Recognizing Youth Caregivers with guest Connie Siskowski

Connie Siskowski, President of the American Association of Caregiving Youth, joins us to discuss youth caregivers. Her program recognizes and supports young people who are caregivers

Find out more about the American Association of Caregiving Youth

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Episode Transcript

(00:11):
Welcome to Love doesn't pay the bills. I'm Lisa Chuty. I am a
family caregiver. My guest today isthe president of the American Association of Caregiving
Youth. She obtained her PhD intwo thousand and four from Lynn University to
have a bigger voice for family caregivers. Welcome very much, Connie Siskowski.
Thank you. So I understand thatyour work is primarily with youth caregivers and

(00:38):
what ages you to define as ayouth caregiver, Well, anyone who's a
minor. We begin our support ofchildren beginning in middle school in sixth grade,
so they're about eleven. But werealize that, you know, da
day one of middle school, Dayone of sixth grade isn't day one of

(00:59):
their caregiving. Of course, itjust happens to be where you focus then,
yeah. Yeah, And it's interestingbecause more and more elementary schools are
calling, you know, and seeingif we could start earlier. Wow,
Approximately how many youth caregivers are therein the United States that would be miners,

(01:21):
Well, we know that there's morethan five point four million, and
that's just based on a survey ofadults who have children in their home and
others. But we're waiting for datafrom the GAO. They've been federally requested
and accepted the request to conduct anew national survey. Sure, it seems

(01:46):
like important information to have. Yeah, exactly we know in Florida according to
twenty nineteen Youth Risk Behavior Survey,that there's more than two hundred and ninety
thousand middle and highest public middle andhigh school students in this role. And

(02:09):
so that doesn't include kids that arein Florida virtual or who attend private school
or charter schools. So we knowthat there's many more than two hundred and
ninety thousand distant Florida alone. Wow, and how do you just find Lisa
Mass just say at that same time, there were fifteen thousand children of all

(02:35):
ages who were in foster care andninety five thousand children of all ages who
were homeless. And those two groupshave public support and caregiving. Youth do
not, even though there's so manymore of them, right, and it

(02:55):
is an important need that they wouldhave. Along with caregivings are important needs
that children would have. Yeah,they're at there an at risk population because
we know from another study that ofyoung adults who had dropped out of school.
That twenty two percent said it wasto care for our family member.

(03:16):
Oh wow, tell me more aboutthat figure. In the scope of that
was a study called the Silent Epidemic, and it looked at young adults who
had dropped out of school and lookedat why they had dropped out and so,
um, that was a statistic umthat number also needs to be updated.

(03:38):
Wow. Um, so it's asignificant reason even why children are dropping
out of school exactly, it's youknow, but with support, they stay
in school and graduate and go onto post secondary education. Right. So
our high school graduation rate and averageover eight years is ninety seven point nine

(04:01):
percent. That's a huge considering thatthese are at risk kids. Yeah,
I don't think my local public highschool has that graduation rate. Actually I
think it's lower. Yes, theyprobably don't the total high school. How
do you define a family caregiver asopposed to simply a family member or this

(04:26):
happens to be a child whose parentdoes have some kind of disability or care
needs or something like that. Howdo you define who's a caregiver? So
we do a screening process beginning inthe sixth grade, and so we ask
the kids, you know, ifthey care for somebody and if that person
is in their home or close by, and then we ask them what they

(04:50):
do and use a weighted index sothat some a Childhoo's doing activities of daily
living such as feeding or bathing,or dressing or helping with mobility and continence
care toileting that has a higher weightthan instrumental activities of daily living. And

(05:12):
then we asked them how much timethey spend during a school day and on
a non school day, and sowe call this their level of responsibility.
And so children that are in ourCaregiving Youth Project have are in the top
three of five levels. So mostof them spend at least twenty hours a

(05:38):
week in addition to their schoolwork.So that's a very significant chunk of time
and energy. Yeah, it's likehaving a part time job. And so
we do awards. We worked outwith a school district. We have a
formal agreement with them where we're ablethe kids in high school completely to log

