should be
accessible to everyone no matterwhere they're starting from.
Speaker 2 (11:29):
We'll come back.
We are talking to Lisa Schneiderwith the respite care
association.
She was just talking to us abouther role as a family caregiver
and the great support she hasfrom a direct care worker.
But we know that these, you know, uh, 80% of family caregivers
in Wisconsin who are familymembers really are in a crisis.
And that's part of the reasonwhy we recognize November as
(11:52):
family caregiver month and tryto create some awareness.
Lisa, you are also, um, the coleader of the Wisconsin family
and caregiver support Alliance,which we both belong to.
I'm wondering, can you give us asense for why family caregiver
month is important and what youhope happens during family
caregiver month?
Speaker 3 (12:11):
Well, November, uh, national caregiver month is a
great opportunity to heightenthe awareness of family,
caregiver issues.
One of the tremendous amount ofwork that they do as you talked
earlier about the number ofhours that they provide that are
unpaid.
And, uh, many of these folks arealso trying to balance, um, work
and caregiving and just the restof their life and sort of create
(12:33):
some awareness about that sothat more people are aware of
it.
And hopefully even moreemployers become aware that they
probably have caregivers thatare, that they're employed.
They're not even aware of.
So to create that awareness andto also help engage family
caregivers, to maybe be moreself-aware that they identify as
a family, caregiver themselvesall too often, they don't
(12:54):
recognize themselves as a familycaregiver and they really are,
and that they need to know thatthere's supports and resources
out there for them.
So they create that awarenessand kinda, you know, get people
excited about, wow, you know, Ididn't know, you know, there was
a little of these things outthere.
That's an opportunity again, toshare resources and to just know
(13:14):
that we're here and to also giveothers opportunities, to find
ways to engage family caregiversin how they can help them, as
opposed to say, oh, I couldn'tdo the work that you do.
Um, I don't know how you do itall.
What can I do to help, you know,you want me to bring a meal?
Do you want me to bring them upeight forthright in you're
asking, uh, how to help a familycaregivers?
(13:36):
And so we had to provide someideas and insight of how
beneficial side is.
Speaker 2 (13:41):
Yeah.
You know, I think the things yousaid about, you know, the number
of hours that, uh, caregiversprovide and the impact on their
work, just a few data pointsaround that.
Um, we know that Wisconsincaregivers report provided about
an average of 41 hours of careper week, and that half of
caregivers report that theyactually have cut back on the
(14:04):
hours that they're working orvolunteering at jobs outside in
the community because of theircaregiving.
And then that of course, resultsto, you know, lost income for
them and maybe impacts theirretirement.
Um, also I know that caregiversspend a lot of their own money
in their caregiving role,whether it purchasing things or
(14:25):
again, if they're hiring helpout of pocket.
Um, so, you know, I think it'sso important that we have the
respite care association ofWisconsin and all the great work
that you do.
So thank you for that.
I wonder if in your role as acaregiver and also in your role
as executive director of therespite care association of
(14:45):
Wisconsin, what are your kind ofwords for other family
caregivers who are trying tohang on?
Like what, what, what can yousay to them about, um, their
role and, um, maybe to offersome comfort?
Speaker 3 (15:00):
Well, I, I do think that as much as COVID has been a
negative impact, it has shined alight on the caregiver issue,
especially family caregivers.
And, um, so hopefully some goodcan come out of that in regards
to, um, you know, lot of timespeople aren't, uh, don't take
interest in an issue until itaffects them.
(15:21):
And I think a lot of people hadit affect them during the Kobe,
um, pandemic.
So this is an opportunity formore people to, um, do raise
their voice.
I think with the work of thegovernor's task force on
caregiving, the recommendationsthat are still being worked on,
um, that those are things thatsome of these family caregivers
can get behind so that we canmake some of them come to
(15:44):
fruition.
And similarly with the currentres ad and the report that just
came out for, um, um, from theres, uh, council that they just
provided a report to Congress.
Um, and for those who don'tknow, res stands for recognize,
assist, include support, andengage.
This will eventually become anopportunity for all the family
(16:05):
caregivers to have a voice aswell.
