January 20, 2023 • 30 mins
Today we are talking about changing mindsets and allowing everyone the opportunity to succeed or fail. Guardianship refers to the legal role given to an individual to manage the personal activities or resources of another person who "cannot do so on their own." What happens when we shift the conversation from complete control over someone's life to supported decision-making?
Guests:
- Sarah Carmany, Self-Advocate of Michigan, SABE Board Member, Youth Ambassador Program Trainer
- Mike Thornton, Self-Advocate & Youth Ambassador Program Trainer
- Tom Masseau, Executive Director of Disability Rights Arkansas
Helpful Links:
- Guardianship: Rights, Remedies, and Responsibilities Webinar
- Guardianship Resource Booklet
- Youth Ambassador Website
- Connect with an Advocacy Group - The Arkansas Alliance for Disability Advocacy
Contact DRA
- Subscribe to our newsletter
- Stay connected
- Show your support
- Email us at info@disabilityrightsar.org
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Lani Jennings-Hall (00:00):
At disability rights, Arkansas, we
are focused on guidance forpeople with disabilities on how
to navigate your rights, thingsthat help with your everyday
life, and how to navigate thecomplex systems of how to get
the support you need. In thispodcast, we bring that
information directly to you thelistener on things like
accessibility questions, careerand care, and even the nuances
(00:22):
of love life with a disability.
Today we are talking aboutchanging mindsets and allowing
everyone the opportunity tosucceed, or even fail. I'm your
host Lani Jennings-Hall. In thisepisode, I'm joined by
powerhouse self advocates, SarahCaramany and Mike Thornton, as
well as Executive Director ofDisability Rights Arkansas, Tom
(00:44):
Masseau. Sarah Carmany is a selfadvocate of Michigan, a SABE
board member, and a YouthAmbassador, program trainer.
Mike Thornton is a self advocateand Youth Ambassador Program
trainer. Tom we're gonna kick itoff today with you talking about
the big picture. So what isguardianship?
Tom Masseau (01:03):
Yeah, thanks Lani.
So guardianship means obtainingthe legal authority to make
decisions for another person. Soessentially, it's a legal
process that's used when aperson can no longer make or
communicate safe or sounddecisions. And it's done through
the court process. Your familymember, your friend, or whomever
it may be, will petition thecourt to take all of your rights
(01:24):
away, because they fear that youcannot make the decisions for
yourself. And then the courtwill make that determination and
then you're, then that personwill become your guardian. And
it impacts an individual'srights to essentially live their
life. You know, it takes awaytheir right to decide where to
(01:46):
live, to have you know whetheror not they can obtain a
driver's license, to have theirown money to choose their
friends, their religion, whetheror not they want to work, and
especially here in Arkansas, ittakes away your right to vote.
So when when when somebodyattains guardianship over
(02:06):
another individual, their rightto independence is essentially
lost. So it is a huge barrierfor for people who want to live
their life and make their owndecisions for themselves. There
are multiple alternatives thatindividuals can look at with
regards to guardianship. Soguardianship is not the be all
(02:27):
end all there are alternativessuch as a durable power of
attorney, a psychiatric advanceddirective. And a psychiatric
Advanced Directive allows you toappoint someone to communicate
your treatment decisions. Ifyou're unable to make those
decisions. There's alsorepresentative payees, someone
to assist you in managing yourfinances. And the one that we
(02:48):
want to talk about today issupported decision making, where
support decision making is anagreement that you bring people
into to help you make thosedecisions. You know, you weigh
your pros and cons. And you youas the individual ultimately
make those decisions. And youhave a circle of supporters
around you that if thosedecisions that you make, do not
(03:09):
pan out, you have a fallbackthat they can assist you in
looking at other otherdecisions.
Lani Jennings-Hall (03:18):
So what I'm hearing, I mean, these are a lot
of rights that are essentiallyremoved from an individual, what
does, how do those conversationsget started with the individual
to to just say, you know, hey,we're How does, how does this
start of we're going to put youunder this guardianship, we're
going to put an individual undera guardianship, how does how
(03:38):
does that all begin?
Tom Masseau (03:40):
so what we're seeing here is that when an
individual is going through theschool system, so essentially,
you know, when someone turns 18,we're seeing that a lot of
parents and educators arelooking at educators are
actually encouraging parents togo to court to obtain that
guardianship for fear of losingcontrol or losing a way to
(04:01):
communicate with their lovedone. So the individual or the
family member will go to courtthinking they're doing the right
thing, because they want to stayinvolved in their and their
loved ones life. But essentiallywhat they're doing is they're
stripping that individual, alltheir independence in their
rights. And, and not allowingthat individual to make those
choices that, you know, you andI and everybody else can make
(04:25):
those decisions. And if we makethe wrong decision, it's all
part of life is is what we do.
So you're actually taking thatright away for somebody to fail
and make the wrong decision andlearn from it. To move on.
Lani Jennings-Hall (04:37):
That that fear of failure that everyone
has has the right to do. It'sjust that's crazy to me. Sarah,
I want to throw it to you. Iknow you have some unique
experience here.
Sarah C. (04:50):
well I just had a thought to hear when he said
that. It's like thenon-disabled. There's like two
sets of rules the non Disabledcan make mistakes and everybody
doesn't get on them. But when aperson with a disability makes a
mistake, it's like a lifesentence, not a life lesson.
Lani Jennings-Hall (05:13):
Yeah. I think that's a great point. I
mean, why does it have been ifthere has to be a line drawn in
the sand you know, you know, theyou cannot have that that right
to failure or to succeed,frankly, I mean, it does. I
don't understand why there hasto be a line. And along this
vein, Sarah, can you tell us alittle bit about your story? I
(05:34):
know you are, you do have analternative to guardianship. Can
you talk a little bit about yourjourney?
