January 31, 2023 • 40 mins
Life is about informed decisions. The question is - whose life is affected by those decisions? Whose rights are stripped?
In this episode, we are diving deeper into alternatives to guardianship, more specifically, supported decision-making. Today we are joined by self-advocate Jordan Anderson, whose entire life was uniquely impacted by an overnight decision to support his rights. We are also joined by Hezzy Smith, Director of Advocacy Initiatives at the Harvard Law School Project on Disability and proud sibling.
Guests:
- Jordan Anderson, Self-Advocate & Youth Ambassador Participant
- Hezzy Smith, Director of Advocacy Initiatives at Harvard Law School Project on Disability
- Twitter - @HLSPod
- Facebook - Harvard Law School Project on Disability | Hezzy Smith
- 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 (00:01):
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 that 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
(00:23):
of love life with a disability.
I'm your host LaniJennings-Hall. In this episode,
we are diving deeper intoalternatives to guardianship,
more specifically supporteddecision making. Today I'm
joined by self advocate JordanAnderson, whose entire life was
uniquely impacted by anovernight decision to support
his rights. We are also joinedby Hezzy Smith, Director of
(00:47):
Advocacy Initiatives at theHarvard Law School Project on
Disability and proud sibling.
Tom Masseau, Executive Directorof Disability Rights Arkansas is
also back with us on thisepisode. Thank you for joining
us today.
Hello, and welcome back toIncluding You. We are here with
our second part, talking aboutalternatives to guardianship.
(01:09):
And I want to start off talkingto you, Jordan, do you think you
could introduce yourself? Tellus a little bit about your
story?
Jordan Anderson (01:19):
Well, thank you. I appreciate all of you
guys that are on the podcasthere today. And I just
appreciate you giving me thisopportunity. So I am 20 years
old. First off, my name isJordan Anderson. I am from the
(01:40):
central part of Wisconsin. I'mthe Youth co-lead on the
supported decision makingproject with the youth voice,
youth voice your choice project.
We will got more on that laterin the podcast, we'll probably
talk about it. So Wisconsin was,three state, one of three states
(02:05):
that got selected And really,I'm just so honored to be a part
of the Wisconsin team.
In 2020, the year of COVID. Itwas I maybe, I would say 2019,
(02:32):
the year before COVID, Iattended the self determination
conference at the annualconference that our BPDD the
center holds and is part of. AndI do a lot of advocacy work, the
(02:55):
developmental council here inWisconsin, and I, my teacher saw
that I had a passion for publicspeaking. And she knew that I
wanted to do some sort of thisduring my life. And so she
(03:17):
basically forced me to go to theconference. Needless to say,
I've learned a lot. And one ofthe sessions I attended was on
alternatives to guardianship.
And that was the first time Iheard about alternatives to
(03:37):
guardianship. And literally,like the night before, I did not
know I had a court hearing likethat next day on the work I just
got done talking about so it wasa kind of like a blessing in
disguise. And I basically toldto my mom and to my dad, where I
(04:04):
learned about and I did not knowthis is what the court hearing
was about.
But my mum and dad told itbecause they didn't even think I
needed to go at first like theywent in the morning. And then
(04:28):
they came and got me out ofschool. And because they thought
it was the same thing. Theywanted to do some more
investigating work, like learnmore about supported decision
making before they, before theymade the decision. And needless
(04:51):
to say, I'm glad they took myadvice and we actually had to
hire one of my dad's former workattorneys, because the person
that we got appointed to thecounty wasn't able to fit my
(05:21):
needs. So my attorney met, likea half an hour later, when they
got out of school. And they didsome drawing up, like, and more
research about it.
And I was prepared to answerquestions from the judge and
(05:46):
everything. And because I didn'tknow what they were gonna ask,
apparently, before I got there,they said, I was incompetent.
Because I got a guardian adlitem came to my house a couple
days prior for the courtproceeding, and asked me
(06:09):
questions like, "What day is it?
What state do we live in?" Basicquestions like that, and I
answered them all correctly,because I'm very knowledgeable
when it comes to that stuff. Butsomewhere along the lines, he
(06:30):
said, I'm incompentent. And thenI went back to my court hearing,
I went in the courtroom with onelawyer. And then my parents, and
my lawyer just had a casualconversation, because I really
(06:52):
enjoy sports and hunting. And Ithink that's what we were
talking about. My dad's friendthat he knows.
I said, He's not incompetent,and then the judge came. And
then needless to say, we didn'teven get gavel in, but it was
(07:17):
quite a experience. And I'm justglad my parents and everybody
listened to me at the correcttime. Because without that, I
really like to vote and to makemy voice heard. And with some
cases with guardianship, not allbut some cases, people lose
(07:42):
their right to vote. So I just,that's very important to me. So
that's another reason why I keptmy right to vote. And I also
like hunting, like I saidbefore, but I know it's a long
winded old story, but I like thequick version, even though it's
(08:03):
really quick.
Lani Jennings-Hall (08:05):
No, I actually have a lot of questions
from that story. First off, Imean, that presentation that you
went to, must have been somekind of impactful for you to you
know, to take that home to yourparents, if they knew they had a
court hearing the next day tomake this big change in your
life to then you bring home thisinformation of, hey, I had this
(08:28):
presentation, let's talk and forthem to make such such a pivot.
I mean that that had that Ican't even imagine such a such
an impactful presentation. Imean, that you kind of touch on
a couple of things. This theserights that you're able to
maintain from this, this bigchange. Can you talk about some
(08:53):
of those other life changingthings that happen just from
from this, I mean, thispresentation, I mean, I feel
like this was a big pivot inyour life.
Jordan Anderson (09:01):
Like this was the first thing that I really
learned about this organizationthrough this teacher. And I'm
doing a ton of work with them.
Now I sit on a lot of boardswith them now, in the past three
(09:23):
years, I probably met morepeople because my state and
other states with this project,it's unbelievable. I never
thought I would meet somebodyfrom Georgia or Vermont or
anybody like that. And it justcrazy to think that and I'm just
so happy and thrilled to speakabout it and go across the state
(09:52):
with numerous present occasions.
I like the power of zoom,because the power of zoom makes
me reach every, every, evenacross the United States, I
won't be on here today with thepower of zoom. So I just really
(10:18):
appreciate that. Because if oneperson knows about guardianship,
the whole will, and it mighttake some time, but the whole
world might be better off. Iknow. supported decision making
isn't for everyone. But I justwant to make sure people know my
(10:39):
story and people will educatedbefore they make their choice.