And it's important for them tohave that voice, because that is
really to tell legislators, hearyou, um, that is when things are
going to change.
And so, um, do use your voice toaffect that change.
That's, that's gonna be the bestway possible for caregivers to
get the supports and resourcesthat they need.
(16:26):
Yeah.
Speaker 2 (16:26):
Lisa, you do such a good job of that.
I know that you have legislatorsof both parties that participate
in respite care association ofWisconsin.
You have relationships with yourelected officials.
I know it seems like one extrathing to ask family caregivers
to kind of do that.
But I mean, it really is assimple as telling your family
(16:47):
caregiving story to anotherperson in a way to help them
understand what your day to daylife looks like.
Right.
Lisa.
Yeah,
Speaker 3 (16:55):
Absolutely.
And even with things, um, that,that aren't so obvious, but when
for those who are impacted, um,it's devastating.
And we were just on a callyesterday and the Northwestern
part of Wisconsin, and they weretalking to us about, um, uh,
transportation issues.
There's a lack of transportationup there.
(17:15):
And I should say transit ofdurable medical equipment,
there's a Hoyer lift shortage upthere.
And you've got folks that reallyneed to be changed and moved
that are non-weightbearing and,um, and not have those kind of
tools out there.
Um, and whether that's in anadult day center or whatever
(17:37):
that affects again, the qualityof care that family caregivers,
what peace of mind from that.
And when there's always theseglitches in these systems, um,
we gotta, we gotta work on this.
And so just finding out aboutlittle tweaky, things like that,
um, are things that we should bebringing to the attention of our
legislators, that, that theyreally understand what's going
on.
That it's not just sending aperson, it's getting the
(17:59):
transportation, it's getting theproduct, it's getting the people
in.
It's just the big thing, but ourvoices are powerful and there's
power in numbers.
So this is a good chance for usto work together.
Speaker 2 (18:11):
Lisa, we are so fortunate to have you in the
role that you're in, inWisconsin, as a family caregiver
advocating on behalf of peoplewith disabilities and older
adults and other familycaregivers.
I really thank you for that.
Speaker 3 (18:24):
Thank you so happy to be here.
Speaker 2 (18:26):
All right, Lisa, I want to make sure that folks
who've been listening, know howto get ahold of you.
Could you tell us how do we findthe respite care association of
Wisconsin?
Speaker 3 (18:34):
Sure.
The best place to find this ison the web.
You guys can go to www thatrespite care w I org, or you can
give us a call at six oh eighttwo two two zero three three.
I know you guys may not have apen handy, so I'll repeat that
again.
It's 6 0 8 0 3 3.
Speaker 2 (18:57):
Okay.
Thank you so much for joiningus, Lisa.
Speaker 3 (19:00):
This was wonderful.
Thank you for having me.
Speaker 2 (19:03):
All right.
Thank you to our listeners.
Make sure you think a familycaregiver this month very
important, and please be sure tolike share and subscribe until
next time
Speaker 1 (19:12):
Today's episode of the arc 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]
(19:34):
and cannot be copied ordistributed without permission.
It was produced by EleanorCheetham, a composer and artist
with autism.
Welcome to the arc experienced, 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'm your host Lisa pew with thearc, Wisconsin and November is
family caregiver month.
Did you know that one in fiveWisconsinites that's 1.18
million people is estimated tobe an unpaid caregiver.
Wisconsin family caregiversprovide more than 490 million
(00:46):
unpaid hours of care annually toindividuals with disabilities
and older adults.
80% of all care in our state isprovided by families and they
are helping their loved onesdaily with meals, bathing,
dressing, medications, doctors,appointments, and more.
You likely know a familycaregiver in your community, and
maybe even you are a familycaregiver.
(01:07):
Today's guest is a familycaregiver she's first and
foremost, mom to Kelsey who hasAngelman syndrome.
I'm sure we'll be hearing a lotabout Kelsey and today's
podcast.
Lisa has over 30 years ofexperience advocating for people
with disabilities and navigatingthe complicated support system.
Lisa is our guest.
She is also executive directorto respite care association of
(01:30):
Wisconsin.