(06:00):
and so we convert that into thelevel of responsibility and we award them prograded
community service hours. Because I don'tknow in Aragon, but here you have
to have so many community service hoursin order to graduate from high school,
and our kids don't have time togo and volunteer someplace outs or already volunteering

(06:23):
at home. Yes, it makesa lot of sense, and it truly
is already a volunteer position filling aneeded service. Right, they're not paid.
Yeah, So what do we knowabout the long term impact on kids
and use who are caregivers while they'restill growing up? You mentioned actually high

(06:45):
dropout rate where children site or youthsite caregiving for someone as a reason for
dropping out of high school. Whatare the other impacts that are known for
being a caregiver in your youth.If someone drops out, you know their
their taxable income is less. Um, they're more prone for disease, team

(07:10):
pregnancy, crime, substance misuse,and long term system dependency. So that's
why it's really a great investment inthese children to help them have personal and
academic success so that they have alife and a future of their own.

(07:30):
Plus, if they are supported,many want to go into some form of
healthcare and that's where we need alabor force in the future. Yeah,
that would be a really positive impactand something that would would be a win
win for everyone around that youth.So, yeah, exactly, because it's

(07:58):
there are positive ramifications, if youwill, because the kids have a purpose,
They they feel appreciated. In manycases, they learned skills that their
peers do not have. And actually, one of the kids who end up

(08:22):
going to college away from here said, you know when he graduated that he
finally realized the value of all thathe had learned while caregiving, because who
was so ahead of his peers whowere not caregivers. Yeah, that's fantastic.
I know for myself as an adultthat I have definitely learned a lot

(08:46):
of things by necessity from being acaregiver that would apply to a lot of
other activities or goals in life thatI might want to take on. Yeah.
Yeah, And can you get morespecific about how your program works and

(09:07):
what kids experience when they come throughyour your program? Sure? So,
and I forgive me, I saidkids again, but these are teenagers or
youth yea more than kids? Yeah, we say kids, okay, because
it's easy, easier to say caregivingkids. You know, there's even a

(09:31):
website kids or caregivers who so um, but we work with them in school
with skills building groups. We havea curriculum that we have developed that goes
from sixth grade through to US grade. We do individual support and we also
do lunch and learned sessions based onthe top diagnoses of the care receivers so

(09:56):
that people can learn, and thosesessions are open to school staff as well,
many many of whom you know alot of teachers and school staff or
women and you don't know what youdon't know, and you don't know where
to turn, and when you're workingand caregiving, it's a lot. So

(10:20):
if we can help them also,you know, it's really a blessing.
And in fact, it was interestingat the end of our foundation course,
the first which is a sixth weekprogram of skills building too. It's a
time when kids get to meet eachother. Sometimes they can live across the

(10:41):
street, and you know, whenthey come to school, they don't talk
about it. They want to benormal, and so at the end we
give them a certificate and have alittle party. And so one boy was
taking his cupcake. We thought hewas going to lunch, but he was
going to class and he had itin his and his teacher got so upset

(11:03):
and said to him, you know, you don't you're not supposed to bring
food in here. And I'm acaregiver too, and no one helps me,
so anyhouse, yeah, you know, so there's there's that level of
resentment. And then we do ahome visit by our social workers and that

(11:24):
allows us to see, uh,you know, to meet the family and
to see if there might be otherneeds because you know, I know others
know that it's impossible to learn whenyou're under stressed. So the more that
we can do to reduce stress notonly on the child but on the family,
that in turn has a ripple effecton the child. And so you

(11:50):
know, it might be a homesafety issue. We had a boy once
complain about his back hurting, andwhen we did a home visit, we
found that he and his mom we'relifting his brother, who was read bound
in his wheelchair. And they livedin a single family home that had a
high stoop and and so he andhis mom needed to lift his brother in

