November 15, 2021 • 26 mins
Today we are talking about something that’s hard for a lot of people: Thinking about the future. We don’t know what to expect – and frankly, the unknown can be a little scary – especially if you are a person with a disability or a family member who relies on supports to build and live a good life.
In this episode we meet Liz Mahar who is sharing a wake up call across the country about future planning. She says it's not only possible but – it is necessary.
Liz is the Director of Family and Sibling Initiatives at The Arc of the United States and she is a leader within the Center for Future Planning. However, her greatest experience might come as sister to Crystal, who has Down syndrome.
Learn more about future planning:
https://arcwi.org/2017/10/05/part-wisconsin-future-planning-network/
The Center for Future Planning: https://futureplanning.thearc.org/?_ga=2.182646630.1397700017.1636577291-193680245.1590781332
Letter of Intent: https://arcwi.org/content/uploads/sites/17/2017/12/FINAL-CFP-LOI-on-cfp-website.pdf
Wisconsin Professionals to Help: https://futureplanning.thearc.org/professionals?utf8=%E2%9C%93&profession=&state=Wisconsin
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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 (00:22):
Hello and welcome to the arc experience podcast.
I'm your host, Lisa pew from thearc Wisconsin.
Today.
We're talking about somethingthat's hard for a lot of people
thinking about the future.
We don't know what to expect,and frankly, it can be a little
scary, especially if you're aperson with a disability or a
(00:42):
family member who relies onsupports to build and live a
good life.
But today's guest Liz Muhar issharing a wake up call across
the country about futureplanning.
She says that not only is futureplanning possible, but it is
essential.
Liz is the director of familyand sibling initiatives at the
(01:04):
arc of the United States.
And she is a leader within thecenter for future planning.
However, her greatestexperience, I think she'd say
might come as sister to crystalwho has down syndrome.
Isn't that right, Liz?
Speaker 3 (01:17):
Yes.
That's correct.
Speaker 2 (01:19):
Well, thanks for joining us, Liz.
We want to dive right in.
Can you tell us what is futureplanning?
Give us kind of the one-on-one.
Speaker 3 (01:28):
Sure.
Lisa, thank you so much forhaving me today.
I'm happy to be here.
Um, so future planning isbasically creating a guide for
an individual with thedisability so they can lead a
happy and independent life.
Um, that's no different than youand I making a plan for our
future.
Um, but it's, uh, it's veryimportant for people with
(01:48):
disabilities because they havesomeone, a family member or a
trusted friends that supportsthem in their day-to-day life.
Um, it's important that thisguide, this a life plan, um,
documents, the person's dailyroutines, um, their health
background, educationbackgrounds, um, things that are
(02:10):
important to them, holidaytraditions.
Um, and so caregivers andindividuals that support the
person with the disability, um,on a regular basis, we as
caregivers have this informationin our heads, but if it's not
documented, then when thecaregiver can't provide that
level of support, then theperson who takes over and, and
(02:30):
as, and when I say take over,takes over with supporting the
individual, um, that informationkind of gets lost in the, in the
translation.
So, um, it's so essential for, Ithink, for anyone to have that
plan, but, um, for people withdisabilities, um, it's critical
that everything is documented.
Speaker 2 (02:50):
Sure.
That that makes a lot of sense.
And, you know, as I mentioned inyour introduction, you're a
family member and you have yoursister crystal.
I'm wondering if you could tellus a little bit about what
future planning looks like inyour family's life and why it's
kind of personally important toyou.
Speaker 3 (03:09):
So when I was growing up, um, my parents would always
tell me that, you know, Liz,you're going to help take care
of crystal when you're botholder, when you're adults.
And I said, you know,absolutely.
Um, my father passed away 16years ago and I was very, um,
helpful to my mom and my sister.
(03:30):
And I sort of helped them withthe transition.
And I asked my mom, oh, wealways talked about, you know,
me helping crystal.
Um, and at that point, crystalwas in transition.
Um, she had a year left ofschool and she wasn't receiving
services and supports, um,besides what she was receiving
at public school.
And I said, okay, so what arethe details to that plan?
(03:52):
And my mom said, oh, you'regoing to help take care of her.
And I said, oh, okay.
And then I quickly, you know,looked through the will and look
that she was disinheritedbecause that's information that
the attorney had given themthat's information, that's very
old school.
Um, and so then I quicklystarted to learn that there were
no details to the Liz will takecare of crystal plan.
(04:13):
Um, so I think it's so essentialfor families across the country,
siblings like myself, um, tohelp guide those conversations
and to make sure that, um,everyone is going to have
different viewpoints.
Um, and I know certainly in myfamily, we all have, we have
some different viewpoints, butat the end of the day, um, it's
(04:35):
important that crystal wishesand desires and needs are being
met, um, and that she it'sultimately her life and her
plan.
Um, so, uh, you know, it's soimportant for these
conversations to start soonerrather than later, um, because
it, it brings a lot of peace ofmind also for caregivers.
(04:57):
Um, I know, um, there's a lot ofbarriers to future planning and
like missing a block ofinformation misinformation also.
So lack of information, there'snot a lot of availability of
appropriate services.
I know we've been trying tofigure out once my mom can't
help my sister, my sister,crystal lives at home with my
(05:17):
mom when crystal, it gets to thepoint where my mom can help
support her.