Welcome Lisa.
Speaker 3 (01:33):
Welcome and thanks for having me on today.
Oh, well,
Speaker 2 (01:35):
You're a perfect guest to help us kick off a
family caregiver month for avariety of reasons.
You know, first of all, Idefinitely want people to know
about the respite careassociation of Wisconsin.
Can we start there?
What is respite careassociation?
Why should people know about it?
Speaker 3 (01:51):
Sure.
Actually respite careassociation of Wisconsin is a
statewide organization thatwe're here to help family
caregivers with their supportneeds.
And, um, over the years we'vedeveloped five programs to
really be strategic and tryingto support family caregivers,
kind of the meat and potatoes ofwhat they need in regards to
getting a break, because that isso important oftentimes, and as
(02:12):
you know, and I know that, um,we, uh, our family is first and
we give it our all, butsometimes we get too much
without taking a break.
So we've developed some programsthat involve training.
So we do some recruitment to tryto find people to increase the
pool of trained respite careworkers in Wisconsin.
So we have, we offer acomprehensive portfolio of
(02:34):
training opportunities and, um,when people complete our
training, they're able to goonto our respite care registry
so that they are available, um,for people to find and to match
in order to provide, uh, to behired for cares in the home.
And it's okay for employers toeven go on there and look
because we want to just, again,increase that pool of, of folks,
(02:58):
um, to provide respite, um, andthe caregivers.
We also do a lot of outreach andeducation to, um, a number of,
um, online or virtual events.
And we have a number of grantsthat really, um, focus on
providing direct respite carefor family caregivers.
We P we provide, uh, grants torespite care provider agencies
so that if they can, they wantto expand their program to serve
(03:21):
some underserved populations,such as folks with tribes or
Hispanic or the African-Americancommunities.
There's some grant funds outthere for that.
Um, there's a whole number of,uh, other grant programs that
are very specific, but allrelated to respite care.
Um, we also have a comprehensiveresource page and we have it
divvied up between, um, uh,children, adults, and older
(03:43):
adults.
So you don't have to go througha whole bunch of stuff.
You can kind of hone in on whatyou're looking for.
And then again, with theirregistry of trained workers that
we have currently, we have aboutseven 16 people on our registry
that, um, can be searched bycounty.
And by age of your loved one,whether it's a child that belts
or an older adult, andhopefully,
Speaker 2 (04:03):
Yeah.
How many people on thatregistry, I just want to make
sure that people hear that, oh,
Speaker 3 (04:07):
There's 216 on the registry right now,
Speaker 2 (04:10):
216.
What an awesome resource thatregistry is to people in
Wisconsin.
I bet there are a lot of folkslistening that didn't even know
that that existed.
Do you get people calling youthat are like, wow, thank you.
I didn't know that you had sucha thing
Speaker 3 (04:24):
All the time.
It, because everything we offeris free as well.
So there are some other programsthat are out there are
registries or places where youcan find workers.
Oftentimes you have to pay asubscription because of how
we're funding.
We offer everything for free andpeople have a hard time, you
know, we're not an employer, sowe're not competing with
anybody.
We're just really here to be asupport system for family
(04:46):
caregivers.
Speaker 2 (04:48):
Wonderful.
You know, and I learnedsomething and, you know, you
probably could talk the wholepodcast about all the things
that Ricard does.
And I think we want to make surethat people can go to your
website and find that, and we'llremind folks of what that is at
the end, but, um, you know, allthose grants, the registry that
must provide a lot of relief tofamily caregivers.
(05:09):
I'm wondering if you could talkabout like, when, when family
caregivers call you, what doesthat sound like?
What's ha what is happening forfamily caregivers right now in
Wisconsin and what, what what'shappening when they call you for
help?
Speaker 3 (05:24):
Well, um, a lot of the times they're calling when
they're already at that point ofsevere distress, and they're not
knowing what to do, not knowingwhere to start and with the
staff that we have.
That's the one really, um, thingthat I'm very proud of is staff
will take the time to listen towhat the, uh, family caregiver
is saying, because oftentimesthey don't know what they don't
(05:47):
know.
So they don't know what they'reasking for.