(12:15):
the wheelchair down the steps. Andso we were able to find somebody who
built her a ramp. And youknow, when you have high steps,
you can't do a rampant at youknow, eighty degrees or so. Of
course, the kids is like itfor skateboarding or something, but you have
to have a long slope, soand that's expensive. So that's that's one

(12:37):
example. We also provide restpit.We have a small pool of dollars for
that. And one of the thingsthat we found, well, you know,
it's up to the family when therestpit is provided. So one of
our families had restpit. It wasa grandmother who had Alpheimer's disease, and

(13:00):
so our student and his mom wouldgo for breakfast on a Saturday. You
know. We had another family thatwould go to church on a Sunday because
they had restpite. And we havefound over time that that sometimes the kids
don't mind doing caregiving tasks, butthey're not joyful about cleaning the house.

(13:24):
So um, we have expanded ourrestpiteum to use some of those dollars for
home cleaning. So someone doesn't getyou know, in home restpite with a
home health aid and cleaning, butone or the other, and not all
families get either. It's all ofour services are very needs driven and prioritized.

(13:46):
Yeah, I would imagine that youare in some sense triaging or putting
putting, Yeah, exactly the availableresources where you can see the most need
yeah, exactly. And then youknow, because the kids don't have time
to be a kid, we dosponsor of fun activities. We just had
a camp down this This was thefirst time we used this facility in North

(14:11):
Miami, and so one of theactivities was canoeing and our carega, the
used project director and a student werein the canoe and they were near a
mangrove area and there was an iguanain the mangrove and the iguana jumped into
the canoe and so our director woundup in the water. So that was

(14:35):
quite an eventful time. Yeah,but you know the other kids, the
kids enjoyed learning and doing something thatthey don't normally do. Um and they
also really enjoy making new friends andseeing that their world of caregiving is beyond

(15:03):
the scope of their their school.I want to go back for a second
to you mentioned the teacher that toldthe student, Hey, I'm a caregiver
and I don't get supports, andyou know it's I so want to build
a world and I can see ithappening where there is nobody who feels overwhelmed

(15:24):
with caregiving. We're like and it'sand nobody's doing more than they yeah,
nobody should have to, you know, and I'm hearing yeah, and I
am hearing like that, a lotof the needs for youth are very very
similar or the same as they arefor adult caregivers, and yet they probably
are met less well and less often. Being that absolutely you can think about

(15:50):
this. You know, we know, we have a lot of data about
employd family caregivers, and if youlook at the school as a work place
of the child, then you know, the similarities even are greater with kids
being late to school. And untilwe get this information into the curriculum of

(16:15):
school counselors and teachers and administrators andhealthcare people, you know, you don't
know what you don't know, sothey don't understand. And for instance,
we had a girl who who neededto take her mom to dialysis in the
morning and it took a little longer, and so she was late to class

(16:36):
and she got to tenon her teacherdidn't even ask her why she was late.
Yeah. So even though here wehave our program, we do educate
the teachers and the schools, butyou know, there's turnover, and say
at the start of the school year, the teachers and school staff get a

(16:59):
lot of them information and they mayjust forget, you know, yeah,
out of mind. A lot ofschools are so focused on their attendance because
it drives the dollars that they get, and that is something in general I
already have kind of a bugaboo aboutpersonally, but it's no, it's true

(17:22):
to understand. This is another reasonwhy that's really an inappropriate and unfair to
a lot of students. Is interestingto hear. Yeah, so I'm glad
you're doing education around that. UM. In terms of staff members at the
school, UM, I would imaginethere's a lot of ways in which staff
members becoming aware that their students areor might be caregivers is important. What

(17:48):
does that look like? We've talkedwe've talked about with the school system about
having you know, on their electronicrecords some kind of marker. But you
know, then then you think abouthealthcare and how you know, it's not

(18:08):
really on a plateau, and sometimesthe person may be more ill and sometimes
they're better, and and sometimes youknow what happens if the care receiver dies
because some of that impact remains surethat there's going to be a home brief