Lani Jennings-Hall (10:46):
Thank you for that. Jordan. I also want to
touch on a little bit about yourstory. The part of it sounded
like originally they ruled youincompetent and I want to I
assume that this is somefrustrations many people may
struggle with maybe inattempting to get alternatives
to guardianship. Hezzy, Tom, canyou guys talk a little bit cuz
(11:10):
yeah, I guess I should do alittle introduction here. You
are the director of advocacyinitiatives at Harvard Law
School Project on Disability. Idon't know if you want to kind
of talk a little bit aboutyourself before I throw you a
question there. But I'm kind offeel like this is probably your
expertise here.
Hezzy Smith (11:27):
Sure. Thank you.
It's a pleasure to be here. Andit's, it's hard to be here in
the shadow of Jordan, who's gota great story. And I'll try to
do my best to not hold you back,Jordan. I am an attorney barred
in the state of New York, and Iam a sibling, an older sibling,
(11:48):
I have a younger sister who hasDown syndrome. And she has been
a big inspiration for methroughout my life. And for the
professional choices that I'vemade. Before starting work on at
the Harvard Law School projecton disability, I was had the
(12:09):
opportunity to work for thesupported decision making New
York Project, which is thelargest supported decision
making pilot program in theUnited States, and heard lots of
stories, some similar toJordan's, where folks get
information at the right time inthe right place, and are able to
(12:36):
make informed choices with thatinformation. And others who say,
Ah, if only I had known.
And I think, you know, onebarrier to using alternatives to
guardianship that comes uprepeatedly is exactly what
(12:59):
Jordan, you know, kind of puthis finger on, which is that
notion of accessing easy tounderstand information about
what alternatives are and whatthey're not. Which is really,
really important. And on thesame, kind of the flip side of
that coin, lots of people havelots of misinformation about
(13:21):
guardianship. I've heard verystrange stories where people
will say to me that their doctortold them that if they get
guardianship, they can keeptheir kids out of jail, if they
ever come into contact with lawenforcement, and it's not true.
(13:42):
And I don't know why doctors aregiving legal advice.
I wouldn't take my stock tipsfrom my mechanic, so why am I
getting legal advice from mydoctor?
And so it's not just kind ofgetting good information about
alternatives out there, but alsopushing back against and
(14:04):
correcting. You know, themisinformation out there about
what guardianship does and doesnot do. And Jordan is absolutely
right, that guardianship,depending on your state can
affect your right to vote. Andgiven Jordan's you know, hobby
of hunting, it can also affectyour right to access firearms.
(14:28):
And so there's a lot oframifications that people might
not be aware of when they golooking for guardianship and
they might be doing it based onnot a lot of information. So I
think, you know, we got we gotto do two things. We got to wise
up about alternatives and likeJordan said, get that
(14:48):
information into the hands offolks. So one really good
resource that the Center forYouth Voice Youth Choice has put
together is a state profile ofall 50 states and the District
of Columbia of the alternativesto guardianship that are
available in their state. It'savailable on the website:
(15:08):
youth-choice.org.
And just making that informationavailable all in one place,
because there's a little bit ofdifference from state to state
about what certain alternativesdo and don't do. But the other
big thing, which is sometimesharder, because a lie will get
around the world faster than orin the time that it takes for
(15:32):
the truth to lace up its shoes,kind of countering
misinformation andmisconceptions about what
guardianship is, for a lot offolks, it's, it makes sense to
them, that they would continueto have a very important and
prominent role in their child'sadult decision making. And so
(15:57):
from, you know, kind of acaregiving protective
perspective makes a lot ofsense, oh, yeah, I will, you
know, go to the court and getthe permission and fill out the
form, lots of families have tofill out a lot of forms, in
order to get the don't make awhole lot of sense all the time,
in order to get the things thatyou know, their loved one needs
(16:20):
and wants. And so when folkshave been conditioned through
most of the special educationand accessing benefits, and that
all those navigating all thosesystems to fill out forms, kind
of the message that you need toget guardianship in order to do
these things, you know, makessense, on some level, and lots
(16:44):
of times they're not given thesame amount of information or
quality information aboutalternatives. And so there's
kind of this two front, youknow, battle, right, not just
pushing good information aboutalternatives out there, but also
countering that informationabout guardianship that you
know, people are using to makedecisions that have long term
(17:07):
consequences.
Lani Jennings-Hall (17:09):
I think you hit like, the nail on the head,
people have absolutely been justlike, put in this mindset of Oh,
yeah, here's the this, this justseems like the the next step of
what is expected, just afterafter years and years of just
forms. And I've heard I've heardmany times in like, just this
just the education world of,it's just, it's a caregiving
(17:31):
thing, it's the next step. And alittle bit of time, I have been
in this world of hearing thesethings.
Tom Masseau (17:38):
And I'm so glad you brought that up. Lani and Hezzy.
And especially Jordan, thecompetency issue is something
that we experienced, we see alot of here in Arkansas, and
it's just a perception, youknow, if you have a disability,
you must be incompetent. Or youmight not, you must not be able
to make your own decisions. Andthat when you get to the age of
(17:59):
18, it's just so common here inArkansas, that, you know,
guardianship is to, you know,putting on a pair of shoes or
whatever. I mean, it's justlike, you get to that age, and
boom, there you go. So trying tobreak that myth and Jordan, I'm
glad you touched on thecompetency piece. And, and, and
just having that conversationwith somebody about your
(18:19):
interest, but you want to doreally brings a different
perspective to it. And it's notone that we in Arkansas, see a
lot of, it's just boom, youknow, you're getting 18 You go
right to court, without havingthat conversation with the
individual of like, okay, sowhat are your hopes and dreams?
What do you want to accomplish?
Do you like to hunt? Do you liketo vote? Because here in
(18:40):
Arkansas, you know, since 2001,if you have a guardian, you can
vote. So we're we're literallystripping the rights away of
individuals with disabilitieswho want to be in the community
want to participate, but becauseof that perception, it just
doesn't happen. So we have a lotof work to do here in Arkansas
to get people to have begunhaving those conversations with
(19:01):
with individuals about it. Whatdo you think that we can do here
in Arkansas? Jordan, I knowyou've done a lot of policy
work, and you testified inwithin Congress and different
things. So what can we replicatehere? What can we do here in
Arkansas, to get people tochange their minds about
guardianship and alternatives toguardianship?