They don't know where to start,but we'll kind of help walk them
through the process.
And we do have a number ofpeople calling us because
there's an increasing amount oflong distance caregivers that
are emerging because of thingsthat are happening during COVID.
And again, the caregiverworkforce shortage, it's just
really been, um, a huge impactto families getting in, in their
(06:10):
care recipients, getting thecare that they need.
Um, when we walk people throughcertain, um, processes, we
usually identify resources, onethat we can help, or we, we kind
of serve as a no wrong doorapproach, even though, you know,
others do that, but that's, wejust won't pass the buck or, um,
uh, you know, not follow up withthem.
(06:30):
So we will walk them throughuntil they're connected their
program.
But some of the things, um, thatwe're really getting are people
are also calling us that are,um, coming relatives of, um,
relative caregivers of peoplethat aren't there like
biological children.
And there's a many reasons forthat.
But a lot of times people aren'tfamiliar with kinship care or
(06:51):
the absence, if you don't chooseto go into kitchen care, um,
we're able to help those folks.
So there's some just newemerging family, caregiver
issues that are coming up ratherthan just the standard ones.
And it just all is building andadding a little bit more to the
crisis, but we're trying to haveMedicaid that along with our
collaborative partners at youragency.
Yeah.
Speaker 2 (07:11):
Yeah.
I mean, when you meant, when youused the word crisis, I think
that definitely is the case.
I mean, those numbers that Ishared in the beginning, 80% of
all care provided by families490 million hours of care every
year.
That's a lot of care.
And I know I, you know, in theintroduction I talked about you
(07:33):
as a mom, to Kelsey, what, whatis that?
Can you talk a little bit aboutKelsey, who is Kelsey and kind
of what has been your owncaregiving story?
Speaker 3 (07:43):
Oh, I love to talk about Chelsea cause it's, it's
been a positive thing.
Experience-wise and um, soCassie has Angelman syndrome, so
she is non-verbal and hasintellectual and developmental
disabilities is ambulatory.
So I, you know, I feel veryfortunate with that, that I'm
able to get her around withtransportation.
Myself.
A lot of people are so relianton transportation and that's a
(08:05):
huge barrier from their lovedone being involved in the
community.
Um, with Kelsey, we have gonethrough a reprogram available,
uh, you know, from the app birthto three to early childhood to
while we were on the wait listfor ever for CLTs.
And we aged out before we evergot on that, but we did have
access to what was called.
(08:26):
It was called family supportfunds.
Um, I think it's the C cap fundsthat are re referred to now.
Then we transitioned in, um, toa family, share a long-term care
and then switched over to IRS.
But I feel like we've hit all ofthese different programs and we
just, so we kind of walk thetalk, but with Kelsey, she has
this, um, innate ability.
(08:48):
And I think we can all talkabout that with our kids, that
they have this sixth sense,sixth sense, um, in judging
people or knowing a good personwithout having to even talk with
them.
There's just a gift that theyhave.
And throughout this time we'vebeen really lucky and having,
um, RSP care worker, Anna, whohas just been a godsend, um, she
(09:12):
came to us and actuallyapproached us.
I didn't have to seek her.
And she wrote a note in Kelsey'sbackpack.
She worked for an agency andsaid, I want to hang with
Kelsey.
She's so much fun.
And how many times do you getnotes like that?
Like never happens.
And I'm like, you want to hangwith my kid really?
And I'm like, I'll pay you.
(09:32):
I was like jumping at the bitto, to engage with her.
And fortunately I engagement hasreally paid off.
We have had Anna in our livesfor over 10 years now.
And Anna we've had her come tothe EPS.
I've had her come to the doctorwith me.
Um, I involved her in a lot of,um, decision-making processes
(09:53):
because anesthesia is anotherside of Kelsey that I don't see
and that others don't see.
And so, um, involving yourrespite care worker in, um, a
life and the needs and, um, uh,resources for your loved one is,
is really key again for thatlong-term cure, um,
relationship.
And what's even nicer on top ofthat.
And I was talking to you alittle bit about that earlier,
(10:15):
before we started is Anna'sdaughter.