(18:32):
process of some sort exactly exactly,So, UM, just lots to work
on in addition to legislation and educatinglegislators. Yeah, what are the specific
public policy measures or laws that youare working on or advocating for. Well,

(18:56):
I served done the faculty for orthe Family Caregiver Council through ACL and
Health and Human Services, and Ithink I brought a voice of the children.
But you know that voice is little. There are so many more adult

(19:18):
caregiver supports and interests and data andvoters right because the kids don't vote,
So I think that makes a differencein future support. But we're working hard.
I think once we have the datafrom the GAO that that will really

(19:41):
be helpful and also the more thatwe can prove the return on investment in
investing in these children. So what'sinteresting is it so we have a Florida
Caregiving Youth Act, a work inprogress. There was a hiccup this year,

(20:02):
so hopefully next session we'll be ableto get it through. But also
what's interesting is that we heard frompeople in Rhode Island and they're they're very
progressive and they realize that more children, particularly those that are financially insecure,

(20:22):
have to help their family members workas well as the caregiving and so they're
looking at having a person in aschool like a go to person and that
will be aware of resources. Andso they have initiated a statewide policy within

(20:45):
the school district on behalf of caregivingyouth and have changed some of their graduation
criteria and they're more flexible in termsof what time the kids get to school
or you know, if they cando work after when they get home.
So we're still in the process ofworking with them and seeing what other resources

(21:11):
are in their state that can helpto support So for instance, here in
Florida, an example, we dida home visit and the mom had died
and the dad was not verbal,but he was well, except he was
born that way. And the grandmotherhad had a stroke. So when we

(21:33):
did the hombres that we found thegrandmother was sleeping on a mattress on the
floor. So one of the organizations, the nonprofits that we work with,
has a relationship with the furniture companyand so she was able to get beds,
you know, and just something littlelike that, the families can feel
cared about. And no grandmother shouldbe sleeping on the floor. It's not

(21:57):
little. I mean, my familyhas um, you know, always had
a roof of our heads and beenrelatively lucky. But we've experienced a lot
of moves and a lot of periodsof time where we were I would say
housing insecure, Like we were verynervous how much longer we could keep paying

(22:19):
our our rent or our mortgage andthat kind of thing. And gosh,
having a stable home now with acomfortable bed for each of us makes such
a difference compared to being in transition. The latest move, so to speak,

(22:44):
was that we actually lost our homein a wildfire, and so we
were scrambling for temporary accommodations. Andit's such a difference to be in that
kind of situation as opposed even thoughwe did have roofs of our heads the
whole time, you know, ofsome sort or another. But to be
in your own home where you caneven set up your particular accommodations or thinks

(23:06):
the way they worked for you andyou can and yeah, have a bed.
Yeah, that's really important. Ihave a sanctuary. Yeah. Sleep
is one of the most basic needsfor every human being, like comfortable,
safe place to sleep. Yeah,And you know, our kids often do

(23:29):
not sleep well because they're worried.We had one of our boys was living
with his grandmother and he would wakeup and then in the night when he
heard his grandmother go to the bathroom, and he was so afraid he would
follow something that he stayed awake untilshe got back to bed. But then,
um, he was tired in schooland he'd fall asleep in school and

(23:52):
then his grades would suffer. So, um, sleep is really really important.
We had another boy. His momran out of Medicaid dollars and her
prescription. She had mental health issues, and she would get up in the
middle of the night and start cooking, so he would have to get up

(24:15):
and get her back to bed andthen worry about getting back to sleep himselfs
So um, you know, andthen if the school nurse doesn't understand what's
going on with these children, thenyou know there's there's some of some discrimination
against them. That is I wouldcall that discrimination. And the fact that

(24:37):
we don't conceptualize use as caregivers andunderstand that this is even happening, that
these young needs young people have needsaround their caregiving is you know, I
would say, is discrimination. Andto put them in the same position as
a kid that's got uh, right, full night sleep and mom's knocking on

