July 30, 2021 • 20 mins
Today we are talking about a program that is an important lifeline for people with disabilities, but it simply doesn’t work very well. In fact, this program prevents people from getting married, discourages them from working, and even prevents them from accepting help from family members.
There are 1,275,932 recipients of Supplemental Security Income (or SSI) in Wisconsin. SSI provides help to many of the lowest income Social Security beneficiaries who are also disproportionately people of color.
Today's guests are experts on SSI policy with two different perspectives and many ideas on what needs to be fixed in SSI.
Bethany Lilly is the Director of Income Policy at The Arc where she specializes in public policy related to Social Security, income supports, paid leave, and poverty. She joined The Arc in 2019 after six years at the Bazelon Center for Mental Health Law, where she worked on public policy impacting people with mental health disabilities. She also was a former was a law clerk with the U.S. Senate Committee on Health, Education, Labor, and Pensions in Congress.
Jason Endres is president of People First Wisconsin, the state’s largest self-advocacy organization, Chair of the state’s Independent Living Council and a graduate of partners in policymaking. He lives in Eau Claire his wife Julie and his service dogs Bucky and Pinky.
More resources on SSI and the proposed changes discussed in this episode:
Easy SSI Action Alert: https://p2a.co/IAFTwCz
Find your Member of Congress: https://www.congress.gov/members/find-your-member
Letter from the Consortium for Citizens with Disabilities: http://c-c-d.org/fichiers/CCD-SSI-Letter_5-20-21.pdf
Letter from Members of Congress in Support of SSI Reform: https://bowman.house.gov/_cache/files/b/a/baebc065-38c0-45cd-bcfd-eaedad4c228d/2E60F47C388560A6676B9F80C9B0D938.ssi-letter-final.pdf
SSI Background: https://disabilitypolicyseminar.org/wp-content/uploads/2021/04/Social-Security-Fact-Sheet.pdf
SSI Reforms Talking Points: https://disabilitypolicyseminar.org/wp-content/uploads/2021/04/Social-Security-Talking-Points-.docx
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:05):
Welcome to the arc experience, featuring the
stories of self advocates withdisabilities and their families
from around Wisconsin.
Be inspired.
Take action.
And now for today's episode,
Speaker 2 (00:22):
Welcome to the arc experience podcast.
I am your host, Lisa pew.
And today we are talking withsome experts about our program.
That is an important lifelinefor people with disabilities.
It's been around for a reallylong time and it doesn't work
very well.
Go figure.
In fact, this program won't letpeople get married.
(00:44):
Sometimes it prevents them fromworking and it has a lot of
other outdated features thatreally just have to go.
So today's conversation is aboutfixing it.
We are joined by two experts whohave lots of ideas and also
ideas for things you can do.
So welcome to my guests,Bethany, Lily, and Jason, and
dress.
Hello guys.
(01:05):
Hello.
Hey, so just so you guys know alittle bit about Bethany and
Jason Bethany, Lily is thedirector of income policy at the
arc of the United States.
That's where I work and shespecializes in public policy
related to social security,income supports, paid leave and
poverty.
She joined the arc in 2019.
Um, she used to work at thebassline center for mental
(01:27):
health law, and also formerlywas a law clerk with the us
Senate committee on healtheducation, labor and pension.
So she's a very importantperson.
And then our friend, JasonAndrus, some of you Wisconsin
listeners might know he's also aVIP in Wisconsin.
He's president of people, first,Wisconsin, the state's largest
(01:48):
self-advocacy organization.
He's also chair of the state'sindependent living council and a
graduate of partners inpolicymaking.
Probably most importantly, helives in O'Claire with his wife,
Julie and his two service dogs,Bucky and pinky.
So, Hey, let's get going guys.
Uh, w the, the program thatwe're talking about Bethany is
SSI, or, um, the law name, whatsupplemental security income,
(02:12):
right?
Most people don't call it that,but then you could, you guess,
give us a, like a little historyand tell us what this program is
supposed to be doing.
Speaker 3 (02:21):
Sure.
So this program was passed backin 1972, so a very, very long
time ago during the presidencyof Richard Nixon.
So long before I was born.
Um, but, uh, the program wasdesigned as the actual full name
describes to supplement socialsecurity income.