Jordan Anderson (19:23):
Well, thanks for the question, Tom. That's
kind of a loaded question, butI'll try to put it in simple
terms. Well, first I don't knowwhat your setup is, but the
Wisconsin developed a Wisconsinboard for developmental and
(19:49):
physical disabilities. It, is,has very strong base with the
legislative community and theparticularly the Wisconsin
Public Schools, the DPI. So wedo a ton of work in our schools
(20:15):
in trying to get the word out.
Some schools don't necessarilyfollow through, like some
schools, but it's worth, worth atry.
And you just have to build,build, keep building and have
outstanding advocates, like me,and several others, across the
(20:43):
US that are passionate aboutthings and want to make change
for the better. So I just, Ireally, hope I answered that
question. Okay. But, um, I justreally feel like, it really
(21:04):
takes time because Wisconsin'slaw, I believe we had a law in
2013. So if any, somebody hadwanted to do supported decision
making, it's really hard toreverse, like, supported
(21:28):
decision making thing, once youare determined by the court,
that you are under guardianship.
And I just really wanted tostress that we're kind of in the
same predicament for those whoreally want to.
(21:49):
That's my next task, or nexttour to talk to somebody how we
can repeal that, because I knowa lot of friends that, like in
Wisconsin that didn't get thesame information I did. And I
just feel tremendously bad aboutthat. Because the just at the
(22:14):
same level, as I did, so I'mjust fortunate every single day
to carry on this work.
Hezzy Smith (22:23):
Yeah, and I will just follow up on Jordan's, you
know, suggestions about, youknow, access to information. And
one of the really unique thingsabout Wisconsin supported
decision making law is that itdoes require the Department of
Public Instruction to provideinformation about alternatives
to guardianship, to parents andstudents, as part of the
(22:46):
transfer of rights process,which happens when the special
education students reach the ageof majority and continue to have
individualized educationprograms under the Individuals
with Disabilities Education Act.
And that's really important thataccess to information piece, I
would just add to that, that,and this is I think, you know,
(23:06):
one of the big value ads of theCenter for Youth choice and
Youth Voice is that, you know,who are we giving that
information to.
A lot of times when we talkabout making sure people are
informed, the emphasis is kindof on parents. And, you know,
(23:27):
while they are importantstakeholders, and while a lot of
times they are the initiators ofguardianship petitions in court,
so it's good to, you know, dosome information, sharing with
them, at the same time, whoselife is affected, it's the
person with disability. And so,I think it's very, very
(23:52):
important that whateverinformation sharing happens that
it also really targets andprioritizes getting good and
easy to understand informationinto the hands of people with
disabilities who might be partof a guardianship proceeding.
(24:12):
And, in anticipation of that,just keeping them informed about
what it means to make decisionsas an adult here, your options,
you can use none of them, youcan use any one of them. Because
at the end of the day, you know,if as a society, we have these
questions about you know, theboogeyman of competence, who's
(24:34):
competent, who's not, which isthe wrong question to be asking
in the first place.
You know, we should be doing alittle bit more to, you know,
put people in a position to makeinformed choices about how
they'd like to make decisions asan adult, rather than, you know,
creating two boxes and trying toyou know, sort people out and
(24:55):
put them into one box and intoanother which is, you know, it's
a fiction.
And I think, you know, what I'veseen in terms of policy is a
little bit less of an emphasison what self advocates want,
from states' efforts to adoptpolicies or laws on supported
(25:16):
decision making. And a littlemore about what, you know, well
intentioned service providers,what well intentioned attorneys
like myself, or family membersmight want from those policies
and programs. And so I thinkit's really, really important
for anyone who's thinking aboutdoing some doing some good in
(25:38):
this space, is instead ofrunning to your legislator, get
a group, find your local selfadvocacy group and your
statewide self advocacy group,what have you, make sure they're
really educated about whatsupported decision making is
what other states are doing.
Have a study group so thatthey're informed, and that they
(26:00):
can kind of develop their ownpolicy platform and come to
their own conclusions about whattheir legislators and
policymakers in their stateshould be doing. And, you know,
I think, you know, from anobjective perspective, some of
the stuff that Wisconsin hasdone is probably going to make a
really big impact. And it'sprobably going to make a lot of
(26:21):
positive changes in a lot ofpeople's lives. But from a
process perspective, I think wereally need to, as a community,
be a little bit more thoughtfulabout what role are self
advocacy organizations playingin defining the alternatives to
guardianship and supporteddecision making systemic change
(26:44):
agenda.
And so that's something I thinkthat this the Center for Youth
Voice Youth Choice is reallyinvesting in educating youth,
especially with disabilities, sothat they are part of these
conversations. But also, I thinkall of these organizations and
everybody listening to thispodcast should really be
thinking,in my state, whateversupported decision making or
(27:07):
alternatives to guardianshipadvocacy is happening. Is it
self advocacy organization led?
Or is it led by otherorganizations? Even if there are
one or two self advocates thatare part of a coalition? Is this
led by self advocacyorganizations? Because at the
end of the day, you know,nothing about us without us
(27:29):
should also apply to, you know,these changes that are coming
down the pike?.
Lani Jennings-Hall (27:34):
No, I think that's that's a fantastic,
fantastic point as Jordan, doyou have something to add?
Jordan Anderson (27:39):
Yes. If I could just add quickly. Our Governor,
this is related to guardianship.
But our governor recently signeda bill, I think it was last
summer here in Wisconsin, thatis requiring anybody that's
(28:01):
pursuing guardianship, that theyhave this specific training, and
like, they look at otheralternatives first, so that's
another caveat. For people thatare automatically most judges,
(28:23):
some judges would want to justpush guardianship right away.
And that's gonna help us here inWisconsin.
Lani Jennings-Hall (28:37):
I also wanted to add on the on Hass
point about the self advocacygroups. Tom, did you want to
talk a little bit about ArkansasAlliance for Disability Advocacy
group here at Disability RightsArkansas?
Tom Masseau (28:51):
Yeah, so the one of the things that we're doing here
in Arkansas, we were funded bythe Arkansas Governor's Council
on Developmental Disabilities tobring together and form a
project called as Lanimentioned, Arkansas Alliance for
Disability Advocates. And theirwhole focus is to educate and
empower individuals withdisabilities on issues they face
(29:13):
every day. So really looking atbringing people together and
kind of bridging those gaps,whether it's the whether it's
looking at forming self advocacygroups in the community, looking
at high school age youth up topost secondary, to really
educate people about theirrights, and how to reclaim their
(29:33):
voice. Because everybody has avoice. It's just some people's
voices is not heard. So we'rereally we're really working in
supporting self advocates acrossthe state and getting them to
reclaim that and to take a standand take their space and say,
you know, this is this is anissue that's important to us.