(25:03):
the door to wake him up andmade his breakfast like that's right, and
difference and so yeah, and soyou know, the the National Family Caregiver
Support Program that was signed by PresidentClinton in two thousands was attached to the

(25:26):
Older Americans Act, And so becauseof that, they have through the years
been age discriminators. You know,you have to be caring for somebody who's
older, or you have to beolder yourself. And so even though our
kids often care for a grandparent andoften for more than one person, they're
not eighteen or older. And so, um, it really is like reverse

(25:51):
age discrimination against caregiving youth. Andthat's one of the things that that has
to change. Yeah uh um,I said. Um. On a recent
podcast, I brought up that,you know, my until I had um
seen articles about youth caregivers recently,I hadn't really conceptualized of my own second

(26:15):
daughter, to the one that requiresa lot of care as her sister M
could be considered a caregiver. AndI went n asked her um after some
of the recent conversations I had,and she said, no, she didn't
really think she had been a caregiveruntil she chose to take it on pretty
recently now that she's a young adult. Um, I felt and I that
was that was um, you know, I feel like you know, her

(26:40):
having her dad and I there.And we did work pretty hard to make
sure that she didn't feel like shehad to do anything for her sister,
and she had choices and she hadthe ability to go out and do things
like um, play in her schoolband and the drum major and things like

(27:00):
that, and she you know,hang out with her friends and be a
kid, you know. Um.And so she she didn't conceptualize herself of
a character until fairly recently either.And so you can you can imagine,
you know, if you're a singleparent, right and the child is alone

(27:22):
and there's nobody else that it's reallyreally rough on them. And they worry
when they're in school. Yeah,it's just or or even even we have
an overnight camp as one of oursponsored activities for the kids, and even
though they're away, they still worry. They worry what's going to happen when

(27:44):
they're not there. They worry aboutcoming home from school and somebody has fallen.
So we work with a company thathas a that gives us a discounted
rate for a person or a personalemergency response system does it in case they
fall. But you know, whateverwe can do to decrease the wary and

(28:07):
the stress on the child. Yeah. See, Initially, when I started
looking into this topic, I feltkind of shocked and kind of guilty in
a way as an adult here,you know that, why are we letting
children be in that kind of situationwhere there aren't adult Why are we as
a collective society letting a youth bein a situation like that where there's not

(28:30):
enough relief yet alone another adults.It's like compounding the difficulty and concerns the
fact that it's a young person.I would imagine going back to sleep loss
like I would imagine a young personwhose brain is still developing. To lose

(28:51):
sleep impacts them lifelong, even muchmore than somebody who was already an adult
before. Maybe they were in thesituation where they were losing sleep well and
there's trauma leases. So I tookcare of my grandfather, as you may
have read about, and when Iwas in middle school, and I moved

(29:11):
into the living room to be closerto his bedroom, and I was the
one who took him medicine even inthe middle of the night, and I
was the one who found him nolonger breathing. So, in addition to
you know, the gender difference,which was pretty traumatic, finding him dead

(29:33):
was also very traumatic. And itwas at a time, you know,
years and years ago when trauma andchildren wasn't recognized, and then he wasn't
there in my life. You know, he was my hero, it was
my protector. He's the one thatgave me twenty five cents week allowance,
you know, so that was abig loss. So it had ramifications on

(29:59):
me as an adult. And sosome of this work is not only to
support the kids, but also totry and prevent them from having some of
the longer term consequences, right,or make sure that it is had it
in a positive direction overall, Likeyou mentioned some positive benefits to caregiving as
a youth, and I think that'sonly really going to happen with a lot

(30:22):
of supports. And yeah, ifyouth caregiverserve very often getting less than adult
caregivers, that's a really value.But you know, one of the times
we met with one of our Floridarepresentatives and he said, well, children

(30:44):
shouldn't be doing this. They shouldbe in foster care, you know.
But that's what lack of knowledge does. Yeah, I don't think splitting up
families for the sake of providing careis the answer to anything. Like we
did that with large institutions and itdid not work and it wasn't good for
anybody. If people have any questionsabout that, they can watch the movie,