So if folks weren't eligible forsocial security, for one reason
(02:44):
or another, they would getenough money to live on and not
be forced to live in poverty,unfortunately, um, because we
haven't updated the program overthe years, that's not really
what it does anymore.
Right now, benefits in theprogram, 75% of the federal
poverty line, which means peopleonly get at a maximum, just
(03:05):
under$800 a month to live on.
And that's incredibly,incredibly difficult to do, but
the goal of this programinitially, and what we'd like it
to do now is help the lowestincome people with disabilities
and older adults who aren'teligible for social security
have full and productive liveswith the support they need and
(03:26):
the money they need to rent anapartment or a pay for
groceries, things thathealthcare services via Medicaid
don't pay for.
Speaker 2 (03:36):
Perfect, perfect explanation of a complicated
program.
Jason, I know that SSI issomething that you rely on you
and your family and other peoplewith disabilities, certainly in
Wisconsin.
Can you tell us like how ithelps you and why you need that
in your life?
Speaker 4 (03:57):
Uh, both me and my wife are, are on SSI.
And, um, when we got marriedback in 1996, a few months
before that, we went to ourlocal social security office to
(04:20):
let them know that I've alreadyintentioned in the area.
And we, we asked, uh, you know,what kind of, were there any
kind of, um, I don't, these arenot to getting married.
And they said yes, that you grewup probably be, uh, getting
(04:41):
pretty close to half of yourincome, because both you and
your year wife are, uh,disabled.
And we were both kindaflabbergasted.
And they, they told us that weprobably should just live in sin
and not getting married and, uh,just lived together.
(05:06):
And that was really against bothof our, uh, our, our beliefs in
religion that, you know, nomatter what was gonna happen to
us, we were going to try andfigure it out.
And we did, uh, you know, we arestill struggling like everybody
(05:28):
else out there.
Um, it's I had a job when killedabout 10 years ago, rare.
I was, uh, being scrutinizedevery so often about, uh, how
much I was making and how much Iwas working and what I had for
(05:50):
assets.
Um, both me and my wife.
We, uh, can only have up to$3,000 in assets.
So that was really, reallydifficult.
And I just got tired of fightingthe system and I had a swallow
(06:12):
swallow, my pride and just, uh,go back on the system.
Speaker 2 (06:19):
And I'm assuming that, that, that monthly income,
even though it isn't as much asit should be, like Bethany said
that it hasn't kept up with thecost of living today is still
something that's reallyimportant to you.
What do you use that payment forreuse
Speaker 4 (06:36):
It to, uh, uh, in, uh , buy some groceries, pay for
rent or in our case mortgage,it's just, uh, it's really
difficult for a person that hasa disability that is on as a
side to make a living with,without being stressed about
(07:02):
what bills aren't going to paythis month.
You know, and it's like Bethanysaid back in 72, it was a modest
, uh, uh, raped by it hasn'tbeen in the past, or it hasn't
been, I changed in many yearsand it's really out of date.
Speaker 2 (07:28):
Yeah.
Bethany, I'm sure you hear allthe time from people with
disabilities across the countryabout the same things that Jason
is talking about and how itimpacts his life and really
limits him in a lot of ways.
What are the reforms that youwould like Congress to make?
Because it does require Congressto make some pretty big changes
(07:48):
to the law, right?
Speaker 3 (07:50):
Yup.
So SSI is a federal program,which means that in order for
things to change in it, Congresshas to do something so states
can make a few things and somestates actually add more money
on top of SSI to help people outwho are on SSI, but really to
make changes, to address thethings that Jason was talking
(08:11):
about, penalties for people whoget married, um, the asset
limits being so, so low,increasing the benefit level,
all of those things wouldrequire Congress to change them.
And that's what we've beenworking on at the national arc.
We've been working on makingsure that marriage penalties get
eliminated, that the benefitsare increased.
(08:34):
Um, we'd like them to beincreased substantially because
we know that people have troublepaying for rent and groceries.
We'd like to see the assetlimits increased.
I I'd be in favor of getting theasset limits completely
eliminated.
That's what we've chosen to doin some programs.
Um, but even just an increase tosomething that's a lot like
(08:55):
today's money rather than moneyback in 1984, which is the last
time Congress took a look at theasset limits would be great.
