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Asset limits are just one economic hurdle people with disabilities face 

Patrice Jetter is a disability rights activist. (Ted Passon/All Ages Productions)
Patrice Jetter is a disability rights activist. (Ted Passon/All Ages Productions)

An outdated system that keeps people in poverty might finally get an upgrade.

In 1989, the government set $2,000 as the limit for how much money someone with a disability can keep in savings and remain eligible for federal benefits.

But a bipartisan proposal in the Senate seeks to lift asset limits so that someone collecting Supplemental Security Income could save up to $10,000 in the bank.

Disability rights advocate Patrice Jetter of Hamilton, New Jersey, is supportive of the change. She works part-time and relies on income-based assistance for food, housing and health care. She worries that the change wouldn’t mean much for her life and for others who want to live independently.

Patrice Jetter working as a crossing guard. (Courtesy of Ted Passon/All Ages Productions)

Full interview transcript

Deepa Fernandes: “Millions of people with disabilities who rely on the social safety net for basic needs like food, shelter and health care have a long way to go to feel stable financially. Our next guest argues it’s because systems are not set up for people like her to live independently.

Patrice Jetter is a disability rights activist from Hamilton, New Jersey. She’s hopeful new proposed legislation on asset limits will be a step forward for change, and she joins us now. Patrice, welcome to Here & Now.”

Patrice Jetter: “Thanks.”

Fernandes: “So Patrice, let’s break down asset limits. It’s a very wonky term, but it really defines your life in so many ways. So let’s give a quick explainer.

“If someone has a disability and is collecting Supplemental Security Income from the federal government, in order to stay financially eligible, they’re not allowed to keep more than $2,000 in the bank. So on a basic level, I’m wondering what that limit means for someone’s wellbeing if they’re not allowed to really have much money saved?”

Jetter: “From my experience, I receive the housing choice voucher, which was also known as section eight, where I pay 30% of my income and HUD pays the difference. Now, if I saved up $2,000 in the bank, I have to report that to HUD. And that affects how much rent I have to pay. So I was advised not to keep more than $5in the bank to keep the cost of my rent down because everything you have counts as income.”

Fernandes: “And I imagine, Patrice, that’s really hard because you do need to have a little bit of savings. Have you needed to save for things that you then haven’t been able to?”

Jetter: “[Yes.] I remember that I needed to get my car fixed, and in order for me to save up $500 for a car repair, I needed four consecutive weeks’ pay to cover that repair. So in order to save the money, I didn’t cash any of my paychecks and I had to walk to work for an entire month and not buy myself anything for the whole month because I needed the money to get my car fixed.”

Fernandes: “So there’s an asset limit currently of $2,000 that was set a couple decades ago. And I’m just wondering if you can tell us what was the intention behind that? Because you’ve just laid out to us why it makes it very hard. Why did the government want there to be a limit of, of such a little amount of money, $2,000 for an individual, $3,000 for a married couple.”

Jetter: “I never knew why, but it’s something that they decided that that was the way it was going to be. I have to go along with it because I don’t have very many options. Now, when they first made that law back then, the cost of living was way cheaper. So back then $2,000 was a lot of money. But in this day and age, $2,000 might be the cost of someone’s rent now for one month.”

Fernandes: “So you need some savings or you wouldn’t even be able to pay your rent?”

Jetter: “The funniest thing is how would you do that every single month? And not just rent. Where I live, you also have to pay all the utilities. You have to pay electric, heat and hot water, gas, so even if you had $2,000 in the bank, you still wouldn’t have enough money to make it if you had to pay for everything without the assistance.”

Fernandes: “Yeah. So Patrice, we have this proposal in the Senate that would change the asset limits for the first time in decades. And if the legislation is passed, someone with a disability would be able to save up to $10,000 in the bank. It has bipartisan support, and I know you’re supportive of this change, but that you also think it’s complicated. Can you tell us why?”