(31:07):
whereas Molly, they can watch alot of other documentaries and resources that
are out there. Is splitting upfamily is where there's a high level of
caregiving need is not the answer clearly, right exactly. And you know if
if say the child was removed,then you have two ishes, you know,

(31:30):
needing foster care for the child pluswho's going to take care of their
loved one. What I was goingto say, Lisa, is that you
know when your care receiver dies.In addition to losing a sense of purpose
because now you don't have been anymore, there can also be guilt. And

(31:52):
even for me, like intellectually Iknow that if I had, you know,
taking my grandfather his medication early,like if I had awakened my alarm
clock was set for two o'clock,If if I had gone at one thirty.

(32:13):
I know that it wouldn't have madea difference, but you know,
you still think about the what ifand I'm sure that other caregivers feel that
too, you know, what ifI didn't do this? What if I
didn't do that? And as muchas you intellectually know that that you shouldn't
be having the what ifs, thatsometimes they just scoot into your mind and

(32:38):
you have to be aware of thatand to let that go. Yeah,
and with those kind of emotional repercussions, it makes sense that access to counselors
is really important, like no matterwhat age the caregter is, but probably

(33:00):
especially for children, and they probablyhave less access, right And you know,
is it when there's a lot ofattention now at mental health issues among
our whole population as well as children. But you know, if you look
at the spectrum of mental health andyou know only um, perhaps if you

(33:28):
if you say that there's a hundredpeople who have more anxiety and depressions such
as family caregivers do compared to theirnon caregiving peers. Only a small percentage
of those have a clinical needs wherethey're where they need medication. You know,
much more than that they need somejust some individual support and relationship,

(33:51):
not just one time, but overtime. Yeah, in general, I
think we do a really bad jobof handling grieving and death and so forth,
really for all of us, andI can only imagine that it impacts
youth more who are yeah, youknow, and it's not a it's not

(34:14):
a subject that most people are comfortablewith. I'm fortunate that I worked in
hospice when I first moved to Florida, and so that was kind of a
grounding experience for me. But also, you know, I think that that
again on the spectrum of mental healthissues and support. We just had our

(34:36):
graduation celebration of our kids who whowere seniors, and our family specialists,
who are primarily social workers, hadnominated students who they felt to get an
extra award. We had a specialdonation to allow us to do that,
and there were ten students who werenominated. Only one of those with us

(35:00):
one year, with us five years, and the majority were six and seven
years. So this work isn't youknow, giving a sleeping film. It's
not feeding somebody, it's not buildinga ramp. It's you know, a

(35:20):
multitude of things covering systems of healthcareeducation in the community over time. As
one boy said to me, youknow, you're I feel like you're in
my back pocket. And you knowthat that's just such a nice analogy,
and you wish that we could bein everyone's back pocket. But everybody needs
somebody in their back pocket, andthey also need And I've spoken about this

(35:46):
when I've spoken with groups about adultfamily caregivers. You need to have a
plan by you know, because lifehappens, and it happened when we're not
aware of it. So you know, if you become sick, you know
who is going to be your bootson the ground. Yeah, I mean,

(36:09):
I've heard it said that one ofthe best you know, people do
things like planning for the apocalypse andwhatever, their preppers and all this kind
of stuff. And I've heard itsaid that one of the best things you
can do, anyone can do tobe safe is to be known by your
neighbors and know your neighbors. AndI'm coming, I mean, listening to

(36:31):
you talk, I'm I'm reflecting moreon the importance of those really long term
relationships. Like my daughter is muchbetter off because her dad and sister and
I have all remained in her lifeconsistently throughout and still do. And you

(36:52):
know, to develop those relationships withinand beyond the family is what really is
making the difference. It comes backto relationship, doesn't it. It comes
back to that long term bond orgetting to know each other and accepting each
other and having the recognition. Youknow, it's so hard to keep on