Now, um, her name is Lydia andshe has been, um, 17 now.
And Kelsey has been a part ofher family for more than half of
her life.
So Lydia has asked to helpprovide care for Kelsey.
And, um, we just started thisweek.
And again, just for nurturingthat relationship, now, I'm
going to the next generationthat I'm, I can't say how
(10:39):
excited I am about that.
So just again, those nurturingrelationships, relationships
with your workers is so key.
Okay.
Speaker 2 (10:47):
How wonderful it is that you have that key quality
worker in your life to supportnot only Kelsey, but you and
your role as a family caregiverha and how fortunate that is and
actually rare.
I'm sure you would agree.
That's rare that familycaregivers have that level of
support.
(11:07):
Hey, Lisa, I want to keeptalking about this.
Um, I'm going to take a shortbreak and we're going to hear
more from you.
Speaker 1 (11:14):
Today's episode is sponsored by the CUNA mutual
group foundation, supporting thesustainable development of our
communities.
We believe that a brighterfinancial future should be
accessible to everyone no matterwhere they're starting from.
Speaker 2 (11:29):
We'll come back.
We are talking to Lisa Schneiderwith the respite care
association.
She was just talking to us abouther role as a family caregiver
and the great support she hasfrom a direct care worker.
But we know that these, you know, uh, 80% of family caregivers
in Wisconsin who are familymembers really are in a crisis.
And that's part of the reasonwhy we recognize November as
(11:52):
family caregiver month and tryto create some awareness.
Lisa, you are also, um, the coleader of the Wisconsin family
and caregiver support Alliance,which we both belong to.
I'm wondering, can you give us asense for why family caregiver
month is important and what youhope happens during family
caregiver month?
Speaker 3 (12:11):
Well, November, uh, national caregiver month is a
great opportunity to heightenthe awareness of family,
caregiver issues.
One of the tremendous amount ofwork that they do as you talked
earlier about the number ofhours that they provide that are
unpaid.
And, uh, many of these folks arealso trying to balance, um, work
and caregiving and just the restof their life and sort of create
(12:33):
some awareness about that sothat more people are aware of
it.
And hopefully even moreemployers become aware that they
probably have caregivers thatare, that they're employed.
They're not even aware of.
So to create that awareness andto also help engage family
caregivers, to maybe be moreself-aware that they identify as
a family, caregiver themselvesall too often, they don't
(12:54):
recognize themselves as a familycaregiver and they really are,
and that they need to know thatthere's supports and resources
out there for them.
So they create that awarenessand kinda, you know, get people
excited about, wow, you know, Ididn't know, you know, there was
a little of these things outthere.
That's an opportunity again, toshare resources and to just know
(13:14):
that we're here and to also giveothers opportunities, to find
ways to engage family caregiversin how they can help them, as
opposed to say, oh, I couldn'tdo the work that you do.
Um, I don't know how you do itall.
What can I do to help, you know,you want me to bring a meal?
Do you want me to bring them upeight forthright in you're
asking, uh, how to help a familycaregivers?
(13:36):
And so we had to provide someideas and insight of how
beneficial side is.
Speaker 2 (13:41):
Yeah.
You know, I think the things yousaid about, you know, the number
of hours that, uh, caregiversprovide and the impact on their
work, just a few data pointsaround that.
Um, we know that Wisconsincaregivers report provided about
an average of 41 hours of careper week, and that half of
caregivers report that theyactually have cut back on the
(14:04):
hours that they're working orvolunteering at jobs outside in
the community because of theircaregiving.
And then that of course, resultsto, you know, lost income for
them and maybe impacts theirretirement.
Um, also I know that caregiversspend a lot of their own money
in their caregiving role,whether it purchasing things or
(14:25):
again, if they're hiring helpout of pocket.
Um, so, you know, I think it'sso important that we have the
respite care association ofWisconsin and all the great work
that you do.
So thank you for that.
I wonder if in your role as acaregiver and also in your role
as executive director of therespite care association of
(14:45):
Wisconsin, what are your kind ofwords for other family
caregivers who are trying tohang on?
Like what, what, what can yousay to them about, um, their
role and, um, maybe to offersome comfort?