Is she gonna live in her own inthe current apartment that they
live in?
Um, she's going to live at agroup home.
Like, what is that gonna looklike?
Um, so we've done some grouphome tours and we haven't really
quite found a setting that wouldbe appropriate for her and that
(05:41):
she would be happy with andcomfortable with.
Um, so that's something thatwe're still struggling through
and there's other pieces likethe independent living skills,
um, that I think my mom likes todo a lot of stuff at home for
crystal.
Um, so, um, it's hard for me tocommunicate to her that it's
(06:02):
important that she lets crystaldo more at home.
Um, but crystal is prettyindependent.
She attends a day program andworks part-time at a senior
center.
Um, so I think for my mom, oneof the barriers has been the
emotional side of things andthat that's a large barrier in
itself.
Um, so, you know, I think it'sjust on my end trying to do as
(06:25):
much as I can as the sibling wholives across country.
My sister's in California,living at home with my mom where
I grew up and I'm out here inVirginia, right outside of DC.
So there's only so much I cancontrol.
Um, and so it's great that Ihave a lot of resources and I
can start, you know, puttingtogether a plan as much as I
(06:49):
know through the work that I do.
Um, so when that day comes,crystal has everything that she
needs.
Speaker 2 (06:58):
You know, what I really like most about your
story is that even though youare so far away, like literally
across the country, you couldalmost not be further in living
in this country.
You are still probably more sothan most siblings kind of
shoulder to shoulder with yourmom in at least thinking about
the plan and helping crystal toget some experiences that are
(07:20):
going to move her closer to whather future can look like after
mom is no longer there, becausethat's the reality, right?
I know some statistics inWisconsin about 75% of adults
with intellectual anddevelopmental disabilities live
at home with their parents.
Um, but that about a quarter ofthose parents right now are
(07:42):
already over age 60.
So that that's a lot of familiesthat probably really should be
doing some of the explorationthat you're doing right now with
your mom.
And with crystal, you mentioneda little bit about some of the,
you know, emotional sort ofreservations that your own mom
(08:02):
has, but in your years of doingtraining around future planning,
what are other roadblocks, why,why are families not really
getting future planning done?
Would you say?
Speaker 3 (08:15):
I think, um, families sometimes have a, uh, they have
a experience with the systemthat was not such a great one.
Um, or there's a lack ofservices, home and community
based services.
As we know the services andsupports for individuals with
disabilities are not mandatory.
They're optional.
So meaning that, um, if you livein a state where, um, there are
(08:38):
a few services, then you'regoing to be put on a waiting
list.
Um, and, um, institutional careI think is what's mandatory, but
home and community-basedservices, isn't, it's an old
model and that's why we'readvocating.
And so that's why I think nowthat I've been very involved
with my sister and now workingat the arc, I, as a family
(09:00):
member, see the connection.
And I think it's important forfamily members to see the
connection between what we'redoing day to day to help plan
for the future.
But if those services andsupports aren't available in the
community, we have to advocatefor them.
Um, so, you know, with myexperience, um, aside from the
emotional, there's the, youknow, the, the what's available
(09:22):
in each state also, um, and thiscomes as a surprise to a lot of
caregivers that live in otherstates from their loved one with
a disability, but let's saycrystal, you know, my mom passes
away and crystal decides to livecloser to me and my husband here
in Virginia, her the dayprogram, the respite care, the
(09:43):
job coach, those services thatshe gets to make her successful
on a day-to-day basis at whatshe does at work.
And through her day program,those services don't follow her
here in Virginia, she would haveto be added onto a waiting list
to get those services.
So those services aren'tportable.
They don't follow her.
(10:03):
So that's, I think, um, whenworking with caregivers, when
I've done presentations or asiblings, that's a kind of a aha
moment.
And I actually didn't know thatuntil I came to the arc.
Um, so it doesn't matter whatyour education level is.
You can be a college graduateand still not know, um, because
every state service system hasevery state has a different
(10:26):
service system.
Um, so it's important that westart to, um, as caregivers
figure out what's available, andif there's going to be a move in
the future, that's what theindividual wants.
What can get done ahead of timeto sort of plan for that
transition to another state.
Speaker 2 (10:47):
Yeah, that service system is so complicated.
Think about all the alphabetsoup of acronyms and programming
that parents get to knowthroughout a lifetime of their
loved ones with disabilities.
I EEP ISP, DVR, whatever, andsorry for the background noise
(11:08):
here.
I've got a lot of hammeringhappening if you're hearing
that, but I, but like to yourpoint of bringing in siblings
and other people that can be inthat circle of support earlier
is not only going to just helpthem know what their role is in
the plan, but help to ease theminto that really complicated
system to figure out how to keepthings going.
(11:29):
Hey, Liz, well, greatconversation so much more to
talk about.
We're going to take a littlebreak to hear from our sponsor
and we'll be right back
Speaker 1 (11:38):
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 (11:53):
All right, thanks Liz, for hanging in there, we
want to keep our conversationgoing.
I wanted to ask you, you know,talked a little bit about the
roadblocks.
Are there also some of thebiggest mistakes that families
maybe make?
How can we talk to people abouthow to avoid those sorts of
mistakes?
Speaker 3 (12:13):
I think there's a lot of, um, advice that's given out
that's very old school.
Um, when I say that I mentionedthe example of my, um, parents,
when they created their will,they disinherited my sister.