Sarah C. (05:42):
Yes, my name is Sarah Carmany. I am from Kalamazoo,
Michigan. And I, I have I my ownguardian, I live on my own in my
own two bedroom apartment. And Ido have a rep payee. That helps
(06:03):
me manage my money, andbasically thankful that I have
her. Because she does help mebudget out what how much I'm
going to spend on food and howmuch I'm going to spend for
other things, too. And basicallyhelps me and then I also, she
(06:26):
also helps me make sure my billsget paid, too.
Tom Masseau (06:30):
So Lani, if I can jump in and answer a question.
So Sarah, you're very humble.
And you're a very strongadvocate in Michigan. And one of
the things that as a member ofthe Self Advocates Becoming
Empowered or SABE board, youshare your experience of growing
up with your with your family,and and what you did and what
your what your parents taughtyou with, like IEPs and
different things. Can you talk alittle bit about that? And how
(06:53):
you gained your in how thatindependence came about?
Sarah C. (06:57):
Yeah, well, I know when I was in elementary and
intermediate, my mom and dadwould go to my IEP, but we
always, even mom and dad and allof us would always even us kid
would go with mom and dad tomeetings, like if there was
parent teacher conferences. Wewere always there with mom and
(07:21):
dad. And then and we always wentto our IEP together and up until
I got into junior high. And thenthat's when mom said, Okay, I'm
not going to another IEP becausemom felt like the teachers were
analyzing her and she didn'tlike that. So she said she
(07:45):
wasn't going to another IEPagain. But mom and dad were
always invited and my dadworked.
Lani Jennings-Hall (07:53):
Talk about the significance of going to
this IEP meeting. Because Imean, that is a daunting
experience in itself. I amobviously not as well versed on,
I am just beginning to reallylearn. I mean, how big a piece
these IEP meetings are. I meanthere's a lot of players at the
table of IEP meetings. I mean,do y'all want to talk a little
bit? I mean, you two are gonnaknow so much more about it than
(08:15):
I am talk just, I mean, justjust all the players at a table
in the significance of being atthe table?
Sarah C. (08:23):
Well, I think also my parents didn't understand really
what an IEP meeting was. All weknew is, it was just a meeting
that we had that the school sayswe have to have yearly, I didn't
really know it was wild, oranything. I don't think my
parents even understood that.
And but it is a meeting. It's anindividualized plan, education
(08:46):
plan, planning meeting. I thinkthat's what IEP stands for. And
basically, it's where peoplewith special ed, there's
teachers and the parents and anyother staff up was that's
involved in the kids is life orthe child's life, come together
(09:07):
along with the child, and theymake plans for how they're going
to complete the school year.
Tom Masseau (09:17):
So Sarah can, so when your parents stopped
attending the IEP meetings, didyou continue by yourself? And
how did that and how did thatmake you feel? Because you
essentially were your ownadvocate. And so, how in front
of that point, what did you howdid that make you feel?
Sarah C. (09:33):
Um, I kind of didn't really understand the meetings
well, but I did the best I couldwith what I could do. And so
basically, there were somedecisions that are made that I
may not have liked, but I guessit's to help me get through the
(09:55):
school year.
Lani Jennings-Hall (09:56):
Hey Sarah, is that really when those
conversations started about selfadvocacy and self awareness and
those alternatives toguardianship? Is that really
when that that journey and thoseconversations started?
Sarah C. (10:11):
Well, my mom growing up, my mom always taught me and
my brother to make our owndecisions for ourselves. Like,
she would ask me what she wouldlet us make decisions as to what
we wanted to wear, she wouldalso name the choices of what we
may have wanted to eat forbreakfast. And, and you know,
(10:35):
things like that. And that addedup to also as we got older, we
started doing some chores. Likewhen I was when I was eight or
nine, I started wiping a TVscreen off. And then as I got
older, I did the dishes. Shestarted letting me do dishes at
(10:56):
a young age. And then when wegot into our teens that went
like 12 show, that was how old Iwas, when I first started trying
to cook. She let me try to cookfor myself, I had a hard time
with the stove, because it wasone where you had to turn the
gas on the light the match. Thatwas scary. i For the longest
(11:20):
time. I had a hard time doingthat. But then one day, I got
the courage to do it. And momand dad and my brother, all told
me, how am I going to eat when Iget older? Because I was so
scared of the stove?
Lani Jennings-Hall (11:38):
Well, it sounds like you made it work.
Sarah C. (11:41):
Yeah, it did.
Tom Masseau (11:45):
So well. So when you started cooking, and when
you when you're when your momstarted giving you out and your
mom and dad started giving youall these things? How did that
make you feel? And how did youwhen you were 20? as you got
older? How did you maintain? Orhow did you direct your make
your own decisions? And becauseyou were pretty much independent
at that point, right? Right.
Yeah.
Sarah C. (12:06):
And then Mom would let us also help us with chores to
like, when I was about 12 yearsold, I remember going into
laundry mats with my mom and meand my brother both did and we
were so excited. We mom sat downand we did the laundry. And I
guess that just led into moredecision making. I was taught at
(12:31):
a young age to to make thisdecision. And even when I did
make mistakes, mom would alwaysencourage me and if my dad
started yelling at me, he said,No, don't don't deter me from
stopping because I've got tolearn. That's what mom would
say.
Tom Masseau (12:52):
And say, I think that's an important point. You
know, when we're talking aboutguardianship, and you know,
everybody makes mistakes as anindividual. And I think you said
it, you know, you have a saying.
What is it life's mistakes? Whatwas it?
Sarah C. (13:06):
life? I gotta think of it too. life. Life mistakes
shouldn't be a a deterrent. Itshould be a life lesson, not a
life sentence.
Tom Masseau (13:22):
Yes, yes. And I think that's important, because
everybody makes mistakes. Andeverybody has learned from
those. And so, you know, as youwere growing up, it worked. And
so what are you how are youliving your best life now
without a guardian? What do you,what are you doing right now?
Sarah C. (13:37):
I actually working.
