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
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
Welcome to the arc experience, featuring the stories of self advocates with disabilities and their families from around Wisconsin. Be inspired. Take action. And now for today's episode,
Speaker 2:
Welcome to the arc experience podcast. I am your host, Lisa pew. And today we are talking with some experts about our program. That is an important lifeline for people with disabilities. It's been around for a really long time and it doesn't work very well. Go figure. In fact, this program won't let people get married. Sometimes it prevents them from working and it has a lot of other outdated features that really just have to go. So today's conversation is about fixing it. We are joined by two experts who have lots of ideas and also ideas for things you can do. So welcome to my guests, Bethany, Lily, and Jason, and dress. Hello guys. Hello. Hey, so just so you guys know a little bit about Bethany and Jason Bethany, Lily is the director of income policy at the arc of the United States. That's where I work and she specializes 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 the bassline center for mental health law, and also formerly was a law clerk with the us Senate committee on health education, labor and pension. So she's a very important person. And then our friend, Jason Andrus, some of you Wisconsin listeners might know he's also a VIP in Wisconsin. He's president of people, first, Wisconsin, the state's largest self-advocacy organization. He's also chair of the state's independent living council and a graduate of partners in policymaking. Probably most importantly, he lives 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 that we're talking about Bethany is SSI, or, um, the law name, what supplemental security income, right? Most people don't call it that, but then you could, you guess, give us a, like a little history and tell us what this program is supposed to be doing.
Speaker 3:
Sure. So this program was passed back in 1972, so a very, very long time ago during the presidency of Richard Nixon. So long before I was born. Um, but, uh, the program was designed as the actual full name describes to supplement social security income. So if folks weren't eligible for social security, for one reason or another, they would get enough money to live on and not be forced to live in poverty, unfortunately, um, because we haven't updated the program over the years, that's not really what it does anymore. Right now, benefits in the program, 75% of the federal poverty line, which means people only get at a maximum, just under$800 a month to live on. And that's incredibly, incredibly difficult to do, but the goal of this program initially, and what we'd like it to do now is help the lowest income people with disabilities and older adults who aren't eligible for social security have full and productive lives with the support they need and the money they need to rent an apartment or a pay for groceries, things that healthcare services via Medicaid don't pay for.
Speaker 2:
Perfect, perfect explanation of a complicated program. Jason, I know that SSI is something that you rely on you and your family and other people with disabilities, certainly in Wisconsin. Can you tell us like how it helps you and why you need that in your life?
Speaker 4:
Uh, both me and my wife are, are on SSI. And, um, when we got married back in 1996, a few months before that, we went to our local social security office to let them know that I've already intentioned in the area. And we, we asked, uh, you know, what kind of, were there any kind of, um, I don't, these are not to getting married. And they said yes, that you grew up probably be, uh, getting pretty close to half of your income, because both you and your year wife are, uh, disabled. And we were both kinda flabbergasted. And they, they told us that we probably should just live in sin and not getting married and, uh, just lived together. And that was really against both of our, uh, our, our beliefs in religion that, you know, no matter what was gonna happen to us, we were going to try and figure it out. And we did, uh, you know, we are still struggling like everybody else out there. Um, it's I had a job when killed about 10 years ago, rare. I was, uh, being scrutinized every so often about, uh, how much I was making and how much I was working and what I had for assets. Um, both me and my wife. We, uh, can only have up to$3,000 in assets. So that was really, really difficult. And I just got tired of fighting the system and I had a swallow swallow, my pride and just, uh, go back on the system.
Speaker 2:
And I'm assuming that, that, that monthly income, even though it isn't as much as it should be, like Bethany said that it hasn't kept up with the cost of living today is still something that's really important to you. What do you use that payment for reuse
Speaker 4:
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 has a disability that is on as a side to make a living with, without being stressed about what bills aren't going to pay this month. You know, and it's like Bethany said back in 72, it was a modest, uh, uh, raped by it hasn't been in the past, or it hasn't been, I changed in many years and it's really out of date.
Speaker 2:
Yeah. Bethany, I'm sure you hear all the time from people with disabilities across the country about the same things that Jason is talking about and how it impacts his life and really limits him in a lot of ways. What are the reforms that you would like Congress to make? Because it does require Congress to make some pretty big changes to the law, right?