Um, and that was the advice thatwas given to them from their
attorney there and their estateplanners.
So, um, it's trying, you know,getting this information from,
(12:38):
you know, the arc or anotherdisability organization, the arc
, um, our center for futureplanning.
We have an online resourcecenter with, uh, sort of what's
included in a future plan.
Um, our Reese, our onlineresources is, is future planning
dot the arc.org.
Um, and so I, you know, I thinkit's just important for, um,
(12:59):
caregivers to make sure thatwhen they are making decisions,
um, but they are making thatdecision based on information
that's sort of up to date.
And also, um, I also can thinkof guardianship when I mentioned
this, because another sort of, Iwould think outdated, um,
(13:21):
thinking is that every personwith a disability needs a
guardian, um, the guardianshipis, is very restrictive.
It looks different every state,um, but you're essentially
taking away the rights of anindividual to make a decision.
And there's other ways forcaregivers, um, to support an
individual with a disabilitythat doesn't require
(13:43):
guardianship and, you know, andto be in full transparency here,
I am a limited guardian of mysister.
Um, but you know, it's a way forus to help her make decisions.
Um, but you know, when she movesto Virginia, she might not want
that because the guardianshiplooks different in Virginia.
(14:04):
Um, so, you know, what are ourother ways for us to support
her?
We can get a power of attorney.
We can, um, be an authorizedrepresentative for her social
security or any type of publicbenefits that she's receiving.
I know when I go to the doctoroffices on in California, um,
they don't even ask for theguardianship papers anymore.
(14:25):
They just ask for her to sign aform that says that it's okay
for me to receive information.
So I know, um, and that might bedifferent every state, but, um,
it's important to just kind ofget that information ahead of
time, because I think whenpeople, when individuals with
disabilities, um, start to reachthe age 18, a lot of families
(14:48):
here to the state guardianshipguardianship, um, or just
outdated information.
So just make sure you're as acaregiver, informing yourself
through organizations in yourcommunity, um, such as the arc,
um, that can provide you withinformation.
So you can make an informeddecision.
Speaker 2 (15:08):
You know, I think in addition to what you just talked
about related to guardianshipand, um, you know, kind of
outdated, uh, assumptions.
One of my takeaways just in ourconversation here is like, don't
forget to include the siblingsthat you're the circle of
support for your loved one, witha disability should include
those siblings or other familymembers who really need to be
(15:30):
brought into the plan early.
Otherwise it seems like it'skind of a missed opportunity.
Would you agree
Speaker 3 (15:38):
Completely?
Um, and you know, there are somesimple, I mean, I'm very
involved with my sisters.
Um, just life day to day, wetext twice a day and, you know,
I'm part of her, her, uh, ISPmeetings, annual meetings with
the case manager and her jobcoach knows me well, not every
is going to play that role andthat's okay, but I think it's
(15:59):
better to know that ahead oftime, rather than make the
assumption also, um, theindividual with the disability
may or may not feel comfortablewith their sibling playing that
role in my case, you know, mysister and I are very close, so
I help support her.
But, um, it's important for, Ithink parents not to make that
(16:20):
assumption because the siblingmay or may not be able or
willing to, um, you know,provide that level of support.
Um, now we're in the future.
Speaker 2 (16:31):
Yeah.
That is a, that is a really goodpoint.
A good thing to talk about now,for sure.
You know, this, I can, I'veworked with you on future
planning trainings, and I knowhow passionate you are about
this.
What, what is your goal?
What drives your passion?
Why do you want more people toknow about future planning?
Speaker 3 (16:52):
Because I think going back to what you were saying
about the alphabet soup, um, andasking me about the, the
roadblocks.
So my mom is from Guatemala and,um, English, isn't her first
language.
So I think there are a lot offamilies like myself and also
families like, like yours, Lisa,where, um, you know, we're just,
(17:13):
day-to-day trying to support ourloved one.
And we want to make sure thatthey have what they need, not
just in the now, but in thefuture.
And so what drives my passion isthat all families have access to
up-to-date information, and itdoesn't matter what zip code you
live in, what language youspeak, that you're getting the
(17:33):
information and breaking throughsort of the alphabet soup of the
disability services system.
Um, and also that, um, as afamily member that you feel
heard and that, you know, thatthere are other people in your
same boat, I know you and I havetalked in the past about sort of
our personal experiences, you asa parent and myself as a
(17:56):
sibling.
Um, so what drives my passion isI want to make sure that no
matter what zip code state youlive in, that you have access to
the information to make thoseinformed decisions.
Um, but also that then thatdrives individuals to advocate
for those services and supports.
(18:16):
There's been so much progress inthe disability rights movement
in the last 70 years, but we'veonly scratched the surface.
Um, and so there's still a lotof models out there that are
very outdated and that don'tempower people with disabilities
or don't recognize thecontributions that people with
disabilities make.
Um, so, you know, at the end ofthe day, it's, it's my
(18:38):
experience and sibling and mysister that drives my passion.
Speaker 2 (18:42):
Yeah.
That makes total sense.
Um, let's say there's somebodywho's listening to us right now.
That is like, gee, I know Ishould be doing this.
I feel so overwhelmed.
I don't know where to start.
Is there some simple, easy,first step?
Like what would you say?
Like what, what's, what's onething that they can do that,
(19:02):
that, that can start a futureplanning process for someone.