I'm working on trying to, tomaintain jobs, skills for
different jobs. And I also wantto learn how to drive. And I do,
I don't have a guardian becausemy parents are deceased. But I
(13:58):
have what they call a circle ofsupport, which is people in my
life. People from like the ARCand the agencies to help me out
and my payee and my caseworkerand whatnot. We come together to
meet and once a month, and wehave a circle meeting where we
(14:25):
discuss goals and we try to workand trying to achieve them.
Lani Jennings-Hall (14:35):
And Sarah, you and Mike are both part of
the Youth Ambassador Program,correct? Mike, do you want to
tell a little bit about what thegoal of this program is and what
you guys do there?
Mike T. (14:48):
Well, the goal of the Youth Ambassador Program is the
project is to teach supporteddecision making and other
alternatives to guardianship. WeAnd to the youth from several
states, our first group ofstates was this, Wisconsin,
Vermont in Georgia. And they areabout to truly wrap up their
(15:13):
project. We've had two months ofpresentations from Georgia and
Vermont, and coming into Januaryin the state of Wisconsin will,
or the youth from Wisconsin willpresent on projects that they
worked on, to talk aboutsupported decision making an
alternatives that they'velearned about and want to be
(15:35):
more involved in. Our secondgroup of states started several
months ago, and they're into themonthly check ins in Oregon, New
Jersey, South Carolina, Indianaand Michigan. And they are just
now beginning on a 12 monthcycle of presentation or learn
(15:56):
of learning more, and about whatthey've learned throughout the
12 weeks. We we were doing it 16For the first group and we cut
it down to 12. They they'relearning more and then after 12
months, they will startpresenting on their process. And
we will have a presentations byeach of those states. That's
(16:22):
what they learned about thedifferences in between supported
decision making and guardianshipand other alternatives like Tom
mentioned earlier, Rep Paee, andseveral others. My mom, my mind
is slipping me right now. So
Lani Jennings-Hall (16:39):
Well, I think that is a really good
point that you made thatguardianship is different, and
in different sites and everystate is working towards towards
different goals. How are theother states working to change
the mindset from guardianship tothese other alternatives? I know
this is the goal of thisprogram, how are these other
states working working to changethis mindset?
Mike T. (17:01):
Well, some of them already have alternatives to it,
and some are working to talk totheir states in to talk about
putting supportive decision inplace, or alternatives that are
, don't put someone under totalguardians, and this if they
(17:23):
don't, sometimes it's like allor nothing. And if they don't
have their alternatives, it'simportant to for people to be
able to make choices, because weall learn from from making
choices. And that's what they'reworking on. The youth have
worked on presenting projectsand that can present to others
(17:48):
and their state's done one ofone of them have done a book
talking about their life andwhat sources they made. Some of
them have done videos. Youthfrom Georgia, Derek, he's done.
He does drawings, like meaningfacilitation drawings that talk
(18:11):
about what's going on. So he canuse those drawings to talk about
what guardianship is, whatsupported decision making is and
things so that he was gotten tomeet him a few weeks ago in at a
conference and he spoke aboutand sat him in and other youth
(18:33):
onboard that talked about howthey're using things to also
help in making a business of it.
So that's a little bit of howthey're using their projects.
And thanks for reaching out totheir states.
Tom Masseau (18:50):
Yeah, sorry, like, so one of the things that I find
interesting is that, you know,all of these other states is,
and Sarah you being up inMichigan and Mike, you being a
Trainer for Youth across thecountry and trying to get
alternatives of guardianship toallow people to maintain their
rights without and have themmake their own decisions. Yet
(19:11):
here in Arkansas, you know, wehave nothing but guardianship. I
mean, as soon as somebody getsto the age of graduation, they
you know, automatically, youknow, chances are you're going
to become under guardianship.
So, sir, I find your experience,you know, growing up and your
parents allowing you to attendyour own IEP meetings and making
those decisions and learningfrom those mistakes. Very
(19:33):
helpful, that we can, you know,talk about here in Arkansas,
because that's far and fewbetween for a lot of self
advocates, so I'm wondering whatwhat are you what have what is
what is self advocates ofMichigan doing to look at
alternatives to guardianship andwhat are you doing, you know,
with advocating and legislationand just talking about
(19:56):
alternatives to guardianship inMichigan. So Oh, I guess my
question is, what advice do youhave for self advocates in
Arkansas? To advocate foralternatives to guardianship?
Sarah C. (20:13):
Um, that's a good question. Um, well, I guess I
can say is tried to join anadvocacy group and work on the
guardianship issue. Work ontrying to change people's
(20:36):
mindset from wanting to just putpeople with a guardian. And, and
try to say, hey, there's otheralternatives, besides just
putting people with a guardian.
I think and we're, we probablyhave a lot of work to still do,
because I think the idea hasbeen around a while, but it's
(20:59):
just trying to get people tochange their mindset. And
basically, that's not alwayseasy. And sometimes it takes a
lot of advocating to do that,and years of advocating to do
that.
Tom Masseau (21:18):
Right. Yeah.
Mike T. (21:20):
Can I add something there? There's a lot of
misunderstanding to on whatsupported decision making is and
is not. So I think a lot of thathas to do with education on what
supported decision making is.
Lani Jennings-Hall (21:35):
Yeah, I think you're right, Michael. And
I think, Mike, question for you.
What advice do you have, I knowyou're, you're a strong
self-advocate here in Arkansas,you know, what advice do you
have for self advocateadvocates? Or even you know,
families going through thisprocess? Or are you know, maybe
you're wanting to talk to somelegislators? What advice do you
have?