So the AADA program is going tobe key in pushing some of these
(29:57):
issues forward here in Arkansasand also reaching out to, you
know, Wisconsin and talking tothe Wisconsin self advocates to
say, what can we do in Arkansasto help support self advocates
and get people more engaged insome of these conversations that
that, you know, need to be hadthat's not happening here in the
state? We're slowly buildingthose bridges going forward.
Lani Jennings-Hall (30:20):
All right, final question to either or, or
both, whichever. What advice doyou guys have for advocates
trying to talk to theirlegislators, and even family
members that are trying tocreate this change?
Hezzy Smith (30:34):
So my advice is not necessarily to go running your
legislators. There are somedifferent examples of what some
different states are doing withregard to changes to promote
alternatives to guardianship.
Some of the laws are better thanothers. Ironically, even though
(30:55):
a lot of the disability rightscommunity has been concerned
about the lack of data. Withregard to guardianship, we don't
necessarily have a lot of dataon which kinds of supported
decision making or other reformsare most impactful.
(31:17):
And so I think, in reallyimportant ways, and this is not
to throw throw water, cold wateron anybody's advocacy efforts,
but to really think about whatare the changes that you would
like to see? What policies andpractices need to change in
(31:39):
order for those changes toactually happen, and then, who
do you need to talk to in orderto get those changes made,
because I think it would beunfortunate if, you know, there
was everyone running arounddoing a copy and paste of, you
know, so and so state's law,because often, the first is not
(32:03):
the best, the first crack is notalways the best one.
And so I think this is actuallyan interesting time to for
advocates, whether they're selfadvocates, or whether they're
allies, to do some research, dosome soul searching, look around
and try to learn, because onceyou get your supported decision
(32:25):
making law say, it's gonna be awhile, if there's something
wrong with it to a legislator isgoing to pay enough attention to
you to want to go back andchange it. And so kind of pick
and stick and do your research,before you make a pick, because,
um, you know, some of thelegislation, some of the reforms
(32:47):
that have been happening, havebeen on the basis of data and
experience through pilotprograms that, you know, provide
a blueprint or, you know, somesort of proof of concept before,
you know, the law or policiesare changed. And in other
places, that hasn't been thecase. And so, and I would say,
(33:10):
it's also, you know, one otherreason to not necessarily go run
to legislature a legislator, isthat there's a lot that you can
learn about the kinds of changesyou want to see by practicing
around your kitchen table.
As Eleanor Roosevelt said, youknow, human rights start at
(33:32):
home. And, you know, you don'tneed a law, in order to develop
whatever tools you think youmight need to get people
trained, in order to whateverchanges come, you know, breathe
some good life into them,because at the end of the day,
(33:54):
laws are pieces of paper. And,you know, would you rather have
a good law and not so goodpeople implementing it? Or would
you rather have a bad law andgood people, really, you know,
working hard to make the most ofthat bad law. I think I would
prefer the latter in most cases.
And so kind of building thosecoalitions, getting people
(34:16):
together, and making sure thatyou got a solid base, and a
solid understanding of what kindof changes you want to happen
and to be really strategic aboutit. Because, you know, this
isn't kind of like guardianship,you know, going for systemic
reforms. You can't start+select, I'm dating myself with
that reference, but you can'tjust hit undo. If you you know,
(34:39):
sign yourself up for somethingthat, you know, you kind of
regret later. And just onecautionary tale, I think is, you
know, the mixed or unevenexperience of folks with person
centered planning. It's a greatidea. It's a great concept.
How many places have good lawsthat are followed is, I think, a
(35:03):
really open question. And, youknow, one, I think concern that
everyone should be thinkingabout. And this was told to me
by the President of the SelfAdvocacy Association of New York
State, Tony Phillips, is that henever wants supported decision
making to become just anotherprogram, in his words. And so
(35:26):
how do we prevent supporteddecision making from, you know,
for example, becoming justanother Medicaid reimbursed
service. And we want people tobe supported to do support and
decision making and explore allthe options out there. But what
(35:46):
kind of guardrails and firewallsdo we need in place to make sure
that, you know, the promise ofthese developments doesn't get
lost in the shuffle when itcomes time for things to be
implemented that a large scale?
So I would just kind of sayingsome words of caution, you know,
learn about what reforms youwant form alliances and good
(36:07):
networks, and then maybe thinkabout, you know, second
generation problems that mightarise once you get what you
think you're looking for?
Lani Jennings-Hall (36:20):
Jordan, what would you like to add to that?
Jordan Anderson (36:22):
So I agree 100%, with Hezzy. And I just
want to just briefly touch onone or two points. I just, like
Hezzy said, don't necessarily gorun to legislators unless its
(36:45):
the last option possible,because once you go to your
legislator, like, I've beentrying to get ahold of my
legislators for the past, like,how many months and I'm finally
getting to meet with them, like,in a couple of weeks. So they're
(37:05):
really busy. And you better havesome concrete issues, that if
you want to bring up to thembefore you go, because they're
really busy. I know they'revoted in, but I guess, touch on
that. And, also, just keepspreading the word about
(37:31):
alternatives to guardianship.
Just, like I said before, andmultiple times, a guadianship
isn't for everybody. But if wehave people making their own
choices that are disabled, Ifeel much better, because people
with disabilities are just likeeverybody else.
(37:56):
So I really strongly push forpeople, if they're capable, you
know, make the choices that willbetter themselves, I say, go
ahead and pursue alternatives toguardianship. And once again, if
(38:19):
you are interested, to learnmore about the project, please
reach out to the podcast creatorand they will give you our
contact information. And I wouldlove to collaborate with you.
(38:40):
And if you have any questions, Iwill be happy to answer them.
And I'm just happy and honoredto be here because I have a very
powerful story. And I'm tryingto change one person's mind at
least, and making them aware ofalternatives going cheap, not
(39:06):
just the 11th hour and I wasthis close to not getting my
rights that I was able to haveright now. If I didn't go to
that conference, and stuff likethat, that's why I'm on so many
disability boards, and so manyother things in that why I'm
(39:28):
just having that you guys gaveme this opportunity to speak
with you guys today becausealternatives to guardianship are
very unique them. And not manypeople in the disability world
are elderly. People know butthey know if somebody's been
(39:50):
affected by it. So one at atime. We're going to make people
aware of it. Thank you and Ihope you enjoy this podcast.