Speaker 3 (19:08):
So, you know, feeling overwhelmed, I can completely
relate to that feeling.
I would say, you know, startwith the, like the pain points.
So when I say that, it's like, Ithink about, uh, my first sort
of step into future planningwith my sister.
And that was 16 years ago whenmy dad passed away and I figured
out there's no details to thisplan.
(19:30):
So at that point, crystal wastransitioning out of school and
we didn't know what was next forher.
Was she going to work?
Was she going to like, what iscrystal going to do?
So I was, we were able toconnect her to the regional
center, which is the servicesystem in California.
She got a case manager and wefigured out, okay, there's a day
program.
This is what's available.
(19:51):
So for me, and for crystal, thefirst step was okay, figure out
what she needs to do to getconnected to the service system
in California and what sheneeds, what do we need to do to
get her to, you know, contributeto the community and to live a
full and independent life nowthat she was, you know,
(20:13):
graduating out of school andtransitioning out of school.
So when I say, you know, respondto the pain point, it's like,
what's the sort of like hotbutton issue right now that your
loved one needs.
Um, so that could be, you know,someone received a large sum of
money.
What do you do with that?
Um, there's able accounts,special needs trusts, um, or,
(20:36):
you know, your loved one isturning 18 and people keep
saying guardianshipguardianship, start to read
about that.
So just like take a little biteout of the meal, start with a
snack and then work your way up.
Um, so it, it's not going to allget answered or done in one
session or even in one year it'sa lifelong process.
(20:59):
Um, but definitely address sortof like the hot button, what
needs to get done right now, andthen, you know, sort of work
your way through there.
Speaker 2 (21:08):
I like that start with a snack.
That's really great advicebecause I think you're right.
If you try to eat that wholemeal, it's just going to make it
even more overwhelming.
And there isn't there, there'sno reason why you can't start
with a small step, you know, andkind of speaking of that small
step, I know that the arc of theUnited States and the center for
future planning have built a lotof really great resources and
(21:30):
tools that can help someone diveinto that small step.
Can you talk a little bit aboutwhere people can get more
information or maybe tools thatcan help them?
Speaker 3 (21:41):
So we have an online resource center, it's future
planning dot the arc.org, andthat's, um, really great first
step to figuring out what needsto be included in a plan.
So we have, um, just generalinformation about what to
include in the plan who's gonna,who, you know, who's, who plays
a role in the future planningprocess.
(22:04):
Um, we have webinars videos,plain language documents.
We have a lot of our resourcestranslated to Spanish.
Um, and I'm actually very happythat, um, our webpage that we
have in Spanish started tobecome, uh, there was just a lot
of resources and we actually hadto redesign it.
So it's kind of a good problemto have because we started to
(22:27):
develop more Spanish resourcesover the years.
Um, so that Spanish webpage isgoing to look, um, very similar
to sort of, um, some of ourother pages that we have on the
website.
We also have a tool called thebuilder plan tool where people
can go in to our, um, futureplanning website and create an
(22:50):
account for free and start tobuild a plan.
Um, uh, each section will takeabout an hour to go through, but
it's like, uh, uh, you answerquestions and then the system
then, um, suggests a next stepor what information you're
missing to get to the next step.
And it creates this to-do listfor you.
And you can share parts of theplan with individuals, um, who
(23:14):
are part of the future planningteam, because that's what it is.
You're all part of the team.
Um, so definitely in all of ourresources are free.
We have archive webinars.
Um, so definitely encouragepeople to take a look of our, at
our online resource center,future planning about the
art.org and just start to lookaround and, you know, you may
(23:35):
not be comfortable with creatingyour plan online, but we have a
great resource, a template, um,the letter of intent, which is
the plan, um, and people candownload that and start to fill
out, uh, the plan and just do ahandwritten plan rather than the
online.
Speaker 2 (23:53):
Yeah, there, I, I totally support people going to
that website, uh, center forfuture planning, for resources
and the build, your plan tool.
I think what you were talkingabout before was starting with
that small step.
Really, you can find a resourceon any one of those, probably
small steps to kind of get youstarted.
(24:14):
I also think the letter ofintent is a great kind of a
simpler step to kind of use asyour roadmap.
One other thing that you didn'ttalk about that I think is
really important is that theperson with the disability, you
talked about crystal being thecenter of that plan and kind of
the driver of the plan.
And there are also resources onthere for self-advocates and
(24:37):
videos to write Liz.
Speaker 3 (24:41):
Yes, that's correct.
We have a tools and resourcesfor self-advocates.
The people with disabilitiesabsolutely are the center of the
plan, they're the drivers.
Um, and it's important that theyare well aware of the
information so they can makethat informed decision.
Speaker 2 (24:59):
Thank you so much for joining us, Liz, what's your
last word of advice for peoplewho have been listening to us
today,
Speaker 3 (25:06):
Don't be overwhelmed, um, and you know, really reach
out to other people.
Um, because I know that's,what's helped me is not just
being informed, but, um, I havefriends, uh, colleagues who are
parents or siblings, uh, and it,you know, just knowing that
there's, there are other peoplethat are going through the
(25:28):
process really helps, and alsonot just emotionally, but, um,
also helps with helping with ourown future planning process.
Um, and it's okay to take abreak, you know, self care, um,
setting boundaries too.