Mike T. (21:57):
Well, my advice would be first off to research, the
difference between guardianshipand alternatives to
guardianship, supported makingor whatever, Rep Payee, so that
you can understand what it doesand what it does not do. Also,
(22:19):
it allows your your child tospeak and, and learn from them
what what they would like,because there they are the
biggest person that should bethe most important person in the
room. And as Sarah has done, ifyou want to be in the room for
an IEP, that's great. But takeyour child in the room with you
(22:43):
so that they are the center ofthe room. And they're able to
communicate, let themcommunicate their needs and
wants. Because that's somethingI never I had speech therapy as
a child and everything. But Idon't remember ever, ever
needing an IEP. But if I wouldhave needed one, it would have
(23:06):
been very important from nowthat I'm an adult to know that I
sort of had a voice in it. I dothink that there needs to be
more communication betweenpeople with disabilities as to
here in Arkansas as to what'simportant on self advocacy, and
(23:29):
supportive decision and makingchoices and being able to learn
from one another because we needto support one another period.
That's one thing that supporteddecision making is sometimes we
support one another,
Lani Jennings-Hall (23:43):
you know, Disability Rights Arkansas, this
is definitely one of our ourpoints that we are hoping to
work on with legislation thisyear, what can we do? What is
Disability Rights working on?
Tom Masseau (23:57):
You know, I'm going to kind of blend what Sarah's
advice and Mike's advicetogether is. I think we in here
in Arkansas need to need tochange the culture. And we need
to shift the conversation fromone have complete control over
somebody's life, to one thatallows an individual to make
(24:17):
decisions. And I really likeSarah's a quote and we might use
this going forward that mistakesare a life lesson, not a life
sentence. And I think that'simportant as we go forward and
to change the mindset of thosepeople who think that just
because an individual with adisability, that if you have a
disability, you can't make anydecisions whatsoever, that I
(24:39):
need to have complete controlover you. And I think that's,
you know, not the right attitudeor right things that we need to
be talking about. And soDisability Rights Arkansas,
we're going to be pushing foralternatives to guardianship,
one that outputs the individualin control of their life with
those circle of supportersaround them. You know, similar
to what Sarah was talking about.
You know, and she has a circleof friends and supporters around
(25:02):
her where she meets monthly. Ithink that's something that we
need to be talking about here inArkansas, and getting rid of
those myths that people thinkthat if we open up and provide
alternatives to guardianship foreverybody, everybody in you
know, is going to revolt, andthere's going to be chaos in the
in the state of Arkansas. That'snot true. I think we need to,
(25:22):
you know, if I had my way, Iwould just say, let's just do
away with it. And a lot ofpeople make decisions, you know,
that's what they do. Andespecially, I think, with
regards to voting, you know,here and here in Arkansas, you
know, I mentioned that if youhave a guardian, you cannot
vote?
Sarah C. (25:39):
Well, I just think that there's, and I know, this
may never happen, but I think itshould be allowed where, wards
are allowed to learn autonomy,and prove to a judge, or a
lawyer, that they can keep theirautonomy for a time, and then
(25:59):
decide based on that, whetherthey should need guardianship or
not. Because each individualdoes have different needs.
Tom Masseau (26:08):
You're absolutely right, Sarah, and I think, you
know, everybody is, everybody isan individual, and everybody has
their own needs. And, you know,everybody should be able to
explain, you know, what theywant in life and how they're
going to get there. But I justwant to go back to the voting
piece. And because it's, it'scritical, and that it is a
constitutional right for peopleto have it to be able to vote,
(26:28):
and to suggest that just becausesomebody has a disability, they
they don't know who they'revoting for, they can't make
those decisions. You know, Ilook back, and we have many
college students and grownups,you know, across this country,
that have no idea what'shappening in the political
realm, or what issues arehappening. But yeah, they're
able to vote. And I can assureyou and all of the self
(26:51):
advocates and peopledisabilities that I've spoken
to, they are fully educated onwhat's happening, because the
issues that are being discussedhere in Little Rock, whether
it's in Lansing, whether it'sin, you know, in Washington,
wherever it may be, they have adirect impact on their lives. So
they're going to be activelyinvolved in these conversations,
whereas college students andadults whomever, yeah, I like
(27:14):
this person, I like that person.
So I think, you know, we need togo back and have that
conversation of, you know,mistakes are life lessons, not a
life sentence. So so I'm goingto be borrowing that for quite
some time. So thank you, Sarah.
Lani Jennings-Hall (27:26):
He'll end up putting it on his board. But
does anyone have any, any lastminute comments you want to add?
Mike T. (27:33):
My comment would be when it comes to people with
disabilities, listen to theperson and let let their voice
be heard. And by you. That's toooften people with disabilities
are not valued in Arkansas oranywhere. Because they think,
(27:56):
because someone has adisability, they do not
understand. Even those were justphysical disabilities. Some
people do not value them becausethey think just because they
don't know what they're doing.
Sarah C. (28:14):
And also, another thing too, is, we're have to
also try to undo the myths aboutalternatives to guardianship
because there are myths toalternatives to guardianship.
Like, if I, you can correct meif I'm wrong, Tom. Doesn't isn't
(28:35):
there are people that think ifyou do alternatives to
guardianship, that there wouldbe like, chaos, or that, that
there will be no order? Yeah,
Tom Masseau (28:46):
yeah. You know, some of the arguments, this is a
great point, Sarah, because someof the arguments, or some of the
myths that were happening herein Arkansas, when we were
talking about alternatives toguardianship was that for
individuals living ininstitutions, that if we, if we
had enough, if we were to be ifwe pass, alternatives to
guardianship, or supportivedecision making, that all of
(29:06):
those individuals in there wouldrevolt. And and and say, This is
not where I want to be, I wantto move into the community, as
if that's a bad thing. But they,you know, that was the myth
behind it, that we can't allowthat to happen. So that was just
one and I'm sure there's manyothers across the state here in
(29:26):
Arkansas, and across the countryabout, you know, allowing people
to make decisions on their own.
Sarah C. (29:32):
So it seems like every time we turn around, we're
always trying to undo the myths.
Mike T. (29:38):
Yeah, it's all about the fears. Right?
Tom Masseau (29:41):
The fears of the unknown. Yes.