(37:14):
keeping on if nobody says thank youyou. And so one of the ways
that we're able to value our studentswhen they're in high school is to award
community service hours. So they completea log seat about you know, how
much time they spend and what theydo, and then we equate that to

(37:35):
their level of responsibility and prograte communityservice hours according to that. We work
that out with the school districts.So now we have that on our website
at AACY dot org under the CaregivingYouth Institute, and students from anywhere can
complete that form and we will sendthem an award certificate and sometimes even talk

(37:59):
to their school if if the school, you know, isn't familiar with this,
which is most of the time ofthe cases. And so the pointing
to recognize if there is, forexample, a graduation requirement of community service,
to recognize family caregiving towards that andto just say thank you from from

(38:22):
a person to another. Yeah.Yeah, because I mean they're volunteering at
home. You know, in somecountries kids get paid, not so in
our country at least at this timefor the work they do. So at
least we can pay them in communityservice hours. Yeah. That makes a

(38:43):
lot of sense and something that's relativelyyou know, easier to implement, right,
It doesn't take a whole lot tomake some kind of written appreciation or
written record that way. That thatmakes a lot of sense as a as
a good step. That's very doablefor people across the country. And you

(39:07):
know, even Lisa, if theschool doesn't require it, um kids can
put that on their resume or theircollege application or their trade school application.
You know, this is nothing tobe ashamed of. It should be valued
and recognized and supported. Yeah.Absolutely, And I would think that it
makes a valuable statement about who theyare and what their capabilities are on a

(39:32):
college application or resume. I wouldlike to think. So yeah, yeah,
soum So that's wonderful thing that you'rehelping with and is there I will
I will put a link on mywebsite for people to come check it out,

(39:54):
perhaps apply for that thank you orhelping getting recognized. Absolutely, yeah,
And is there any or else youwould like to direct people to come
check out? Well, I thinkour website is good and we're in the

(40:14):
process of developing it all the time. They can sign up for one of
our newsletters and keep intens that way. We're also if their caregiving youth,
we'll have a periodically opportunity for kidsacross the country could talk with each other.
Yeah, I know later this month. Don one of our partners is

(40:35):
Lorenzo's House and they work specifically withchildren who care for a family member with
young unset Alzheimer's disease, and sothey're having a youth summit on June twenty
first. So you know, thosekinds of things are on our website.
You know that different groups, sosome to these specific groups will offer different

(41:01):
things. I think we're the onlyone that offers support through and activities throughout
the calendar year, because you know, caregiving does an end when school and
sometimes it increases. No, andI mean from a student perspective, they

(41:23):
have their break from school, sothey're not trying to navigate both at the
same time. But caregiving definitely doesn'tstop, that's for sure, right,
and sometimes school is a restipit.Yeah right, right, Okay, is

(41:43):
there anything else that you would liketo make sure we add or bring into
the conversation. No, if anybody'sinterested in policy, you know, and
they would like to get in touchwith us. The GIO, the Government
Accounting Office, is working on anext survey, so we'll have some new
data in the future. But also, you know, just the importance of

(42:07):
policy recognition so that you don't haveto be eighteen to be considered a family
caregiver. That makes so much sense, and again, seems like a relatively
easy thing to do to include youthin the programs and services that already exist.
Well it seems easy, you know, but politically it's not. Politically

(42:31):
it's tough. And besides that,the original documents that were signed by President
Clinton in two thousand for the NationalFamily Caregiver Support Program, we're attached to
the Older Americans Act, so thereare age discriminators and so effectively, caregiving
youth suffer from reverse age discrimination.Yeah, yeah, and that's gonna bay.

(42:57):
It doesn't have to be that way. So joined with us to help
make change. Thank you and thankyou for providing ways for people to do
that. And it was really nicetalking to you YouTube Lisa. Thank you
Take care. I'm Lisa Judy andthis has loved usn't pay the bills making
family caregiving visible. If you've enjoyedthe show, please tell a friend.

(43:21):
Then you and your friend can bothfollow the show on Facebook or Twitter and
participating conversations about caregiving. Thanks forlistening.