Lani Jennings-Hall (40:02):
Thank you, Jordan, Hezzy, and Tom for
joining me today. And Jordan,thank you for sharing your self
advocacy journey. Make sure tocheck out the show notes for
additional links and resourcesfrom today's show. At DRA, we
envision an Arkansas wherepeople with disabilities are
equal members in theircommunities and can dictate
their lives through selfdetermination. And as made clear
(40:24):
in today's episode, we can'tcreate that change without
bringing self advocates to thetable. If you're interested in
more information, make sure tosubscribe to this podcast 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 that 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
(00:23):
of love life with a disability.
I'm your host LaniJennings-Hall. In this episode,
we are diving deeper intoalternatives to guardianship,
more specifically supporteddecision making. Today I'm
joined by self advocate JordanAnderson, whose entire life was
uniquely impacted by anovernight decision to support
his rights. We are also joinedby Hezzy Smith, Director of
(00:47):
Advocacy Initiatives at theHarvard Law School Project on
Disability and proud sibling.
Tom Masseau, Executive Directorof Disability Rights Arkansas is
also back with us on thisepisode. Thank you for joining
us today.
Hello, and welcome back toIncluding You. We are here with
our second part, talking aboutalternatives to guardianship.
(01:09):
And I want to start off talkingto you, Jordan, do you think you
could introduce yourself? Tellus a little bit about your
story?
Jordan Anderson (01:19):
Well, thank you. I appreciate all of you
guys that are on the podcasthere today. And I just
appreciate you giving me thisopportunity. So I am 20 years
old. First off, my name isJordan Anderson. I am from the
(01:40):
central part of Wisconsin. I'mthe Youth co-lead on the
supported decision makingproject with the youth voice,
youth voice your choice project.
We will got more on that laterin the podcast, we'll probably
talk about it. So Wisconsin was,three state, one of three states
(02:05):
that got selected And really,I'm just so honored to be a part
of the Wisconsin team.
In 2020, the year of COVID. Itwas I maybe, I would say 2019,
(02:32):
the year before COVID, Iattended the self determination
conference at the annualconference that our BPDD the
center holds and is part of. AndI do a lot of advocacy work, the
(02:55):
developmental council here inWisconsin, and I, my teacher saw
that I had a passion for publicspeaking. And she knew that I
wanted to do some sort of thisduring my life. And so she
(03:17):
basically forced me to go to theconference. Needless to say,
I've learned a lot. And one ofthe sessions I attended was on
alternatives to guardianship.
And that was the first time Iheard about alternatives to
(03:37):
guardianship. And literally,like the night before, I did not
know I had a court hearing likethat next day on the work I just
got done talking about so it wasa kind of like a blessing in
disguise. And I basically toldto my mom and to my dad, where I
(04:04):
learned about and I did not knowthis is what the court hearing
was about.
But my mum and dad told itbecause they didn't even think I
needed to go at first like theywent in the morning. And then
(04:28):
they came and got me out ofschool. And because they thought
it was the same thing. Theywanted to do some more
investigating work, like learnmore about supported decision
making before they, before theymade the decision. And needless
(04:51):
to say, I'm glad they took myadvice and we actually had to
hire one of my dad's former workattorneys, because the person
that we got appointed to thecounty wasn't able to fit my
(05:21):
needs. So my attorney met, likea half an hour later, when they
got out of school. And they didsome drawing up, like, and more
research about it.
And I was prepared to answerquestions from the judge and
(05:46):
everything. And because I didn'tknow what they were gonna ask,
apparently, before I got there,they said, I was incompetent.
Because I got a guardian adlitem came to my house a couple
days prior for the courtproceeding, and asked me
(06:09):
questions like, "What day is it?
What state do we live in?" Basicquestions like that, and I
answered them all correctly,because I'm very knowledgeable
when it comes to that stuff. Butsomewhere along the lines, he
(06:30):
said, I'm incompentent. And thenI went back to my court hearing,
I went in the courtroom with onelawyer. And then my parents, and
my lawyer just had a casualconversation, because I really
(06:52):
enjoy sports and hunting. And Ithink that's what we were
talking about. My dad's friendthat he knows.
I said, He's not incompetent,and then the judge came. And
then needless to say, we didn'teven get gavel in, but it was
(07:17):
quite a experience. And I'm justglad my parents and everybody
listened to me at the correcttime. Because without that, I
really like to vote and to makemy voice heard. And with some
cases with guardianship, not allbut some cases, people lose
(07:42):
their right to vote. So I just,that's very important to me. So
that's another reason why I keptmy right to vote. And I also
like hunting, like I saidbefore, but I know it's a long
winded old story, but I like thequick version, even though it's
(08:03):
really quick.
Lani Jennings-Hall (08:05):
No, I actually have a lot of questions
from that story. First off, Imean, that presentation that you
went to, must have been somekind of impactful for you to you
know, to take that home to yourparents, if they knew they had a
court hearing the next day tomake this big change in your
life to then you bring home thisinformation of, hey, I had this
(08:28):
presentation, let's talk and forthem to make such such a pivot.
I mean that that had that Ican't even imagine such a such
an impactful presentation. Imean, that you kind of touch on
a couple of things. This theserights that you're able to
maintain from this, this bigchange. Can you talk about some
(08:53):
of those other life changingthings that happen just from
from this, I mean, thispresentation, I mean, I feel
like this was a big pivot inyour life.
Jordan Anderson (09:01):
Like this was the first thing that I really
learned about this organizationthrough this teacher. And I'm
doing a ton of work with them.
Now I sit on a lot of boardswith them now, in the past three
(09:23):
years, I probably met morepeople because my state and
other states with this project,it's unbelievable. I never
thought I would meet somebodyfrom Georgia or Vermont or
anybody like that. And it justcrazy to think that and I'm just
so happy and thrilled to speakabout it and go across the state
(09:52):
with numerous present occasions.
I like the power of zoom,because the power of zoom makes
me reach every, every, evenacross the United States, I
won't be on here today with thepower of zoom. So I just really
(10:18):
appreciate that. Because if oneperson knows about guardianship,
the whole will, and it mighttake some time, but the whole
world might be better off. Iknow. supported decision making
isn't for everyone. But I justwant to make sure people know my
(10:39):
story and people will educatedbefore they make their choice.
Lani Jennings-Hall (10:46):
Thank you for that. Jordan. I also want to
touch on a little bit about yourstory. The part of it sounded
like originally they ruled youincompetent and I want to I
assume that this is somefrustrations many people may
struggle with maybe inattempting to get alternatives
to guardianship. Hezzy, Tom, canyou guys talk a little bit cuz
(11:10):
yeah, I guess I should do alittle introduction here. You
are the director of advocacyinitiatives at Harvard Law
School Project on Disability. Idon't know if you want to kind
of talk a little bit aboutyourself before I throw you a
question there. But I'm kind offeel like this is probably your
expertise here.