Lani Jennings-Hall (29:44):
Thank you for joining me today. And thank
you for listening to our veryfirst episode of Including You.
If you need more information onguardianship, you can check out
our previous webinar titledGuardianship: Rights, Remedies
and Responsibilities on ourYouTube channel. You can also
find the link to this in ourshow notes. At DRA, We envision
an Arkansas where people withdisabilities are equal members
(30:07):
and their communities and candictate their lives through self
determination. If you'reinterested in more information,
make sure to subscribe to thispodcast and visit our website.
At disability rights, Arkansas, we
are focused on guidance forpeople with disabilities on how
to navigate your rights, thingsthat help with your everyday
life, and how to navigate thecomplex systems of how to get
the support you need. In thispodcast, we bring that
information directly to you thelistener on things like
accessibility questions, careerand care, and even the nuances
(00:22):
of love life with a disability.
Today we are talking aboutchanging mindsets and allowing
everyone the opportunity tosucceed, or even fail. I'm your
host Lani Jennings-Hall. In thisepisode, I'm joined by
powerhouse self advocates, SarahCaramany and Mike Thornton, as
well as Executive Director ofDisability Rights Arkansas, Tom
(00:44):
Masseau. Sarah Carmany is a selfadvocate of Michigan, a SABE
board member, and a YouthAmbassador, program trainer.
Mike Thornton is a self advocateand Youth Ambassador Program
trainer. Tom we're gonna kick itoff today with you talking about
the big picture. So what isguardianship?
Tom Masseau (01:03):
Yeah, thanks Lani.
So guardianship means obtainingthe legal authority to make
decisions for another person. Soessentially, it's a legal
process that's used when aperson can no longer make or
communicate safe or sounddecisions. And it's done through
the court process. Your familymember, your friend, or whomever
it may be, will petition thecourt to take all of your rights
(01:24):
away, because they fear that youcannot make the decisions for
yourself. And then the courtwill make that determination and
then you're, then that personwill become your guardian. And
it impacts an individual'srights to essentially live their
life. You know, it takes awaytheir right to decide where to
(01:46):
live, to have you know whetheror not they can obtain a
driver's license, to have theirown money to choose their
friends, their religion, whetheror not they want to work, and
especially here in Arkansas, ittakes away your right to vote.
So when when when somebodyattains guardianship over
(02:06):
another individual, their rightto independence is essentially
lost. So it is a huge barrierfor for people who want to live
their life and make their owndecisions for themselves. There
are multiple alternatives thatindividuals can look at with
regards to guardianship. Soguardianship is not the be all
(02:27):
end all there are alternativessuch as a durable power of
attorney, a psychiatric advanceddirective. And a psychiatric
Advanced Directive allows you toappoint someone to communicate
your treatment decisions. Ifyou're unable to make those
decisions. There's alsorepresentative payees, someone
to assist you in managing yourfinances. And the one that we
(02:48):
want to talk about today issupported decision making, where
support decision making is anagreement that you bring people
into to help you make thosedecisions. You know, you weigh
your pros and cons. And you youas the individual ultimately
make those decisions. And youhave a circle of supporters
around you that if thosedecisions that you make, do not
(03:09):
pan out, you have a fallbackthat they can assist you in
looking at other otherdecisions.
Lani Jennings-Hall (03:18):
So what I'm hearing, I mean, these are a lot
of rights that are essentiallyremoved from an individual, what
does, how do those conversationsget started with the individual
to to just say, you know, hey,we're How does, how does this
start of we're going to put youunder this guardianship, we're
going to put an individual undera guardianship, how does how
(03:38):
does that all begin?
Tom Masseau (03:40):
so what we're seeing here is that when an
individual is going through theschool system, so essentially,
you know, when someone turns 18,we're seeing that a lot of
parents and educators arelooking at educators are
actually encouraging parents togo to court to obtain that
guardianship for fear of losingcontrol or losing a way to
(04:01):
communicate with their lovedone. So the individual or the
family member will go to courtthinking they're doing the right
thing, because they want to stayinvolved in their and their
loved ones life. But essentiallywhat they're doing is they're
stripping that individual, alltheir independence in their
rights. And, and not allowingthat individual to make those
choices that, you know, you andI and everybody else can make
(04:25):
those decisions. And if we makethe wrong decision, it's all
part of life is is what we do.
So you're actually taking thatright away for somebody to fail
and make the wrong decision andlearn from it. To move on.
Lani Jennings-Hall (04:37):
That that fear of failure that everyone
has has the right to do. It'sjust that's crazy to me. Sarah,
I want to throw it to you. Iknow you have some unique
experience here.
Sarah C. (04:50):
well I just had a thought to hear when he said
that. It's like thenon-disabled. There's like two
sets of rules the non Disabledcan make mistakes and everybody
doesn't get on them. But when aperson with a disability makes a
mistake, it's like a lifesentence, not a life lesson.
Lani Jennings-Hall (05:13):
Yeah. I think that's a great point. I
mean, why does it have been ifthere has to be a line drawn in
the sand you know, you know, theyou cannot have that that right
to failure or to succeed,frankly, I mean, it does. I
don't understand why there hasto be a line. And along this
vein, Sarah, can you tell us alittle bit about your story? I
(05:34):
know you are, you do have analternative to guardianship. Can
you talk a little bit about yourjourney?
Sarah C. (05:42):
Yes, my name is Sarah Carmany. I am from Kalamazoo,
Michigan. And I, I have I my ownguardian, I live on my own in my
own two bedroom apartment. And Ido have a rep payee. That helps
(06:03):
me manage my money, andbasically thankful that I have
her. Because she does help mebudget out what how much I'm
going to spend on food and howmuch I'm going to spend for
other things, too. And basicallyhelps me and then I also, she
(06:26):
also helps me make sure my billsget paid, too.
Tom Masseau (06:30):
So Lani, if I can jump in and answer a question.
So Sarah, you're very humble.