Speaker 3:
Yup. So SSI is a federal program, which means that in order for things to change in it, Congress has to do something so states can make a few things and some states actually add more money on top of SSI to help people out who are on SSI, but really to make changes, to address the things that Jason was talking about, penalties for people who get married, um, the asset limits being so, so low, increasing the benefit level, all of those things would require Congress to change them. And that's what we've been working on at the national arc. We've been working on making sure that marriage penalties get eliminated, that the benefits are increased. Um, we'd like them to be increased substantially because we know that people have trouble paying for rent and groceries. We'd like to see the asset limits increased. I I'd be in favor of getting the asset limits completely eliminated. That's what we've chosen to do in some programs. Um, but even just an increase to something that's a lot like today's money rather than money back in 1984, which is the last time Congress took a look at the asset limits would be great. Um, and then we also have a couple of other rules that we're taking a look at. One of them is around getting help from families. So there are really strict rules. If you have family members who want to help out with helping you pay your rent or your mortgage or helping you buy groceries, these are called in-kind support maintenance rules. It sounds really complicated, but basically what it means is if you get help from your family, your benefits will get cut. And that just doesn't make sense. If you need, you know, some help with groceries one month, or, you know, you need a couple extra hundred dollars for the rent. That's something that your family and friends should be able to help out with. We saw a lot of that help during the pandemic, but people on SSI couldn't take advantage of that because they could've gotten their benefits cut. And so we'd really like to see those rules changed. And then finally, there are also rules that get to Jason's concerns about work. SSI benefits right now are tapered off. So if you start making over a certain amount of money, you lose 50 cents for every dollar you make. And that's not a very good work incentive. So we'd like to see that increase, but we also think that there are some fundamental elements of the program around how social security takes into account money. You make that also need to be looked at those haven't been updated since the program was founded. So, uh, one of them, for instance, I'll give you an example. There is a$65 exclusion for any money you make. So$65 back in, in 1972 was a lot of money, but today that is not a lot of money, um, that can probably fill up your gas tank or maybe help out with, you know, your internet bill or your cable bill every month. But that's not going to cover a lot right now. And so if we had adjusted that for inflation, it would be over$400 right now. And I think that would really help people incentivize get incentivized to go back to work because they have more of a flexible, you know, I don't have to be counting. Absolutely. Every penny I can go to work, I can see how work is for me. And so those are some of the changes where we're advocating for right now up in Congress.
Speaker 2:
That's a lot of changes, Bethany. I mean, I guess when a program's that old, the list gets pretty long, right?
Speaker 3:
That is true. And I could actually listen another seven or eight changes. We would like to see it as, um, but I'll keep it to that, those ones. Hey,
Speaker 2:
Jason, why, you know, hearing what Bethany says are, are some of the big reforms, why are those important to you? How would that make a difference in your life?
Speaker 4:
Then layers penalty would be a big one. We would, you know, just me and my wife would get, uh, uh, twice as much as we're getting now in our, uh, SSI, uh, the asset limits, you know, adding more than$3,000 in our, our bank accounts. And, you know, I would love to get back out there and work and, um, show my ability to repeat ball, uh, that I can, uh, work and that I'm an asset to wherever I work. And that is the case with so many self advocates in, uh, in, in the country, they don't want to work. Uh, there are some that are work, aren't working and a lot more of these days. And, you know, statistic has shown that once a person with a disability starts a job, they're gonna stay with that job until either, uh, the place the place closes down or, uh, the person with the disability retires. So they're, they're there for a very long, a very long time night. I just don't understand why Congress doesn't see these, these as, uh, um, great goals.
Speaker 2:
Really. It sounds like what we're asking for is pretty common sense that could, you know, you know, getting more people with disabilities into the workforce by eliminating those work disincentives. I mean, that's kind of what we need now in our economy is more people willing to work. So it, you know, it really is kind of confusing why we can't find more allies. Bethany, can you talk a little bit about what's happening in Congress now and whether or not you see some traction for these issues in this conversation?