Um, and then we also have acouple of other rules that we're
taking a look at.
One of them is around gettinghelp from families.
So there are really strictrules.
If you have family members whowant to help out with helping
(09:16):
you pay your rent or yourmortgage or helping you buy
groceries, these are calledin-kind support maintenance
rules.
It sounds really complicated,but basically what it means is
if you get help from yourfamily, your benefits will get
cut.
And that just doesn't makesense.
If you need, you know, some helpwith groceries one month, or,
(09:38):
you know, you need a coupleextra hundred dollars for the
rent.
That's something that yourfamily and friends should be
able to help out with.
We saw a lot of that help duringthe pandemic, but people on SSI
couldn't take advantage of thatbecause they could've gotten
their benefits cut.
And so we'd really like to seethose rules changed.
And then finally, there are alsorules that get to Jason's
(09:59):
concerns about work.
SSI benefits right now aretapered off.
So if you start making over acertain amount of money, you
lose 50 cents for every dollaryou make.
And that's not a very good workincentive.
So we'd like to see thatincrease, but we also think that
there are some fundamentalelements of the program around
(10:20):
how social security takes intoaccount money.
You make that also need to belooked at those haven't been
updated since the program wasfounded.
So, uh, one of them, forinstance, I'll give you an
example.
There is a$65 exclusion for anymoney you make.
So$65 back in, in 1972 was a lotof money, but today that is not
(10:43):
a lot of money, um, that canprobably fill up your gas tank
or maybe help out with, youknow, your internet bill or your
cable bill every month.
But that's not going to cover alot right now.
And so if we had adjusted thatfor inflation, it would be over
$400 right now.
And I think that would reallyhelp people incentivize get
(11:05):
incentivized to go back to workbecause they have more of a
flexible, you know, I don't haveto be counting.
Absolutely.
Every penny I can go to work, Ican see how work is for me.
And so those are some of thechanges where we're advocating
for right now up in Congress.
Speaker 2 (11:20):
That's a lot of changes, Bethany.
I mean, I guess when a program'sthat old, the list gets pretty
long, right?
Speaker 3 (11:28):
That is true.
And I could actually listenanother seven or eight changes.
We would like to see it as, um,but I'll keep it to that, those
ones.
Hey,
Speaker 2 (11:39):
Jason, why, you know, hearing what Bethany says are,
are some of the big reforms, whyare those important to you?
How would that make a differencein your life?
Speaker 4 (11:51):
Then layers penalty would be a big one.
We would, you know, just me andmy wife would get, uh, uh, twice
as much as we're getting now inour, uh, SSI, uh, the asset
limits, you know, adding morethan$3,000 in our, our bank
(12:12):
accounts.
And, you know, I would love toget back out there and work and,
um, show my ability to repeatball, uh, that I can, uh, work
and that I'm an asset towherever I work.
And that is the case with somany self advocates in, uh, in,
(12:36):
in the country, they don't wantto work.
Uh, there are some that arework, aren't working and a lot
more of these days.
And, you know, statistic hasshown that once a person with a
disability starts a job, they'regonna stay with that job until
(12:57):
either, uh, the place the placecloses down or, uh, the person
with the disability retires.
So they're, they're there for avery long, a very long time
night.
I just don't understand whyCongress doesn't see these,
these as, uh, um, great goals.
Speaker 2 (13:21):
Really.
It sounds like what we're askingfor is pretty common sense that
could, you know, you know,getting more people with
disabilities into the workforceby eliminating those work
disincentives.
I mean, that's kind of what weneed now in our economy is more
people willing to work.
So it, you know, it really iskind of confusing why we can't
(13:44):
find more allies.
Bethany, can you talk a littlebit about what's happening in
Congress now and whether or notyou see some traction for these
issues in this conversation?
Speaker 3 (13:55):
Sure.
So Congress right now isthinking about how can they help
recovery after the pandemic?
So we had, we've spent the pastyear and a half going through
the pandemic and it has beenreally, really hard for people.
And as we're coming out of thepandemic, people need help.
And so they are thinking abouthow to help people.
(14:16):
And one of the things they'rethinking about is around some
SSI changes, um, the bigpackage, and you may hear people
use a pretty complicated word todescribe it, budget
reconciliation.