Jetter: “Because a lot of services that help people with disabilities — Medicaid, Low Income Energy Assistance Program, which is known as LIHEAP, food stamps — they all have income limits attached to them, so if you’re allowed to save $10,000, which in a sense it’s great, the problem is that having the $10,000 would make you ineligible for some of these programs that help people with their daily living, and you’re going to be right back at square one. 

“So my thing is, I think it’s great, but I also think that these other programs need to be brought up to speed to make a person with a disability successful.”

Fernandes: “So, in other words, fixing one program, in this case, Supplemental Security Income for People with Disabilities, might make it even harder because you would lose your access to the social safety net for housing and food because your income would be too high.”

Jetter: “Exactly … I’ll give you an example. If I didn’t work and I stayed home all day and I did nothing, Food Stamps, which is now called the SNAP program … I would be eligible for over $100 a month in food stamps if I stayed home and did nothing.  

“But because I work a part-time job, I’m only eligible for $10 a month in food stamps because I work. Now to me, a box of cereal now is almost $7. So $10 would buy me a box of cereal and maybe a quart of milk. But I feel like as long as I’m working, I stopped applying for food stamps because I felt like for me, it wasn’t worth the hassle of going down to the food stamp office, having to sit there for three, four hours for $10 a month. So as long as I’m working, I just chose to pay for my food myself.”

Fernandes: “And for a person with a disability, I imagine sometimes you have to attend doctor’s appointments and that makes holding down a job a little more

challenging.”

Jetter: “Yes, because some people with disabilities have to go to the doctors a lot … I’m one of them. And sometimes when you have to take time off to go to the doctors, employers get like an attitude because it’s not like you’re doing it on purpose, but you have to go and not all doctors have hours after 5 p.m. or on the weekends.”

Fernandes: “Yeah. It seems like you’re saying that politicians, while they may be well-intentioned in wanting to lift the asset limit here, they’re missing the mark on how best to help people with disabilities like you and others to live independently and cycle out of poverty. What do you think the solution is?”

Jetter: “I think the solution is that they should take into consideration that they have to make sure that when they try to make programs to help people with disabilities that a lot of people with disabilities still rely on other services and they need to do it in a way where people can save money and not have to worry. But sometimes you have to make an exception to the rule to help people like us so that you’re not setting yourself up for a failure.”

Fernandes: “It seems like a more holistic approach where all the various social safety net programs are actually taken together to see how they impact a person’s life might be a better solution.

“And, and I’m wondering, Patrice, just ahead of next year’s elections, you’re an activist in the disability community. You’re front and center of trying to present solutions for your community, and I’m wondering if you feel like your needs and the disability community’s needs are even being addressed as we come into this election year. Is there anyone who is centering your community?”

Jetter: “Well, I mean, like, I know that there’s people that want to help, and it’s just really hard. Some of my friends have given up because they really don’t think anything is gonna change. Because, to them, it seems like it never does.  But we can’t give up. And I try to get my friends, to like … when it feels like you want to give up, we got to keep trying.”

Fernandes: “So, Patrice, did you ever think about running for elected office because you know so much about how all these systems work and frankly, don’t work?”

Jetter: “Like I tell people, I’d rather work for the sanitation department because I stand a better chance of cleaning up the street than cleaning up Congress.”

Fernandes: “Oh, that’s a sad reality, isn’t it?”

Jetter: “But at least the streets are spotless.” 

Fernandes: “That’s true. That’s true. It’s always nice to have spotless streets.”

Jetter: “Yes.”

Fernandes: Patrice Jetter is an advocate for people with disabilities from Hamilton, New Jersey. Patrice, thank you so much.

Jetter: “You’re welcome.”


Ashley Locke produced and edited this interview for broadcast with Peter O’Dowd. Locke also adapted it for the web.

This article was originally published on WBUR.org.

Copyright 2023 NPR. To see more, visit https://www.npr.org.