Um, we want to make sure that wecan step away from the plan from
(25:49):
the process if it's gettingoverwhelming.
So that way we can come back andhave fresh eyes, um, when we're
making the plan.
Speaker 2 (25:59):
Really great words of advice.
Thank you so much for theconversation today.
All the ideas about resources,I'll be putting those in the
show notes for people, and thankyou to our listeners for
listening to the arc experiencepodcast today, please be sure to
like share and subscribe andwe'll talk to you next time.
Speaker 1 (26:19):
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]
(26:41):
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 (00:22):
Hello and welcome to the arc experience podcast.
I'm your host, Lisa pew from thearc Wisconsin.
Today.
We're talking about somethingthat's hard for a lot of people
thinking about the future.
We don't know what to expect,and frankly, it can be a little
scary, especially if you're aperson with a disability or a
(00:42):
family member who relies onsupports to build and live a
good life.
But today's guest Liz Muhar issharing a wake up call across
the country about futureplanning.
She says that not only is futureplanning possible, but it is
essential.
Liz is the director of familyand sibling initiatives at the
(01:04):
arc of the United States.
And she is a leader within thecenter for future planning.
However, her greatestexperience, I think she'd say
might come as sister to crystalwho has down syndrome.
Isn't that right, Liz?
Speaker 3 (01:17):
Yes.
That's correct.
Speaker 2 (01:19):
Well, thanks for joining us, Liz.
We want to dive right in.
Can you tell us what is futureplanning?
Give us kind of the one-on-one.
Speaker 3 (01:28):
Sure.
Lisa, thank you so much forhaving me today.
I'm happy to be here.
Um, so future planning isbasically creating a guide for
an individual with thedisability so they can lead a
happy and independent life.
Um, that's no different than youand I making a plan for our
future.
Um, but it's, uh, it's veryimportant for people with
(01:48):
disabilities because they havesomeone, a family member or a
trusted friends that supportsthem in their day-to-day life.
Um, it's important that thisguide, this a life plan, um,
documents, the person's dailyroutines, um, their health
background, educationbackgrounds, um, things that are
(02:10):
important to them, holidaytraditions.
Um, and so caregivers andindividuals that support the
person with the disability, um,on a regular basis, we as
caregivers have this informationin our heads, but if it's not
documented, then when thecaregiver can't provide that
level of support, then theperson who takes over and, and
(02:30):
as, and when I say take over,takes over with supporting the
individual, um, that informationkind of gets lost in the, in the
translation.
So, um, it's so essential for, Ithink, for anyone to have that
plan, but, um, for people withdisabilities, um, it's critical
that everything is documented.
Speaker 2 (02:50):
Sure.
That that makes a lot of sense.
And, you know, as I mentioned inyour introduction, you're a
family member and you have yoursister crystal.
I'm wondering if you could tellus a little bit about what
future planning looks like inyour family's life and why it's
kind of personally important toyou.
Speaker 3 (03:09):
So when I was growing up, um, my parents would always
tell me that, you know, Liz,you're going to help take care
of crystal when you're botholder, when you're adults.
And I said, you know,absolutely.
Um, my father passed away 16years ago and I was very, um,
helpful to my mom and my sister.
(03:30):
And I sort of helped them withthe transition.
And I asked my mom, oh, wealways talked about, you know,
me helping crystal.
Um, and at that point, crystalwas in transition.
Um, she had a year left ofschool and she wasn't receiving
services and supports, um,besides what she was receiving
at public school.
And I said, okay, so what arethe details to that plan?
(03:52):
And my mom said, oh, you'regoing to help take care of her.
And I said, oh, okay.
And then I quickly, you know,looked through the will and look
that she was disinheritedbecause that's information that
the attorney had given themthat's information, that's very
old school.
Um, and so then I quicklystarted to learn that there were
no details to the Liz will takecare of crystal plan.
(04:13):
Um, so I think it's so essentialfor families across the country,
siblings like myself, um, tohelp guide those conversations
and to make sure that, um,everyone is going to have
different viewpoints.
Um, and I know certainly in myfamily, we all have, we have
some different viewpoints, butat the end of the day, um, it's
(04:35):
important that crystal wishesand desires and needs are being
met, um, and that she it'sultimately her life and her
plan.
Um, so, uh, you know, it's soimportant for these
conversations to start soonerrather than later, um, because
it, it brings a lot of peace ofmind also for caregivers.
(04:57):
Um, I know, um, there's a lot ofbarriers to future planning and
like missing a block ofinformation misinformation also.
So lack of information, there'snot a lot of availability of
appropriate services.
I know we've been trying tofigure out once my mom can't
help my sister, my sister,crystal lives at home with my
(05:17):
mom when crystal, it gets to thepoint where my mom can help
support her.
Is she gonna live in her own inthe current apartment that they
live in?
Um, she's going to live at agroup home.
Like, what is that gonna looklike?
Um, so we've done some grouphome tours and we haven't really
quite found a setting that wouldbe appropriate for her and that
(05:41):
she would be happy with andcomfortable with.
Um, so that's something thatwe're still struggling through
and there's other pieces likethe independent living skills,
um, that I think my mom likes todo a lot of stuff at home for
crystal.
Um, so, um, it's hard for me tocommunicate to her that it's
(06:02):
important that she lets crystaldo more at home.
Um, but crystal is prettyindependent.