And you're a very strongadvocate in Michigan. And one of
the things that as a member ofthe Self Advocates Becoming
Empowered or SABE board, youshare your experience of growing
up with your with your family,and and what you did and what
your what your parents taughtyou with, like IEPs and
different things. Can you talk alittle bit about that? And how
(06:53):
you gained your in how thatindependence came about?
Sarah C. (06:57):
Yeah, well, I know when I was in elementary and
intermediate, my mom and dadwould go to my IEP, but we
always, even mom and dad and allof us would always even us kid
would go with mom and dad tomeetings, like if there was
parent teacher conferences. Wewere always there with mom and
(07:21):
dad. And then and we always wentto our IEP together and up until
I got into junior high. And thenthat's when mom said, Okay, I'm
not going to another IEP becausemom felt like the teachers were
analyzing her and she didn'tlike that. So she said she
(07:45):
wasn't going to another IEPagain. But mom and dad were
always invited and my dadworked.
Lani Jennings-Hall (07:53):
Talk about the significance of going to
this IEP meeting. Because Imean, that is a daunting
experience in itself. I amobviously not as well versed on,
I am just beginning to reallylearn. I mean, how big a piece
these IEP meetings are. I meanthere's a lot of players at the
table of IEP meetings. I mean,do y'all want to talk a little
bit? I mean, you two are gonnaknow so much more about it than
(08:15):
I am talk just, I mean, justjust all the players at a table
in the significance of being atthe table?
Sarah C. (08:23):
Well, I think also my parents didn't understand really
what an IEP meeting was. All weknew is, it was just a meeting
that we had that the school sayswe have to have yearly, I didn't
really know it was wild, oranything. I don't think my
parents even understood that.
And but it is a meeting. It's anindividualized plan, education
(08:46):
plan, planning meeting. I thinkthat's what IEP stands for. And
basically, it's where peoplewith special ed, there's
teachers and the parents and anyother staff up was that's
involved in the kids is life orthe child's life, come together
(09:07):
along with the child, and theymake plans for how they're going
to complete the school year.
Tom Masseau (09:17):
So Sarah can, so when your parents stopped
attending the IEP meetings, didyou continue by yourself? And
how did that and how did thatmake you feel? Because you
essentially were your ownadvocate. And so, how in front
of that point, what did you howdid that make you feel?
Sarah C. (09:33):
Um, I kind of didn't really understand the meetings
well, but I did the best I couldwith what I could do. And so
basically, there were somedecisions that are made that I
may not have liked, but I guessit's to help me get through the
(09:55):
school year.
Lani Jennings-Hall (09:56):
Hey Sarah, is that really when those
conversations started about selfadvocacy and self awareness and
those alternatives toguardianship? Is that really
when that that journey and thoseconversations started?
Sarah C. (10:11):
Well, my mom growing up, my mom always taught me and
my brother to make our owndecisions for ourselves. Like,
she would ask me what she wouldlet us make decisions as to what
we wanted to wear, she wouldalso name the choices of what we
may have wanted to eat forbreakfast. And, and you know,
(10:35):
things like that. And that addedup to also as we got older, we
started doing some chores. Likewhen I was when I was eight or
nine, I started wiping a TVscreen off. And then as I got
older, I did the dishes. Shestarted letting me do dishes at
(10:56):
a young age. And then when wegot into our teens that went
like 12 show, that was how old Iwas, when I first started trying
to cook. She let me try to cookfor myself, I had a hard time
with the stove, because it wasone where you had to turn the
gas on the light the match. Thatwas scary. i For the longest
(11:20):
time. I had a hard time doingthat. But then one day, I got
the courage to do it. And momand dad and my brother, all told
me, how am I going to eat when Iget older? Because I was so
scared of the stove?
Lani Jennings-Hall (11:38):
Well, it sounds like you made it work.
Sarah C. (11:41):
Yeah, it did.
Tom Masseau (11:45):
So well. So when you started cooking, and when
you when you're when your momstarted giving you out and your
mom and dad started giving youall these things? How did that
make you feel? And how did youwhen you were 20? as you got
older? How did you maintain? Orhow did you direct your make
your own decisions? And becauseyou were pretty much independent
at that point, right? Right.
Yeah.
Sarah C. (12:06):
And then Mom would let us also help us with chores to
like, when I was about 12 yearsold, I remember going into
laundry mats with my mom and meand my brother both did and we
were so excited. We mom sat downand we did the laundry. And I
guess that just led into moredecision making. I was taught at
(12:31):
a young age to to make thisdecision. And even when I did
make mistakes, mom would alwaysencourage me and if my dad
started yelling at me, he said,No, don't don't deter me from
stopping because I've got tolearn. That's what mom would
say.
Tom Masseau (12:52):
And say, I think that's an important point. You
know, when we're talking aboutguardianship, and you know,
everybody makes mistakes as anindividual. And I think you said
it, you know, you have a saying.
What is it life's mistakes? Whatwas it?
Sarah C. (13:06):
life? I gotta think of it too. life. Life mistakes
shouldn't be a a deterrent. Itshould be a life lesson, not a
life sentence.
Tom Masseau (13:22):
Yes, yes. And I think that's important, because
everybody makes mistakes. Andeverybody has learned from
those. And so, you know, as youwere growing up, it worked. And
so what are you how are youliving your best life now
without a guardian? What do you,what are you doing right now?
Sarah C. (13:37):
I actually working.
I'm working on trying to, tomaintain jobs, skills for
different jobs. And I also wantto learn how to drive. And I do,
I don't have a guardian becausemy parents are deceased. But I
(13:58):
have what they call a circle ofsupport, which is people in my
life. People from like the ARCand the agencies to help me out
and my payee and my caseworkerand whatnot. We come together to
meet and once a month, and wehave a circle meeting where we
(14:25):
discuss goals and we try to workand trying to achieve them.