I didn't know what this wordmeant a couple of years ago and
I had to learn.
So, um, but I, that was a prettyeasy way to explain it is it's
just a budget bill, but it hasspecial rules in the Senate,
(14:39):
which means you only need 50votes for it.
So the Democrats in the houseand the Senate are currently
talking about a budget bill thatthey could pass.
And so they're thinking aboutimprovements that the disability
service system needs likeincreasing access to home and
community-based services andreducing wait lists, but they
(14:59):
also know that SSI is important.
And we got a big letter a coupleof months ago from 18 senators.
I was really, really excited tosee that many senators
interested and caring about SSI.
Um, that went up to the whitehouse saying we should really do
something about SSI and we'veseen more things come out on
that.
Just a couple of a bit ago, wehad a Facebook live event with
(15:24):
representative Jamaal Bowmanfrom New York and representative
Ayana Presley from Massachusettswho wanted to talk about how
important SSI was for them.
So we've really been seeingCongress for the first time in a
long time, interested in SSI andwanting to do something about
SSI.
So I am really more optimisticthan I thought I would be at the
(15:46):
beginning of this year aboutmaybe seeing some SSI changes.
Um, so fingers crossed.
That's
Speaker 2 (15:54):
Really exciting.
I'm sure, you know, Jason, I'msure for you thinking about the
ability to save more money, um,to be able to save for
improvements to your home.
I know you mentioned you're ahomeowner and you know, I can't
even imagine for people withdisabilities a couple like you
and you're right.
Julie thinking about retirement,but being so limited in the
(16:17):
amount of money you can save.
That's just gotta be a littlebit scary.
I would think
Speaker 4 (16:24):
It is.
Um, you know, you're, you're,you're wondering, you know,
where your, your next meal iscoming quite quite a bit.
And, you know, we're brought inour, in our, uh, upper forties
and a retirement is, is, uh,coming up there and, you know,
(16:46):
we really don't have a nest egg,uh, and there's really no way of
having a nest egg because, uh,you know, our, our SSI check
goes right out the door, youknow, matter a day or two year
because we're paying for foodranked in, um, necessities that
(17:13):
we need to have to, to live.
Speaker 2 (17:18):
Yeah.
So Bethany, we need to get thesereforms moved through from
people like Jason.
So what, what advice do you havefor our advocates in Wisconsin
and across the country about howwe can help tell this story and
to find more friends in Congresson these changes.
Speaker 3 (17:37):
I think you hit on it directly.
Lisa, tell your story.
If you know your member ofCongress.
I know a lot of self advocatesare really have met their
members of Congress and knowtheir members of Congress pretty
well.
And if you haven't talked tothem about SSI before, talk to
them about SSI, talk about whyit would be important for these
changes to happen.
(17:58):
I mean, I tell stories likeJason's to memo, to staff on
Capitol hill a lot, but there'snothing like hearing from a
person who's going through theexperience right now.
Um, and I think that can reallymake a difference and it can
build champions.
I think that's why many of thechampions we have care so much
about this issue is they, theyknow people who are going
(18:20):
through that trouble and theywant to help.
So tell your story and reach outto your member of Congress.
The national arc has an actionalert that is on our website.
If you go to the arc.orgbackslash action, you can find
an action alert that will letyou talk about HTPs.
It will let you talk about SSI.
You can also talk about paidfamily leave.
(18:42):
If your family caregivers arerunning into problems with that.
And so that's always there.
You can always use that.
It'll help you identify who yourmembers of Congress are.
And I'm sure that if you hadother questions and you wanted
to do some outreach, you couldwork, reach out to your local
arc and they could help youfigure out how to do that.
Speaker 2 (19:02):
So you meet with people on Capitol hill, Bethany,
um, and you would suggest wedon't have to come to Washington
to advocate.
We can.
I know that, um, Jason, youknow, your Congressman, Ron kind
who's in the O'Claire area.
And a lot of those people havehome offices and they do have
visits right within people'shome towns.
(19:23):
Right?
Speaker 3 (19:24):
Yup.
And if you need help findingthose places, I'm sure your
local art could help youidentify who to go talk to.
Okay.
Speaker 2 (19:32):
All right.