She attends a day program andworks part-time at a senior
center.
Um, so I think for my mom, oneof the barriers has been the
emotional side of things andthat that's a large barrier in
itself.
Um, so, you know, I think it'sjust on my end trying to do as
(06:25):
much as I can as the sibling wholives across country.
My sister's in California,living at home with my mom where
I grew up and I'm out here inVirginia, right outside of DC.
So there's only so much I cancontrol.
Um, and so it's great that Ihave a lot of resources and I
can start, you know, puttingtogether a plan as much as I
(06:49):
know through the work that I do.
Um, so when that day comes,crystal has everything that she
needs.
Speaker 2 (06:58):
You know, what I really like most about your
story is that even though youare so far away, like literally
across the country, you couldalmost not be further in living
in this country.
You are still probably more sothan most siblings kind of
shoulder to shoulder with yourmom in at least thinking about
the plan and helping crystal toget some experiences that are
(07:20):
going to move her closer to whather future can look like after
mom is no longer there, becausethat's the reality, right?
I know some statistics inWisconsin about 75% of adults
with intellectual anddevelopmental disabilities live
at home with their parents.
Um, but that about a quarter ofthose parents right now are
(07:42):
already over age 60.
So that that's a lot of familiesthat probably really should be
doing some of the explorationthat you're doing right now with
your mom.
And with crystal, you mentioneda little bit about some of the,
you know, emotional sort ofreservations that your own mom
(08:02):
has, but in your years of doingtraining around future planning,
what are other roadblocks, why,why are families not really
getting future planning done?
Would you say?
Speaker 3 (08:15):
I think, um, families sometimes have a, uh, they have
a experience with the systemthat was not such a great one.
Um, or there's a lack ofservices, home and community
based services.
As we know the services andsupports for individuals with
disabilities are not mandatory.
They're optional.
So meaning that, um, if you livein a state where, um, there are
(08:38):
a few services, then you'regoing to be put on a waiting
list.
Um, and, um, institutional careI think is what's mandatory, but
home and community-basedservices, isn't, it's an old
model and that's why we'readvocating.
And so that's why I think nowthat I've been very involved
with my sister and now workingat the arc, I, as a family
(09:00):
member, see the connection.
And I think it's important forfamily members to see the
connection between what we'redoing day to day to help plan
for the future.
But if those services andsupports aren't available in the
community, we have to advocatefor them.
Um, so, you know, with myexperience, um, aside from the
emotional, there's the, youknow, the, the what's available
(09:22):
in each state also, um, and thiscomes as a surprise to a lot of
caregivers that live in otherstates from their loved one with
a disability, but let's saycrystal, you know, my mom passes
away and crystal decides to livecloser to me and my husband here
in Virginia, her the dayprogram, the respite care, the
(09:43):
job coach, those services thatshe gets to make her successful
on a day-to-day basis at whatshe does at work.
And through her day program,those services don't follow her
here in Virginia, she would haveto be added onto a waiting list
to get those services.
So those services aren'tportable.
They don't follow her.
(10:03):
So that's, I think, um, whenworking with caregivers, when
I've done presentations or asiblings, that's a kind of a aha
moment.
And I actually didn't know thatuntil I came to the arc.
Um, so it doesn't matter whatyour education level is.
You can be a college graduateand still not know, um, because
every state service system hasevery state has a different
(10:26):
service system.
Um, so it's important that westart to, um, as caregivers
figure out what's available, andif there's going to be a move in
the future, that's what theindividual wants.
What can get done ahead of timeto sort of plan for that
transition to another state.
Speaker 2 (10:47):
Yeah, that service system is so complicated.
Think about all the alphabetsoup of acronyms and programming
that parents get to knowthroughout a lifetime of their
loved ones with disabilities.
I EEP ISP, DVR, whatever, andsorry for the background noise
(11:08):
here.
I've got a lot of hammeringhappening if you're hearing
that, but I, but like to yourpoint of bringing in siblings
and other people that can be inthat circle of support earlier
is not only going to just helpthem know what their role is in
the plan, but help to ease theminto that really complicated
system to figure out how to keepthings going.
(11:29):
Hey, Liz, well, greatconversation so much more to
talk about.
We're going to take a littlebreak to hear from our sponsor
and we'll be right back
Speaker 1 (11:38):
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 (11:53):
All right, thanks Liz, for hanging in there, we
want to keep our conversationgoing.
I wanted to ask you, you know,talked a little bit about the
roadblocks.
Are there also some of thebiggest mistakes that families
maybe make?
How can we talk to people abouthow to avoid those sorts of
mistakes?
Speaker 3 (12:13):
I think there's a lot of, um, advice that's given out
that's very old school.
Um, when I say that I mentionedthe example of my, um, parents,
when they created their will,they disinherited my sister.
Um, and that was the advice thatwas given to them from their
attorney there and their estateplanners.
So, um, it's trying, you know,getting this information from,
(12:38):
you know, the arc or anotherdisability organization, the arc
, um, our center for futureplanning.
We have an online resourcecenter with, uh, sort of what's
included in a future plan.
Um, our Reese, our onlineresources is, is future planning
dot the arc.org.
Um, and so I, you know, I thinkit's just important for, um,
(12:59):
caregivers to make sure thatwhen they are making decisions,
um, but they are making thatdecision based on information
that's sort of up to date.