Hezzy Smith (11:27):
Sure. Thank you.
It's a pleasure to be here. Andit's, it's hard to be here in
the shadow of Jordan, who's gota great story. And I'll try to
do my best to not hold you back,Jordan. I am an attorney barred
in the state of New York, and Iam a sibling, an older sibling,
(11:48):
I have a younger sister who hasDown syndrome. And she has been
a big inspiration for methroughout my life. And for the
professional choices that I'vemade. Before starting work on at
the Harvard Law School projecton disability, I was had the
(12:09):
opportunity to work for thesupported decision making New
York Project, which is thelargest supported decision
making pilot program in theUnited States, and heard lots of
stories, some similar toJordan's, where folks get
information at the right time inthe right place, and are able to
(12:36):
make informed choices with thatinformation. And others who say,
Ah, if only I had known.
And I think, you know, onebarrier to using alternatives to
guardianship that comes uprepeatedly is exactly what
(12:59):
Jordan, you know, kind of puthis finger on, which is that
notion of accessing easy tounderstand information about
what alternatives are and whatthey're not. Which is really,
really important. And on thesame, kind of the flip side of
that coin, lots of people havelots of misinformation about
(13:21):
guardianship. I've heard verystrange stories where people
will say to me that their doctortold them that if they get
guardianship, they can keeptheir kids out of jail, if they
ever come into contact with lawenforcement, and it's not true.
(13:42):
And I don't know why doctors aregiving legal advice.
I wouldn't take my stock tipsfrom my mechanic, so why am I
getting legal advice from mydoctor?
And so it's not just kind ofgetting good information about
alternatives out there, but alsopushing back against and
(14:04):
correcting. You know, themisinformation out there about
what guardianship does and doesnot do. And Jordan is absolutely
right, that guardianship,depending on your state can
affect your right to vote. Andgiven Jordan's you know, hobby
of hunting, it can also affectyour right to access firearms.
(14:28):
And so there's a lot oframifications that people might
not be aware of when they golooking for guardianship and
they might be doing it based onnot a lot of information. So I
think, you know, we got we gotto do two things. We got to wise
up about alternatives and likeJordan said, get that
(14:48):
information into the hands offolks. So one really good
resource that the Center forYouth Voice Youth Choice has put
together is a state profile ofall 50 states and the District
of Columbia of the alternativesto guardianship that are
available in their state. It'savailable on the website:
(15:08):
youth-choice.org.
And just making that informationavailable all in one place,
because there's a little bit ofdifference from state to state
about what certain alternativesdo and don't do. But the other
big thing, which is sometimesharder, because a lie will get
around the world faster than orin the time that it takes for
(15:32):
the truth to lace up its shoes,kind of countering
misinformation andmisconceptions about what
guardianship is, for a lot offolks, it's, it makes sense to
them, that they would continueto have a very important and
prominent role in their child'sadult decision making. And so
(15:57):
from, you know, kind of acaregiving protective
perspective makes a lot ofsense, oh, yeah, I will, you
know, go to the court and getthe permission and fill out the
form, lots of families have tofill out a lot of forms, in
order to get the don't make awhole lot of sense all the time,
in order to get the things thatyou know, their loved one needs
(16:20):
and wants. And so when folkshave been conditioned through
most of the special educationand accessing benefits, and that
all those navigating all thosesystems to fill out forms, kind
of the message that you need toget guardianship in order to do
these things, you know, makessense, on some level, and lots
(16:44):
of times they're not given thesame amount of information or
quality information aboutalternatives. And so there's
kind of this two front, youknow, battle, right, not just
pushing good information aboutalternatives out there, but also
countering that informationabout guardianship that you
know, people are using to makedecisions that have long term
(17:07):
consequences.
Lani Jennings-Hall (17:09):
I think you hit like, the nail on the head,
people have absolutely been justlike, put in this mindset of Oh,
yeah, here's the this, this justseems like the the next step of
what is expected, just afterafter years and years of just
forms. And I've heard I've heardmany times in like, just this
just the education world of,it's just, it's a caregiving
(17:31):
thing, it's the next step. And alittle bit of time, I have been
in this world of hearing thesethings.
Tom Masseau (17:38):
And I'm so glad you brought that up. Lani and Hezzy.
And especially Jordan, thecompetency issue is something
that we experienced, we see alot of here in Arkansas, and
it's just a perception, youknow, if you have a disability,
you must be incompetent. Or youmight not, you must not be able
to make your own decisions. Andthat when you get to the age of
(17:59):
18, it's just so common here inArkansas, that, you know,
guardianship is to, you know,putting on a pair of shoes or
whatever. I mean, it's justlike, you get to that age, and
boom, there you go. So trying tobreak that myth and Jordan, I'm
glad you touched on thecompetency piece. And, and, and
just having that conversationwith somebody about your
(18:19):
interest, but you want to doreally brings a different
perspective to it. And it's notone that we in Arkansas, see a
lot of, it's just boom, youknow, you're getting 18 You go
right to court, without havingthat conversation with the
individual of like, okay, sowhat are your hopes and dreams?
What do you want to accomplish?
Do you like to hunt? Do you liketo vote? Because here in
(18:40):
Arkansas, you know, since 2001,if you have a guardian, you can
vote. So we're we're literallystripping the rights away of
individuals with disabilitieswho want to be in the community
want to participate, but becauseof that perception, it just
doesn't happen. So we have a lotof work to do here in Arkansas
to get people to have begunhaving those conversations with
(19:01):
with individuals about it. Whatdo you think that we can do here
in Arkansas? Jordan, I knowyou've done a lot of policy
work, and you testified inwithin Congress and different
things. So what can we replicatehere? What can we do here in
Arkansas, to get people tochange their minds about
guardianship and alternatives toguardianship?
Jordan Anderson (19:23):
Well, thanks for the question, Tom. That's
kind of a loaded question, butI'll try to put it in simple
terms. Well, first I don't knowwhat your setup is, but the
Wisconsin developed a Wisconsinboard for developmental and
(19:49):
physical disabilities. It, is,has very strong base with the
legislative community and theparticularly the Wisconsin
Public Schools, the DPI. So wedo a ton of work in our schools
(20:15):
in trying to get the word out.
Some schools don't necessarilyfollow through, like some
schools, but it's worth, worth atry.