Any, any final words, Jason,what do you want to say to other
advocates who are interested inhexane SSI?
Speaker 4 (19:41):
Uh, uh, your, your, uh, congressmen is it, doesn't
read her, look in her.
Don't regret Kelly, your story.
Tell your story, tell your storyby the oldest.
[inaudible].
Speaker 2 (20:01):
That is a perfect statement to end on.
I want to thank you, Bethany andJason for talking about this
important issue today.
Thank you, Tara listeners forlistening to the arc experience
podcast, please be sure to likeshare and subscribe and we'll
talk to you next time.
Speaker 1 (20:18):
Today's episode of the Ark experience was brought
to you by the arc Wisconsin, thestate's oldest advocacy
organization for people withintellectual developmental
disabilities and their familiesit's funded in part by the
Wisconsin board for people withdevelopmental disabilities.
Our theme music called speciesis the property of[inaudible]
(20:40):
and cannot be copied ordistributed without permission.
It was produced by EleanorCheetham, composer and artist
with autism.
Welcome to the arc experience, featuring the
stories of self advocates withdisabilities and their families
from around Wisconsin.
Be inspired.
Take action.
And now for today's episode,
Speaker 2 (00:22):
Welcome to the arc experience podcast.
I am your host, Lisa pew.
And today we are talking withsome experts about our program.
That is an important lifelinefor people with disabilities.
It's been around for a reallylong time and it doesn't work
very well.
Go figure.
In fact, this program won't letpeople get married.
(00:44):
Sometimes it prevents them fromworking and it has a lot of
other outdated features thatreally just have to go.
So today's conversation is aboutfixing it.
We are joined by two experts whohave lots of ideas and also
ideas for things you can do.
So welcome to my guests,Bethany, Lily, and Jason, and
dress.
Hello guys.
(01:05):
Hello.
Hey, so just so you guys know alittle bit about Bethany and
Jason Bethany, Lily is thedirector of income policy at the
arc of the United States.
That's where I work and shespecializes in public policy
related to social security,income supports, paid leave and
poverty.
She joined the arc in 2019.
Um, she used to work at thebassline center for mental
(01:27):
health law, and also formerlywas a law clerk with the us
Senate committee on healtheducation, labor and pension.
So she's a very importantperson.
And then our friend, JasonAndrus, some of you Wisconsin
listeners might know he's also aVIP in Wisconsin.
He's president of people, first,Wisconsin, the state's largest
(01:48):
self-advocacy organization.
He's also chair of the state'sindependent living council and a
graduate of partners inpolicymaking.
Probably most importantly, helives in O'Claire with his wife,
Julie and his two service dogs,Bucky and pinky.
So, Hey, let's get going guys.
Uh, w the, the program thatwe're talking about Bethany is
SSI, or, um, the law name, whatsupplemental security income,
(02:12):
right?
Most people don't call it that,but then you could, you guess,
give us a, like a little historyand tell us what this program is
supposed to be doing.
Speaker 3 (02:21):
Sure.
So this program was passed backin 1972, so a very, very long
time ago during the presidencyof Richard Nixon.
So long before I was born.
Um, but, uh, the program wasdesigned as the actual full name
describes to supplement socialsecurity income.
So if folks weren't eligible forsocial security, for one reason
(02:44):
or another, they would getenough money to live on and not
be forced to live in poverty,unfortunately, um, because we
haven't updated the program overthe years, that's not really
what it does anymore.
Right now, benefits in theprogram, 75% of the federal
poverty line, which means peopleonly get at a maximum, just
(03:05):
under$800 a month to live on.
And that's incredibly,incredibly difficult to do, but
the goal of this programinitially, and what we'd like it
to do now is help the lowestincome people with disabilities
and older adults who aren'teligible for social security
have full and productive liveswith the support they need and
(03:26):
the money they need to rent anapartment or a pay for
groceries, things thathealthcare services via Medicaid
don't pay for.
Speaker 2 (03:36):
Perfect, perfect explanation of a complicated
program.
Jason, I know that SSI issomething that you rely on you
and your family and other peoplewith disabilities, certainly in
Wisconsin.
Can you tell us like how ithelps you and why you need that
in your life?