Speaker 3 (15:00):
Well, I, I do think that as much as COVID has been a
negative impact, it has shined alight on the caregiver issue,
especially family caregivers.
And, um, so hopefully some goodcan come out of that in regards
to, um, you know, lot of timespeople aren't, uh, don't take
interest in an issue until itaffects them.
(15:21):
And I think a lot of people hadit affect them during the Kobe,
um, pandemic.
So this is an opportunity formore people to, um, do raise
their voice.
I think with the work of thegovernor's task force on
caregiving, the recommendationsthat are still being worked on,
um, that those are things thatsome of these family caregivers
can get behind so that we canmake some of them come to
(15:44):
fruition.
And similarly with the currentres ad and the report that just
came out for, um, um, from theres, uh, council that they just
provided a report to Congress.
Um, and for those who don'tknow, res stands for recognize,
assist, include support, andengage.
This will eventually become anopportunity for all the family
(16:05):
caregivers to have a voice aswell.
And it's important for them tohave that voice, because that is
really to tell legislators, hearyou, um, that is when things are
going to change.
And so, um, do use your voice toaffect that change.
That's, that's gonna be the bestway possible for caregivers to
get the supports and resourcesthat they need.
(16:26):
Yeah.
Speaker 2 (16:26):
Lisa, you do such a good job of that.
I know that you have legislatorsof both parties that participate
in respite care association ofWisconsin.
You have relationships with yourelected officials.
I know it seems like one extrathing to ask family caregivers
to kind of do that.
But I mean, it really is assimple as telling your family
(16:47):
caregiving story to anotherperson in a way to help them
understand what your day to daylife looks like.
Right.
Lisa.
Yeah,
Speaker 3 (16:55):
Absolutely.
And even with things, um, that,that aren't so obvious, but when
for those who are impacted, um,it's devastating.
And we were just on a callyesterday and the Northwestern
part of Wisconsin, and they weretalking to us about, um, uh,
transportation issues.
There's a lack of transportationup there.
(17:15):
And I should say transit ofdurable medical equipment,
there's a Hoyer lift shortage upthere.
And you've got folks that reallyneed to be changed and moved
that are non-weightbearing and,um, and not have those kind of
tools out there.
Um, and whether that's in anadult day center or whatever
(17:37):
that affects again, the qualityof care that family caregivers,
what peace of mind from that.
And when there's always theseglitches in these systems, um,
we gotta, we gotta work on this.
And so just finding out aboutlittle tweaky, things like that,
um, are things that we should bebringing to the attention of our
legislators, that, that theyreally understand what's going
on.
That it's not just sending aperson, it's getting the
(17:59):
transportation, it's getting theproduct, it's getting the people
in.
It's just the big thing, but ourvoices are powerful and there's
power in numbers.
So this is a good chance for usto work together.
Speaker 2 (18:11):
Lisa, we are so fortunate to have you in the
role that you're in, inWisconsin, as a family caregiver
advocating on behalf of peoplewith disabilities and older
adults and other familycaregivers.
I really thank you for that.
Speaker 3 (18:24):
Thank you so happy to be here.
Speaker 2 (18:26):
All right, Lisa, I want to make sure that folks
who've been listening, know howto get ahold of you.
Could you tell us how do we findthe respite care association of
Wisconsin?
Speaker 3 (18:34):
Sure.
The best place to find this ison the web.
You guys can go to www thatrespite care w I org, or you can
give us a call at six oh eighttwo two two zero three three.
I know you guys may not have apen handy, so I'll repeat that
again.
It's 6 0 8 0 3 3.
Speaker 2 (18:57):
Okay.
Thank you so much for joiningus, Lisa.
Speaker 3 (19:00):
This was wonderful.
Thank you for having me.
Speaker 2 (19:03):
All right.
Thank you to our listeners.
Make sure you think a familycaregiver this month very
important, and please be sure tolike share and subscribe until
next time
Speaker 1 (19:12):
Today's episode of the arc 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]
(19:34):
and cannot be copied ordistributed without permission.
It was produced by EleanorCheetham, a composer and artist
with autism.
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