And you just have to build,build, keep building and have
outstanding advocates, like me,and several others, across the
(20:43):
US that are passionate aboutthings and want to make change
for the better. So I just, Ireally, hope I answered that
question. Okay. But, um, I justreally feel like, it really
(21:04):
takes time because Wisconsin'slaw, I believe we had a law in
2013. So if any, somebody hadwanted to do supported decision
making, it's really hard toreverse, like, supported
(21:28):
decision making thing, once youare determined by the court,
that you are under guardianship.
And I just really wanted tostress that we're kind of in the
same predicament for those whoreally want to.
(21:49):
That's my next task, or nexttour to talk to somebody how we
can repeal that, because I knowa lot of friends that, like in
Wisconsin that didn't get thesame information I did. And I
just feel tremendously bad aboutthat. Because the just at the
(22:14):
same level, as I did, so I'mjust fortunate every single day
to carry on this work.
Hezzy Smith (22:23):
Yeah, and I will just follow up on Jordan's, you
know, suggestions about, youknow, access to information. And
one of the really unique thingsabout Wisconsin supported
decision making law is that itdoes require the Department of
Public Instruction to provideinformation about alternatives
to guardianship, to parents andstudents, as part of the
(22:46):
transfer of rights process,which happens when the special
education students reach the ageof majority and continue to have
individualized educationprograms under the Individuals
with Disabilities Education Act.
And that's really important thataccess to information piece, I
would just add to that, that,and this is I think, you know,
(23:06):
one of the big value ads of theCenter for Youth choice and
Youth Voice is that, you know,who are we giving that
information to.
A lot of times when we talkabout making sure people are
informed, the emphasis is kindof on parents. And, you know,
(23:27):
while they are importantstakeholders, and while a lot of
times they are the initiators ofguardianship petitions in court,
so it's good to, you know, dosome information, sharing with
them, at the same time, whoselife is affected, it's the
person with disability. And so,I think it's very, very
(23:52):
important that whateverinformation sharing happens that
it also really targets andprioritizes getting good and
easy to understand informationinto the hands of people with
disabilities who might be partof a guardianship proceeding.
(24:12):
And, in anticipation of that,just keeping them informed about
what it means to make decisionsas an adult here, your options,
you can use none of them, youcan use any one of them. Because
at the end of the day, you know,if as a society, we have these
questions about you know, theboogeyman of competence, who's
(24:34):
competent, who's not, which isthe wrong question to be asking
in the first place.
You know, we should be doing alittle bit more to, you know,
put people in a position to makeinformed choices about how
they'd like to make decisions asan adult, rather than, you know,
creating two boxes and trying toyou know, sort people out and
(24:55):
put them into one box and intoanother which is, you know, it's
a fiction.
And I think, you know, what I'veseen in terms of policy is a
little bit less of an emphasison what self advocates want,
from states' efforts to adoptpolicies or laws on supported
(25:16):
decision making. And a littlemore about what, you know, well
intentioned service providers,what well intentioned attorneys
like myself, or family membersmight want from those policies
and programs. And so I thinkit's really, really important
for anyone who's thinking aboutdoing some doing some good in
(25:38):
this space, is instead ofrunning to your legislator, get
a group, find your local selfadvocacy group and your
statewide self advocacy group,what have you, make sure they're
really educated about whatsupported decision making is
what other states are doing.
Have a study group so thatthey're informed, and that they
(26:00):
can kind of develop their ownpolicy platform and come to
their own conclusions about whattheir legislators and
policymakers in their stateshould be doing. And, you know,
I think, you know, from anobjective perspective, some of
the stuff that Wisconsin hasdone is probably going to make a
really big impact. And it'sprobably going to make a lot of
(26:21):
positive changes in a lot ofpeople's lives. But from a
process perspective, I think wereally need to, as a community,
be a little bit more thoughtfulabout what role are self
advocacy organizations playingin defining the alternatives to
guardianship and supporteddecision making systemic change
(26:44):
agenda.
And so that's something I thinkthat this the Center for Youth
Voice Youth Choice is reallyinvesting in educating youth,
especially with disabilities, sothat they are part of these
conversations. But also, I thinkall of these organizations and
everybody listening to thispodcast should really be
thinking,in my state, whateversupported decision making or
(27:07):
alternatives to guardianshipadvocacy is happening. Is it
self advocacy organization led?
Or is it led by otherorganizations? Even if there are
one or two self advocates thatare part of a coalition? Is this
led by self advocacyorganizations? Because at the
end of the day, you know,nothing about us without us
(27:29):
should also apply to, you know,these changes that are coming
down the pike?.
Lani Jennings-Hall (27:34):
No, I think that's that's a fantastic,
fantastic point as Jordan, doyou have something to add?
Jordan Anderson (27:39):
Yes. If I could just add quickly. Our Governor,
this is related to guardianship.
But our governor recently signeda bill, I think it was last
summer here in Wisconsin, thatis requiring anybody that's
(28:01):
pursuing guardianship, that theyhave this specific training, and
like, they look at otheralternatives first, so that's
another caveat. For people thatare automatically most judges,
(28:23):
some judges would want to justpush guardianship right away.
And that's gonna help us here inWisconsin.
Lani Jennings-Hall (28:37):
I also wanted to add on the on Hass
point about the self advocacygroups. Tom, did you want to
talk a little bit about ArkansasAlliance for Disability Advocacy
group here at Disability RightsArkansas?
Tom Masseau (28:51):
Yeah, so the one of the things that we're doing here
in Arkansas, we were funded bythe Arkansas Governor's Council
on Developmental Disabilities tobring together and form a
project called as Lanimentioned, Arkansas Alliance for
Disability Advocates. And theirwhole focus is to educate and
empower individuals withdisabilities on issues they face
(29:13):
every day. So really looking atbringing people together and
kind of bridging those gaps,whether it's the whether it's
looking at forming self advocacygroups in the community, looking
at high school age youth up topost secondary, to really
educate people about theirrights, and how to reclaim their
(29:33):
voice. Because everybody has avoice. It's just some people's
voices is not heard. So we'rereally we're really working in
supporting self advocates acrossthe state and getting them to
reclaim that and to take a standand take their space and say,
you know, this is this is anissue that's important to us.
So the AADA program is going tobe key in pushing some of these
(29:57):
issues forward here in Arkansasand also reaching out to, you
know, Wisconsin and talking tothe Wisconsin self advocates to
say, what can we do in Arkansasto help support self advocates
and get people more engaged insome of these conversations that
that, you know, need to be hadthat's not happening here in the
state? We're slowly buildingthose bridges going forward.