Speaker 4 (03:57):
Uh, both me and my wife are, are on SSI.
And, um, when we got marriedback in 1996, a few months
before that, we went to ourlocal social security office to
(04:20):
let them know that I've alreadyintentioned in the area.
And we, we asked, uh, you know,what kind of, were there any
kind of, um, I don't, these arenot to getting married.
And they said yes, that you grewup probably be, uh, getting
(04:41):
pretty close to half of yourincome, because both you and
your year wife are, uh,disabled.
And we were both kindaflabbergasted.
And they, they told us that weprobably should just live in sin
and not getting married and, uh,just lived together.
(05:06):
And that was really against bothof our, uh, our, our beliefs in
religion that, you know, nomatter what was gonna happen to
us, we were going to try andfigure it out.
And we did, uh, you know, we arestill struggling like everybody
(05:28):
else out there.
Um, it's I had a job when killedabout 10 years ago, rare.
I was, uh, being scrutinizedevery so often about, uh, how
much I was making and how much Iwas working and what I had for
(05:50):
assets.
Um, both me and my wife.
We, uh, can only have up to$3,000 in assets.
So that was really, reallydifficult.
And I just got tired of fightingthe system and I had a swallow
(06:12):
swallow, my pride and just, uh,go back on the system.
Speaker 2 (06:19):
And I'm assuming that, that, that monthly income,
even though it isn't as much asit should be, like Bethany said
that it hasn't kept up with thecost of living today is still
something that's reallyimportant to you.
What do you use that payment forreuse
Speaker 4 (06:36):
It to, uh, uh, in, uh , buy some groceries, pay for
rent or in our case mortgage,it's just, uh, it's really
difficult for a person that hasa disability that is on as a
side to make a living with,without being stressed about
(07:02):
what bills aren't going to paythis month.
You know, and it's like Bethanysaid back in 72, it was a modest
, uh, uh, raped by it hasn'tbeen in the past, or it hasn't
been, I changed in many yearsand it's really out of date.
Speaker 2 (07:28):
Yeah.
Bethany, I'm sure you hear allthe time from people with
disabilities across the countryabout the same things that Jason
is talking about and how itimpacts his life and really
limits him in a lot of ways.
What are the reforms that youwould like Congress to make?
Because it does require Congressto make some pretty big changes
(07:48):
to the law, right?
Speaker 3 (07:50):
Yup.
So SSI is a federal program,which means that in order for
things to change in it, Congresshas to do something so states
can make a few things and somestates actually add more money
on top of SSI to help people outwho are on SSI, but really to
make changes, to address thethings that Jason was talking
(08:11):
about, penalties for people whoget married, um, the asset
limits being so, so low,increasing the benefit level,
all of those things wouldrequire Congress to change them.
And that's what we've beenworking on at the national arc.
We've been working on makingsure that marriage penalties get
eliminated, that the benefitsare increased.
(08:34):
Um, we'd like them to beincreased substantially because
we know that people have troublepaying for rent and groceries.
We'd like to see the assetlimits increased.
I I'd be in favor of getting theasset limits completely
eliminated.
That's what we've chosen to doin some programs.
Um, but even just an increase tosomething that's a lot like
(08:55):
today's money rather than moneyback in 1984, which is the last
time Congress took a look at theasset limits would be great.
Um, and then we also have acouple of other rules that we're
taking a look at.
One of them is around gettinghelp from families.
So there are really strictrules.
If you have family members whowant to help out with helping
(09:16):
you pay your rent or yourmortgage or helping you buy
groceries, these are calledin-kind support maintenance
rules.
It sounds really complicated,but basically what it means is
if you get help from yourfamily, your benefits will get
cut.
And that just doesn't makesense.
If you need, you know, some helpwith groceries one month, or,
(09:38):
you know, you need a coupleextra hundred dollars for the
rent.
That's something that yourfamily and friends should be
able to help out with.
We saw a lot of that help duringthe pandemic, but people on SSI
couldn't take advantage of thatbecause they could've gotten
their benefits cut.
And so we'd really like to seethose rules changed.
And then finally, there are alsorules that get to Jason's
(09:59):
concerns about work.
SSI benefits right now aretapered off.
So if you start making over acertain amount of money, you
lose 50 cents for every dollaryou make.