And also, um, I also can thinkof guardianship when I mentioned
this, because another sort of, Iwould think outdated, um,
(13:21):
thinking is that every personwith a disability needs a
guardian, um, the guardianshipis, is very restrictive.
It looks different every state,um, but you're essentially
taking away the rights of anindividual to make a decision.
And there's other ways forcaregivers, um, to support an
individual with a disabilitythat doesn't require
(13:43):
guardianship and, you know, andto be in full transparency here,
I am a limited guardian of mysister.
Um, but you know, it's a way forus to help her make decisions.
Um, but you know, when she movesto Virginia, she might not want
that because the guardianshiplooks different in Virginia.
(14:04):
Um, so, you know, what are ourother ways for us to support
her?
We can get a power of attorney.
We can, um, be an authorizedrepresentative for her social
security or any type of publicbenefits that she's receiving.
I know when I go to the doctoroffices on in California, um,
they don't even ask for theguardianship papers anymore.
(14:25):
They just ask for her to sign aform that says that it's okay
for me to receive information.
So I know, um, and that might bedifferent every state, but, um,
it's important to just kind ofget that information ahead of
time, because I think whenpeople, when individuals with
disabilities, um, start to reachthe age 18, a lot of families
(14:48):
here to the state guardianshipguardianship, um, or just
outdated information.
So just make sure you're as acaregiver, informing yourself
through organizations in yourcommunity, um, such as the arc,
um, that can provide you withinformation.
So you can make an informeddecision.
Speaker 2 (15:08):
You know, I think in addition to what you just talked
about related to guardianshipand, um, you know, kind of
outdated, uh, assumptions.
One of my takeaways just in ourconversation here is like, don't
forget to include the siblingsthat you're the circle of
support for your loved one, witha disability should include
those siblings or other familymembers who really need to be
(15:30):
brought into the plan early.
Otherwise it seems like it'skind of a missed opportunity.
Would you agree
Speaker 3 (15:38):
Completely?
Um, and you know, there are somesimple, I mean, I'm very
involved with my sisters.
Um, just life day to day, wetext twice a day and, you know,
I'm part of her, her, uh, ISPmeetings, annual meetings with
the case manager and her jobcoach knows me well, not every
is going to play that role andthat's okay, but I think it's
(15:59):
better to know that ahead oftime, rather than make the
assumption also, um, theindividual with the disability
may or may not feel comfortablewith their sibling playing that
role in my case, you know, mysister and I are very close, so
I help support her.
But, um, it's important for, Ithink parents not to make that
(16:20):
assumption because the siblingmay or may not be able or
willing to, um, you know,provide that level of support.
Um, now we're in the future.
Speaker 2 (16:31):
Yeah.
That is a, that is a really goodpoint.
A good thing to talk about now,for sure.
You know, this, I can, I'veworked with you on future
planning trainings, and I knowhow passionate you are about
this.
What, what is your goal?
What drives your passion?
Why do you want more people toknow about future planning?
Speaker 3 (16:52):
Because I think going back to what you were saying
about the alphabet soup, um, andasking me about the, the
roadblocks.
So my mom is from Guatemala and,um, English, isn't her first
language.
So I think there are a lot offamilies like myself and also
families like, like yours, Lisa,where, um, you know, we're just,
(17:13):
day-to-day trying to support ourloved one.
And we want to make sure thatthey have what they need, not
just in the now, but in thefuture.
And so what drives my passion isthat all families have access to
up-to-date information, and itdoesn't matter what zip code you
live in, what language youspeak, that you're getting the
(17:33):
information and breaking throughsort of the alphabet soup of the
disability services system.
Um, and also that, um, as afamily member that you feel
heard and that, you know, thatthere are other people in your
same boat, I know you and I havetalked in the past about sort of
our personal experiences, you asa parent and myself as a
(17:56):
sibling.
Um, so what drives my passion isI want to make sure that no
matter what zip code state youlive in, that you have access to
the information to make thoseinformed decisions.
Um, but also that then thatdrives individuals to advocate
for those services and supports.
(18:16):
There's been so much progress inthe disability rights movement
in the last 70 years, but we'veonly scratched the surface.
Um, and so there's still a lotof models out there that are
very outdated and that don'tempower people with disabilities
or don't recognize thecontributions that people with
disabilities make.
Um, so, you know, at the end ofthe day, it's, it's my
(18:38):
experience and sibling and mysister that drives my passion.
Speaker 2 (18:42):
Yeah.
That makes total sense.
Um, let's say there's somebodywho's listening to us right now.
That is like, gee, I know Ishould be doing this.
I feel so overwhelmed.
I don't know where to start.
Is there some simple, easy,first step?
Like what would you say?
Like what, what's, what's onething that they can do that,
(19:02):
that, that can start a futureplanning process for someone.
Speaker 3 (19:08):
So, you know, feeling overwhelmed, I can completely
relate to that feeling.
I would say, you know, startwith the, like the pain points.
So when I say that, it's like, Ithink about, uh, my first sort
of step into future planningwith my sister.
And that was 16 years ago whenmy dad passed away and I figured
out there's no details to thisplan.
(19:30):
So at that point, crystal wastransitioning out of school and
we didn't know what was next forher.
Was she going to work?
Was she going to like, what iscrystal going to do?
So I was, we were able toconnect her to the regional
center, which is the servicesystem in California.