Lani Jennings-Hall (30:20):
All right, final question to either or, or
both, whichever. What advice doyou guys have for advocates
trying to talk to theirlegislators, and even family
members that are trying tocreate this change?
Hezzy Smith (30:34):
So my advice is not necessarily to go running your
legislators. There are somedifferent examples of what some
different states are doing withregard to changes to promote
alternatives to guardianship.
Some of the laws are better thanothers. Ironically, even though
(30:55):
a lot of the disability rightscommunity has been concerned
about the lack of data. Withregard to guardianship, we don't
necessarily have a lot of dataon which kinds of supported
decision making or other reformsare most impactful.
(31:17):
And so I think, in reallyimportant ways, and this is not
to throw throw water, cold wateron anybody's advocacy efforts,
but to really think about whatare the changes that you would
like to see? What policies andpractices need to change in
(31:39):
order for those changes toactually happen, and then, who
do you need to talk to in orderto get those changes made,
because I think it would beunfortunate if, you know, there
was everyone running arounddoing a copy and paste of, you
know, so and so state's law,because often, the first is not
(32:03):
the best, the first crack is notalways the best one.
And so I think this is actuallyan interesting time to for
advocates, whether they're selfadvocates, or whether they're
allies, to do some research, dosome soul searching, look around
and try to learn, because onceyou get your supported decision
(32:25):
making law say, it's gonna be awhile, if there's something
wrong with it to a legislator isgoing to pay enough attention to
you to want to go back andchange it. And so kind of pick
and stick and do your research,before you make a pick, because,
um, you know, some of thelegislation, some of the reforms
(32:47):
that have been happening, havebeen on the basis of data and
experience through pilotprograms that, you know, provide
a blueprint or, you know, somesort of proof of concept before,
you know, the law or policiesare changed. And in other
places, that hasn't been thecase. And so, and I would say,
(33:10):
it's also, you know, one otherreason to not necessarily go run
to legislature a legislator, isthat there's a lot that you can
learn about the kinds of changesyou want to see by practicing
around your kitchen table.
As Eleanor Roosevelt said, youknow, human rights start at
(33:32):
home. And, you know, you don'tneed a law, in order to develop
whatever tools you think youmight need to get people
trained, in order to whateverchanges come, you know, breathe
some good life into them,because at the end of the day,
(33:54):
laws are pieces of paper. And,you know, would you rather have
a good law and not so goodpeople implementing it? Or would
you rather have a bad law andgood people, really, you know,
working hard to make the most ofthat bad law. I think I would
prefer the latter in most cases.
And so kind of building thosecoalitions, getting people
(34:16):
together, and making sure thatyou got a solid base, and a
solid understanding of what kindof changes you want to happen
and to be really strategic aboutit. Because, you know, this
isn't kind of like guardianship,you know, going for systemic
reforms. You can't start+select, I'm dating myself with
that reference, but you can'tjust hit undo. If you you know,
(34:39):
sign yourself up for somethingthat, you know, you kind of
regret later. And just onecautionary tale, I think is, you
know, the mixed or unevenexperience of folks with person
centered planning. It's a greatidea. It's a great concept.
How many places have good lawsthat are followed is, I think, a
(35:03):
really open question. And, youknow, one, I think concern that
everyone should be thinkingabout. And this was told to me
by the President of the SelfAdvocacy Association of New York
State, Tony Phillips, is that henever wants supported decision
making to become just anotherprogram, in his words. And so
(35:26):
how do we prevent supporteddecision making from, you know,
for example, becoming justanother Medicaid reimbursed
service. And we want people tobe supported to do support and
decision making and explore allthe options out there. But what
(35:46):
kind of guardrails and firewallsdo we need in place to make sure
that, you know, the promise ofthese developments doesn't get
lost in the shuffle when itcomes time for things to be
implemented that a large scale?
So I would just kind of sayingsome words of caution, you know,
learn about what reforms youwant form alliances and good
(36:07):
networks, and then maybe thinkabout, you know, second
generation problems that mightarise once you get what you
think you're looking for?
Lani Jennings-Hall (36:20):
Jordan, what would you like to add to that?
Jordan Anderson (36:22):
So I agree 100%, with Hezzy. And I just
want to just briefly touch onone or two points. I just, like
Hezzy said, don't necessarily gorun to legislators unless its
(36:45):
the last option possible,because once you go to your
legislator, like, I've beentrying to get ahold of my
legislators for the past, like,how many months and I'm finally
getting to meet with them, like,in a couple of weeks. So they're
(37:05):
really busy. And you better havesome concrete issues, that if
you want to bring up to thembefore you go, because they're
really busy. I know they'revoted in, but I guess, touch on
that. And, also, just keepspreading the word about
(37:31):
alternatives to guardianship.
Just, like I said before, andmultiple times, a guadianship
isn't for everybody. But if wehave people making their own
choices that are disabled, Ifeel much better, because people
with disabilities are just likeeverybody else.
(37:56):
So I really strongly push forpeople, if they're capable, you
know, make the choices that willbetter themselves, I say, go
ahead and pursue alternatives toguardianship. And once again, if
(38:19):
you are interested, to learnmore about the project, please
reach out to the podcast creatorand they will give you our
contact information. And I wouldlove to collaborate with you.
(38:40):
And if you have any questions, Iwill be happy to answer them.
And I'm just happy and honoredto be here because I have a very
powerful story. And I'm tryingto change one person's mind at
least, and making them aware ofalternatives going cheap, not
(39:06):
just the 11th hour and I wasthis close to not getting my
rights that I was able to haveright now. If I didn't go to
that conference, and stuff likethat, that's why I'm on so many
disability boards, and so manyother things in that why I'm
(39:28):
just having that you guys gaveme this opportunity to speak
with you guys today becausealternatives to guardianship are
very unique them. And not manypeople in the disability world
are elderly. People know butthey know if somebody's been
(39:50):
affected by it. So one at atime. We're going to make people
aware of it. Thank you and Ihope you enjoy this podcast.
Lani Jennings-Hall (40:02):
Thank you, Jordan, Hezzy, and Tom for
joining me today. And Jordan,thank you for sharing your self
advocacy journey. Make sure tocheck out the show notes for
additional links and resourcesfrom today's show. At DRA, we
envision an Arkansas wherepeople with disabilities are
equal members in theircommunities and can dictate
their lives through selfdetermination. And as made clear
(40:24):
in today's episode, we can'tcreate that change without
bringing self advocates to thetable. If you're interested in
more information, make sure tosubscribe to this podcast and
visit our website.
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