And that's not a very good workincentive.
So we'd like to see thatincrease, but we also think that
there are some fundamentalelements of the program around
(10:20):
how social security takes intoaccount money.
You make that also need to belooked at those haven't been
updated since the program wasfounded.
So, uh, one of them, forinstance, I'll give you an
example.
There is a$65 exclusion for anymoney you make.
So$65 back in, in 1972 was a lotof money, but today that is not
(10:43):
a lot of money, um, that canprobably fill up your gas tank
or maybe help out with, youknow, your internet bill or your
cable bill every month.
But that's not going to cover alot right now.
And so if we had adjusted thatfor inflation, it would be over
$400 right now.
And I think that would reallyhelp people incentivize get
(11:05):
incentivized to go back to workbecause they have more of a
flexible, you know, I don't haveto be counting.
Absolutely.
Every penny I can go to work, Ican see how work is for me.
And so those are some of thechanges where we're advocating
for right now up in Congress.
Speaker 2 (11:20):
That's a lot of changes, Bethany.
I mean, I guess when a program'sthat old, the list gets pretty
long, right?
Speaker 3 (11:28):
That is true.
And I could actually listenanother seven or eight changes.
We would like to see it as, um,but I'll keep it to that, those
ones.
Hey,
Speaker 2 (11:39):
Jason, why, you know, hearing what Bethany says are,
are some of the big reforms, whyare those important to you?
How would that make a differencein your life?
Speaker 4 (11:51):
Then layers penalty would be a big one.
We would, you know, just me andmy wife would get, uh, uh, twice
as much as we're getting now inour, uh, SSI, uh, the asset
limits, you know, adding morethan$3,000 in our, our bank
(12:12):
accounts.
And, you know, I would love toget back out there and work and,
um, show my ability to repeatball, uh, that I can, uh, work
and that I'm an asset towherever I work.
And that is the case with somany self advocates in, uh, in,
(12:36):
in the country, they don't wantto work.
Uh, there are some that arework, aren't working and a lot
more of these days.
And, you know, statistic hasshown that once a person with a
disability starts a job, they'regonna stay with that job until
(12:57):
either, uh, the place the placecloses down or, uh, the person
with the disability retires.
So they're, they're there for avery long, a very long time
night.
I just don't understand whyCongress doesn't see these,
these as, uh, um, great goals.
Speaker 2 (13:21):
Really.
It sounds like what we're askingfor is pretty common sense that
could, you know, you know,getting more people with
disabilities into the workforceby eliminating those work
disincentives.
I mean, that's kind of what weneed now in our economy is more
people willing to work.
So it, you know, it really iskind of confusing why we can't
(13:44):
find more allies.
Bethany, can you talk a littlebit about what's happening in
Congress now and whether or notyou see some traction for these
issues in this conversation?
Speaker 3 (13:55):
Sure.
So Congress right now isthinking about how can they help
recovery after the pandemic?
So we had, we've spent the pastyear and a half going through
the pandemic and it has beenreally, really hard for people.
And as we're coming out of thepandemic, people need help.
And so they are thinking abouthow to help people.
(14:16):
And one of the things they'rethinking about is around some
SSI changes, um, the bigpackage, and you may hear people
use a pretty complicated word todescribe it, budget
reconciliation.
I didn't know what this wordmeant a couple of years ago and
I had to learn.
So, um, but I, that was a prettyeasy way to explain it is it's
just a budget bill, but it hasspecial rules in the Senate,
(14:39):
which means you only need 50votes for it.
So the Democrats in the houseand the Senate are currently
talking about a budget bill thatthey could pass.
And so they're thinking aboutimprovements that the disability
service system needs likeincreasing access to home and
community-based services andreducing wait lists, but they
(14:59):
also know that SSI is important.
And we got a big letter a coupleof months ago from 18 senators.
I was really, really excited tosee that many senators
interested and caring about SSI.
Um, that went up to the whitehouse saying we should really do
something about SSI and we'veseen more things come out on
that.
Just a couple of a bit ago, wehad a Facebook live event with
(15:24):
representative Jamaal Bowmanfrom New York and representative
Ayana Presley from Massachusettswho wanted to talk about how
important SSI was for them.