Lani Jennings-Hall (14:35):
And Sarah, you and Mike are both part of
the Youth Ambassador Program,correct? Mike, do you want to
tell a little bit about what thegoal of this program is and what
you guys do there?
Mike T. (14:48):
Well, the goal of the Youth Ambassador Program is the
project is to teach supporteddecision making and other
alternatives to guardianship. WeAnd to the youth from several
states, our first group ofstates was this, Wisconsin,
Vermont in Georgia. And they areabout to truly wrap up their
(15:13):
project. We've had two months ofpresentations from Georgia and
Vermont, and coming into Januaryin the state of Wisconsin will,
or the youth from Wisconsin willpresent on projects that they
worked on, to talk aboutsupported decision making an
alternatives that they'velearned about and want to be
(15:35):
more involved in. Our secondgroup of states started several
months ago, and they're into themonthly check ins in Oregon, New
Jersey, South Carolina, Indianaand Michigan. And they are just
now beginning on a 12 monthcycle of presentation or learn
(15:56):
of learning more, and about whatthey've learned throughout the
12 weeks. We we were doing it 16For the first group and we cut
it down to 12. They they'relearning more and then after 12
months, they will startpresenting on their process. And
we will have a presentations byeach of those states. That's
(16:22):
what they learned about thedifferences in between supported
decision making and guardianshipand other alternatives like Tom
mentioned earlier, Rep Paee, andseveral others. My mom, my mind
is slipping me right now. So
Lani Jennings-Hall (16:39):
Well, I think that is a really good
point that you made thatguardianship is different, and
in different sites and everystate is working towards towards
different goals. How are theother states working to change
the mindset from guardianship tothese other alternatives? I know
this is the goal of thisprogram, how are these other
states working working to changethis mindset?
Mike T. (17:01):
Well, some of them already have alternatives to it,
and some are working to talk totheir states in to talk about
putting supportive decision inplace, or alternatives that are
, don't put someone under totalguardians, and this if they
(17:23):
don't, sometimes it's like allor nothing. And if they don't
have their alternatives, it'simportant to for people to be
able to make choices, because weall learn from from making
choices. And that's what they'reworking on. The youth have
worked on presenting projectsand that can present to others
(17:48):
and their state's done one ofone of them have done a book
talking about their life andwhat sources they made. Some of
them have done videos. Youthfrom Georgia, Derek, he's done.
He does drawings, like meaningfacilitation drawings that talk
(18:11):
about what's going on. So he canuse those drawings to talk about
what guardianship is, whatsupported decision making is and
things so that he was gotten tomeet him a few weeks ago in at a
conference and he spoke aboutand sat him in and other youth
(18:33):
onboard that talked about howthey're using things to also
help in making a business of it.
So that's a little bit of howthey're using their projects.
And thanks for reaching out totheir states.
Tom Masseau (18:50):
Yeah, sorry, like, so one of the things that I find
interesting is that, you know,all of these other states is,
and Sarah you being up inMichigan and Mike, you being a
Trainer for Youth across thecountry and trying to get
alternatives of guardianship toallow people to maintain their
rights without and have themmake their own decisions. Yet
(19:11):
here in Arkansas, you know, wehave nothing but guardianship. I
mean, as soon as somebody getsto the age of graduation, they
you know, automatically, youknow, chances are you're going
to become under guardianship.
So, sir, I find your experience,you know, growing up and your
parents allowing you to attendyour own IEP meetings and making
those decisions and learningfrom those mistakes. Very
(19:33):
helpful, that we can, you know,talk about here in Arkansas,
because that's far and fewbetween for a lot of self
advocates, so I'm wondering whatwhat are you what have what is
what is self advocates ofMichigan doing to look at
alternatives to guardianship andwhat are you doing, you know,
with advocating and legislationand just talking about
(19:56):
alternatives to guardianship inMichigan. So Oh, I guess my
question is, what advice do youhave for self advocates in
Arkansas? To advocate foralternatives to guardianship?
Sarah C. (20:13):
Um, that's a good question. Um, well, I guess I
can say is tried to join anadvocacy group and work on the
guardianship issue. Work ontrying to change people's
(20:36):
mindset from wanting to just putpeople with a guardian. And, and
try to say, hey, there's otheralternatives, besides just
putting people with a guardian.
I think and we're, we probablyhave a lot of work to still do,
because I think the idea hasbeen around a while, but it's
(20:59):
just trying to get people tochange their mindset. And
basically, that's not alwayseasy. And sometimes it takes a
lot of advocating to do that,and years of advocating to do
that.
Tom Masseau (21:18):
Right. Yeah.
Mike T. (21:20):
Can I add something there? There's a lot of
misunderstanding to on whatsupported decision making is and
is not. So I think a lot of thathas to do with education on what
supported decision making is.
Lani Jennings-Hall (21:35):
Yeah, I think you're right, Michael. And
I think, Mike, question for you.
What advice do you have, I knowyou're, you're a strong
self-advocate here in Arkansas,you know, what advice do you
have for self advocateadvocates? Or even you know,
families going through thisprocess? Or are you know, maybe
you're wanting to talk to somelegislators? What advice do you
have?
Mike T. (21:57):
Well, my advice would be first off to research, the
difference between guardianshipand alternatives to
guardianship, supported makingor whatever, Rep Payee, so that
you can understand what it doesand what it does not do. Also,
(22:19):
it allows your your child tospeak and, and learn from them
what what they would like,because there they are the
biggest person that should bethe most important person in the
room. And as Sarah has done, ifyou want to be in the room for
an IEP, that's great. But takeyour child in the room with you
(22:43):
so that they are the center ofthe room. And they're able to
communicate, let themcommunicate their needs and
wants. Because that's somethingI never I had speech therapy as
a child and everything. But Idon't remember ever, ever
needing an IEP. But if I wouldhave needed one, it would have
(23:06):
been very important from nowthat I'm an adult to know that I
sort of had a voice in it. I dothink that there needs to be
more communication betweenpeople with disabilities as to
here in Arkansas as to what'simportant on self advocacy, and
(23:29):
supportive decision and makingchoices and being able to learn
from one another because we needto support one another period.