Speaker 3:
Sure. So Congress right now is thinking about how can they help recovery after the pandemic? So we had, we've spent the past year and a half going through the pandemic and it has been really, really hard for people. And as we're coming out of the pandemic, people need help. And so they are thinking about how to help people. And one of the things they're thinking about is around some SSI changes, um, the big package, and you may hear people use a pretty complicated word to describe it, budget reconciliation. I didn't know what this word meant a couple of years ago and I had to learn. So, um, but I, that was a pretty easy way to explain it is it's just a budget bill, but it has special rules in the Senate, which means you only need 50 votes for it. So the Democrats in the house and the Senate are currently talking about a budget bill that they could pass. And so they're thinking about improvements that the disability service system needs like increasing access to home and community-based services and reducing wait lists, but they also know that SSI is important. And we got a big letter a couple of months ago from 18 senators. I was really, really excited to see that many senators interested and caring about SSI. Um, that went up to the white house saying we should really do something about SSI and we've seen more things come out on that. Just a couple of a bit ago, we had a Facebook live event with representative Jamaal Bowman from New York and representative Ayana Presley from Massachusetts who wanted to talk about how important SSI was for them. So we've really been seeing Congress for the first time in a long time, interested in SSI and wanting to do something about SSI. So I am really more optimistic than I thought I would be at the beginning of this year about maybe seeing some SSI changes. Um, so fingers crossed. That's
Speaker 2:
Really exciting. I'm sure, you know, Jason, I'm sure 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 a homeowner and you know, I can't even imagine for people with disabilities a couple like you and you're right. Julie thinking about retirement, but being so limited in the amount of money you can save. That's just gotta be a little bit scary. I would think
Speaker 4:
It is. Um, you know, you're, you're, you're wondering, you know, where your, your next meal is coming quite quite a bit. And, you know, we're brought in our, in our, uh, upper forties and a retirement is, is, uh, coming up there and, you know, 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, you know, matter a day or two year because we're paying for food ranked in, um, necessities that we need to have to, to live.
Speaker 2:
Yeah. So Bethany, we need to get these reforms moved through from people like Jason. So what, what advice do you have for our advocates in Wisconsin and across the country about how we can help tell this story and to find more friends in Congress on these changes.
Speaker 3:
I think you hit on it directly. Lisa, tell your story. If you know your member of Congress. I know a lot of self advocates are really have met their members of Congress and know their members of Congress pretty well. And if you haven't talked to them about SSI before, talk to them about SSI, talk about why it would be important for these changes to happen. I mean, I tell stories like Jason's to memo, to staff on Capitol hill a lot, but there's nothing like hearing from a person who's going through the experience right now. Um, and I think that can really make a difference and it can build champions. I think that's why many of the champions we have care so much about this issue is they, they know people who are going through that trouble and they want to help. So tell your story and reach out to your member of Congress. The national arc has an action alert that is on our website. If you go to the arc.org backslash action, you can find an action alert that will let you talk about HTPs. It will let you talk about SSI. You can also talk about paid family leave. If your family caregivers are running into problems with that. And so that's always there. You can always use that. It'll help you identify who your members of Congress are. And I'm sure that if you had other questions and you wanted to do some outreach, you could work, reach out to your local arc and they could help you figure out how to do that.
Speaker 2:
So you meet with people on Capitol hill, Bethany, um, and you would suggest we don't have to come to Washington to advocate. We can. I know that, um, Jason, you know, your Congressman, Ron kind who's in the O'Claire area. And a lot of those people have home offices and they do have visits right within people's home towns. Right?
Speaker 3:
Yup. And if you need help finding those places, I'm sure your local art could help you identify who to go talk to. Okay.
Speaker 2:
All right. Any, any final words, Jason, what do you want to say to other advocates who are interested in hexane SSI?
Speaker 4:
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 story by the oldest.[inaudible].
Speaker 2:
That is a perfect statement to end on. I want to thank you, Bethany and Jason for talking about this important issue today. Thank you, Tara listeners for listening to the arc experience podcast, please be sure to like share and subscribe and we'll talk to you next time.
Speaker 1:
Today's episode of the Ark experience was brought to you by the arc Wisconsin, the state's oldest advocacy organization for people with intellectual developmental disabilities and their families it's funded in part by the Wisconsin board for people with developmental disabilities. Our theme music called species is the property of[inaudible] and cannot be copied or distributed without permission. It was produced by Eleanor Cheetham, composer and artist with autism.