She got a case manager and wefigured out, okay, there's a day
program.
This is what's available.
(19:51):
So for me, and for crystal, thefirst step was okay, figure out
what she needs to do to getconnected to the service system
in California and what sheneeds, what do we need to do to
get her to, you know, contributeto the community and to live a
full and independent life nowthat she was, you know,
(20:13):
graduating out of school andtransitioning out of school.
So when I say, you know, respondto the pain point, it's like,
what's the sort of like hotbutton issue right now that your
loved one needs.
Um, so that could be, you know,someone received a large sum of
money.
What do you do with that?
Um, there's able accounts,special needs trusts, um, or,
(20:36):
you know, your loved one isturning 18 and people keep
saying guardianshipguardianship, start to read
about that.
So just like take a little biteout of the meal, start with a
snack and then work your way up.
Um, so it, it's not going to allget answered or done in one
session or even in one year it'sa lifelong process.
(20:59):
Um, but definitely address sortof like the hot button, what
needs to get done right now, andthen, you know, sort of work
your way through there.
Speaker 2 (21:08):
I like that start with a snack.
That's really great advicebecause I think you're right.
If you try to eat that wholemeal, it's just going to make it
even more overwhelming.
And there isn't there, there'sno reason why you can't start
with a small step, you know, andkind of speaking of that small
step, I know that the arc of theUnited States and the center for
future planning have built a lotof really great resources and
(21:30):
tools that can help someone diveinto that small step.
Can you talk a little bit aboutwhere people can get more
information or maybe tools thatcan help them?
Speaker 3 (21:41):
So we have an online resource center, it's future
planning dot the arc.org, andthat's, um, really great first
step to figuring out what needsto be included in a plan.
So we have, um, just generalinformation about what to
include in the plan who's gonna,who, you know, who's, who plays
a role in the future planningprocess.
(22:04):
Um, we have webinars videos,plain language documents.
We have a lot of our resourcestranslated to Spanish.
Um, and I'm actually very happythat, um, our webpage that we
have in Spanish started tobecome, uh, there was just a lot
of resources and we actually hadto redesign it.
So it's kind of a good problemto have because we started to
(22:27):
develop more Spanish resourcesover the years.
Um, so that Spanish webpage isgoing to look, um, very similar
to sort of, um, some of ourother pages that we have on the
website.
We also have a tool called thebuilder plan tool where people
can go in to our, um, futureplanning website and create an
(22:50):
account for free and start tobuild a plan.
Um, uh, each section will takeabout an hour to go through, but
it's like, uh, uh, you answerquestions and then the system
then, um, suggests a next stepor what information you're
missing to get to the next step.
And it creates this to-do listfor you.
And you can share parts of theplan with individuals, um, who
(23:14):
are part of the future planningteam, because that's what it is.
You're all part of the team.
Um, so definitely in all of ourresources are free.
We have archive webinars.
Um, so definitely encouragepeople to take a look of our, at
our online resource center,future planning about the
art.org and just start to lookaround and, you know, you may
(23:35):
not be comfortable with creatingyour plan online, but we have a
great resource, a template, um,the letter of intent, which is
the plan, um, and people candownload that and start to fill
out, uh, the plan and just do ahandwritten plan rather than the
online.
Speaker 2 (23:53):
Yeah, there, I, I totally support people going to
that website, uh, center forfuture planning, for resources
and the build, your plan tool.
I think what you were talkingabout before was starting with
that small step.
Really, you can find a resourceon any one of those, probably
small steps to kind of get youstarted.
(24:14):
I also think the letter ofintent is a great kind of a
simpler step to kind of use asyour roadmap.
One other thing that you didn'ttalk about that I think is
really important is that theperson with the disability, you
talked about crystal being thecenter of that plan and kind of
the driver of the plan.
And there are also resources onthere for self-advocates and
(24:37):
videos to write Liz.
Speaker 3 (24:41):
Yes, that's correct.
We have a tools and resourcesfor self-advocates.
The people with disabilitiesabsolutely are the center of the
plan, they're the drivers.
Um, and it's important that theyare well aware of the
information so they can makethat informed decision.
Speaker 2 (24:59):
Thank you so much for joining us, Liz, what's your
last word of advice for peoplewho have been listening to us
today,
Speaker 3 (25:06):
Don't be overwhelmed, um, and you know, really reach
out to other people.
Um, because I know that's,what's helped me is not just
being informed, but, um, I havefriends, uh, colleagues who are
parents or siblings, uh, and it,you know, just knowing that
there's, there are other peoplethat are going through the
(25:28):
process really helps, and alsonot just emotionally, but, um,
also helps with helping with ourown future planning process.
Um, and it's okay to take abreak, you know, self care, um,
setting boundaries too.
Um, we want to make sure that wecan step away from the plan from
(25:49):
the process if it's gettingoverwhelming.
So that way we can come back andhave fresh eyes, um, when we're
making the plan.
Speaker 2 (25:59):
Really great words of advice.
Thank you so much for theconversation today.
All the ideas about resources,I'll be putting those in the
show notes for people, and thankyou to our listeners for
listening to the arc experiencepodcast today, please be sure to
like share and subscribe andwe'll talk to you next time.
Speaker 1 (26:19):
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]
(26:41):
and cannot be copied ordistributed without permission.
It was produced by EleanorCheetham, a composer and artist
with autism.
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