That's one thing that supporteddecision making is sometimes we
support one another,
Lani Jennings-Hall (23:43):
you know, Disability Rights Arkansas, this
is definitely one of our ourpoints that we are hoping to
work on with legislation thisyear, what can we do? What is
Disability Rights working on?
Tom Masseau (23:57):
You know, I'm going to kind of blend what Sarah's
advice and Mike's advicetogether is. I think we in here
in Arkansas need to need tochange the culture. And we need
to shift the conversation fromone have complete control over
somebody's life, to one thatallows an individual to make
(24:17):
decisions. And I really likeSarah's a quote and we might use
this going forward that mistakesare a life lesson, not a life
sentence. And I think that'simportant as we go forward and
to change the mindset of thosepeople who think that just
because an individual with adisability, that if you have a
disability, you can't make anydecisions whatsoever, that I
(24:39):
need to have complete controlover you. And I think that's,
you know, not the right attitudeor right things that we need to
be talking about. And soDisability Rights Arkansas,
we're going to be pushing foralternatives to guardianship,
one that outputs the individualin control of their life with
those circle of supportersaround them. You know, similar
to what Sarah was talking about.
You know, and she has a circleof friends and supporters around
(25:02):
her where she meets monthly. Ithink that's something that we
need to be talking about here inArkansas, and getting rid of
those myths that people thinkthat if we open up and provide
alternatives to guardianship foreverybody, everybody in you
know, is going to revolt, andthere's going to be chaos in the
in the state of Arkansas. That'snot true. I think we need to,
(25:22):
you know, if I had my way, Iwould just say, let's just do
away with it. And a lot ofpeople make decisions, you know,
that's what they do. Andespecially, I think, with
regards to voting, you know,here and here in Arkansas, you
know, I mentioned that if youhave a guardian, you cannot
vote?
Sarah C. (25:39):
Well, I just think that there's, and I know, this
may never happen, but I think itshould be allowed where, wards
are allowed to learn autonomy,and prove to a judge, or a
lawyer, that they can keep theirautonomy for a time, and then
(25:59):
decide based on that, whetherthey should need guardianship or
not. Because each individualdoes have different needs.
Tom Masseau (26:08):
You're absolutely right, Sarah, and I think, you
know, everybody is, everybody isan individual, and everybody has
their own needs. And, you know,everybody should be able to
explain, you know, what theywant in life and how they're
going to get there. But I justwant to go back to the voting
piece. And because it's, it'scritical, and that it is a
constitutional right for peopleto have it to be able to vote,
(26:28):
and to suggest that just becausesomebody has a disability, they
they don't know who they'revoting for, they can't make
those decisions. You know, Ilook back, and we have many
college students and grownups,you know, across this country,
that have no idea what'shappening in the political
realm, or what issues arehappening. But yeah, they're
able to vote. And I can assureyou and all of the self
(26:51):
advocates and peopledisabilities that I've spoken
to, they are fully educated onwhat's happening, because the
issues that are being discussedhere in Little Rock, whether
it's in Lansing, whether it'sin, you know, in Washington,
wherever it may be, they have adirect impact on their lives. So
they're going to be activelyinvolved in these conversations,
whereas college students andadults whomever, yeah, I like
(27:14):
this person, I like that person.
So I think, you know, we need togo back and have that
conversation of, you know,mistakes are life lessons, not a
life sentence. So so I'm goingto be borrowing that for quite
some time. So thank you, Sarah.
Lani Jennings-Hall (27:26):
He'll end up putting it on his board. But
does anyone have any, any lastminute comments you want to add?
Mike T. (27:33):
My comment would be when it comes to people with
disabilities, listen to theperson and let let their voice
be heard. And by you. That's toooften people with disabilities
are not valued in Arkansas oranywhere. Because they think,
(27:56):
because someone has adisability, they do not
understand. Even those were justphysical disabilities. Some
people do not value them becausethey think just because they
don't know what they're doing.
Sarah C. (28:14):
And also, another thing too, is, we're have to
also try to undo the myths aboutalternatives to guardianship
because there are myths toalternatives to guardianship.
Like, if I, you can correct meif I'm wrong, Tom. Doesn't isn't
(28:35):
there are people that think ifyou do alternatives to
guardianship, that there wouldbe like, chaos, or that, that
there will be no order? Yeah,
Tom Masseau (28:46):
yeah. You know, some of the arguments, this is a
great point, Sarah, because someof the arguments, or some of the
myths that were happening herein Arkansas, when we were
talking about alternatives toguardianship was that for
individuals living ininstitutions, that if we, if we
had enough, if we were to be ifwe pass, alternatives to
guardianship, or supportivedecision making, that all of
(29:06):
those individuals in there wouldrevolt. And and and say, This is
not where I want to be, I wantto move into the community, as
if that's a bad thing. But they,you know, that was the myth
behind it, that we can't allowthat to happen. So that was just
one and I'm sure there's manyothers across the state here in
(29:26):
Arkansas, and across the countryabout, you know, allowing people
to make decisions on their own.
Sarah C. (29:32):
So it seems like every time we turn around, we're
always trying to undo the myths.
Mike T. (29:38):
Yeah, it's all about the fears. Right?
Tom Masseau (29:41):
The fears of the unknown. Yes.
Lani Jennings-Hall (29:44):
Thank you for joining me today. And thank
you for listening to our veryfirst episode of Including You.
If you need more information onguardianship, you can check out
our previous webinar titledGuardianship: Rights, Remedies
and Responsibilities on ourYouTube channel. You can also
find the link to this in ourshow notes. At DRA, We envision
an Arkansas where people withdisabilities are equal members
(30:07):
and their communities and candictate their lives through self
determination. If you'reinterested in more information,
make sure to subscribe to thispodcast and visit our website.
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