So we've really been seeingCongress for the first time in a
long time, interested in SSI andwanting to do something about
SSI.
So I am really more optimisticthan I thought I would be at the
(15:46):
beginning of this year aboutmaybe seeing some SSI changes.
Um, so fingers crossed.
That's
Speaker 2 (15:54):
Really exciting.
I'm sure, you know, Jason, I'msure for you thinking about the
ability to save more money, um,to be able to save for
improvements to your home.
I know you mentioned you're ahomeowner and you know, I can't
even imagine for people withdisabilities a couple like you
and you're right.
Julie thinking about retirement,but being so limited in the
(16:17):
amount of money you can save.
That's just gotta be a littlebit scary.
I would think
Speaker 4 (16:24):
It is.
Um, you know, you're, you're,you're wondering, you know,
where your, your next meal iscoming quite quite a bit.
And, you know, we're brought inour, in our, uh, upper forties
and a retirement is, is, uh,coming up there and, you know,
(16:46):
we really don't have a nest egg,uh, and there's really no way of
having a nest egg because, uh,you know, our, our SSI check
goes right out the door, youknow, matter a day or two year
because we're paying for foodranked in, um, necessities that
(17:13):
we need to have to, to live.
Speaker 2 (17:18):
Yeah.
So Bethany, we need to get thesereforms moved through from
people like Jason.
So what, what advice do you havefor our advocates in Wisconsin
and across the country about howwe can help tell this story and
to find more friends in Congresson these changes.
Speaker 3 (17:37):
I think you hit on it directly.
Lisa, tell your story.
If you know your member ofCongress.
I know a lot of self advocatesare really have met their
members of Congress and knowtheir members of Congress pretty
well.
And if you haven't talked tothem about SSI before, talk to
them about SSI, talk about whyit would be important for these
changes to happen.
(17:58):
I mean, I tell stories likeJason's to memo, to staff on
Capitol hill a lot, but there'snothing like hearing from a
person who's going through theexperience right now.
Um, and I think that can reallymake a difference and it can
build champions.
I think that's why many of thechampions we have care so much
about this issue is they, theyknow people who are going
(18:20):
through that trouble and theywant to help.
So tell your story and reach outto your member of Congress.
The national arc has an actionalert that is on our website.
If you go to the arc.orgbackslash action, you can find
an action alert that will letyou talk about HTPs.
It will let you talk about SSI.
You can also talk about paidfamily leave.
(18:42):
If your family caregivers arerunning into problems with that.
And so that's always there.
You can always use that.
It'll help you identify who yourmembers of Congress are.
And I'm sure that if you hadother questions and you wanted
to do some outreach, you couldwork, reach out to your local
arc and they could help youfigure out how to do that.
Speaker 2 (19:02):
So you meet with people on Capitol hill, Bethany,
um, and you would suggest wedon't have to come to Washington
to advocate.
We can.
I know that, um, Jason, youknow, your Congressman, Ron kind
who's in the O'Claire area.
And a lot of those people havehome offices and they do have
visits right within people'shome towns.
(19:23):
Right?
Speaker 3 (19:24):
Yup.
And if you need help findingthose places, I'm sure your
local art could help youidentify who to go talk to.
Okay.
Speaker 2 (19:32):
All right.
Any, any final words, Jason,what do you want to say to other
advocates who are interested inhexane SSI?
Speaker 4 (19:41):
Uh, uh, your, your, uh, congressmen is it, doesn't
read her, look in her.
Don't regret Kelly, your story.
Tell your story, tell your storyby the oldest.
[inaudible].
Speaker 2 (20:01):
That is a perfect statement to end on.
I want to thank you, Bethany andJason for talking about this
important issue today.
Thank you, Tara listeners forlistening to the arc experience
podcast, please be sure to likeshare and subscribe and we'll
talk to you next time.
Speaker 1 (20:18):
Today's episode of the Ark experience was brought
to you by the arc Wisconsin, thestate's oldest advocacy
organization for people withintellectual developmental
disabilities and their familiesit's funded in part by the
Wisconsin board for people withdevelopmental disabilities.
Our theme music called speciesis the property of[inaudible]
(20:40):
and cannot be copied ordistributed without permission.
It was produced by EleanorCheetham, composer and artist
with autism.
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