ANCOR Links: Season 1, Episode 8

André Floyd

Welcome to another episode of ANCOR Links. I am your host André Floyd and I am here with ANCOR’s COO and Foundation Director Gabrielle Sedor. Thanks for joining me on this episode.

Gabrielle Sedor

Always happy to be here. Hi, André.

André Floyd

Hello, I’m doing well, I’m glad you’re here because this is the first episode of 2024. We made it into the new year. And we’re really excited, we have a really fun calendar for you all. So please make sure you are subscribed to the podcast so you can get new episodes as soon as they are released. And we’re going to do something a little interesting this year, we’re going to follow a few themes. And in January, it is economic equity, or Poverty Awareness Month. And we are going to follow that theme for these next couple of episodes. And this episode, in particular, we are going to look at poverty and in the disability community. Now, there are a lot of places we could go with this conversation. I just kind of want to start off by giving some numbers from the United Census Bureau I saw in 2022. The poverty line the official poverty line was at 11.5% for all Americans in 2023. It looks like it went up a bit at 12.4%. Now I will caveat and say that there is there does seem to be some consternation over the way that we are still defining the poverty line. It is defined as three times the minimum cost of food, which was established in 1963. No disrespect if you were around in 1963, but that was a little a little while ago. So I note this to state that whatever the numbers are, given housing, the cost of housing and other things, you’re probably looking at the numbers being even larger than they are reported. Now, the National Disability Institute notes that 27% of people with disabilities are at that poverty line or below that poverty line. And that is just kind of mind-blowing.

Gabrielle Sedor

Without a doubt. So it’s hard to get by for a lot of people in the United States these days. Right, but particularly for people with disabilities. And what makes it even more of a challenge are the barriers that are set in place. Even when folks find a job they love, find a house they love. There’s just sometimes things seem to be kind of stacked against people with disabilities, particularly folks with intellectual and developmental disabilities, like anchor members support.

André Floyd

Yeah, and you mentioned some of those factors and housing and income. It’s it’s the poverty line is one of those things are just thinking about poverty overall, there are so many things that kind of you can point to in just broadly, that would be helpful in combating this across the broad scope of the problem in the country. But for people with disabilities, it does seem like there’s even more restrictions and neither more issues and concerns to try to address. So just for my own knowledge and maybe others who are listening, what are some of those contributing factors that kind of add on top of the rest that everyone else below that line feels as well?

Gabrielle Sedor

Well, sometimes it’s harder for people with disabilities to find employment. There’s discrimination. There’s ableism at play, and I know that you have spent some time on a previous podcast talking about that. And even with incentives for employers to hire a more diverse staff, a lot of times people forget that diversity also includes disability. But André, here’s the kicker, even if somebody finds a job that they love, and a supportive boss, and people that really want them to be there. If you’re receiving medical assistance, or aid from another federal program, you have to be careful that you don’t earn too much.

André Floyd

Wait, wait, wait, wait, wait, wait. Earn too much?

Gabrielle Sedor

Yeah. So let me let me just take a step back. Most federal programs that support people with disabilities are what we call means-tested, as in you can’t have more than a certain amount of money or assets and still be able to access them. And that’s kind of checked pretty often. That includes Medicaid, Medical Assistance, Social Security Income, and Social Security Income for Disability Income. So yeah, sometimes when you need to have access to programs that provide supports, that you need to live and work, ironically, that you would never be able to pay for yourself, it can feel like you’re doomed to living below the poverty line.

André Floyd

Okay, so that right there is something that I feel like a lot of people like in this space, this is something that is commonly known. But I feel like and I hope that people are listening that aren’t familiar with the space just took themselves, like took a step back and was like, Whoa, I did not know that. Because that is massive, you require or need or, you know, a level of support. And that’s part of what’s needed for you to, you know, live and function in the community through these things that we say we want to have happen. And we have led a lot of legislation to push for that to happen, that that can be a burden to you, when it comes to making an income. Just seems a little bit backwards. Bonkers. Thank you. I try to be nice and say backwards. Yes, I think that fits.

Gabrielle Sedor

Yeah, It’s bonkers. But here’s the good news. Here’s a bright line. There are things that are happening, and programs that exist to try to counter these unintentional effects. So for example, there’s some state specific programs. You know, Pensee is my residency. I’m from Pennsylvania, I talk about it all the time. But there is a program called MAWD, medical assistance for workers with disabilities, which is a special form of medical assistance for workers with disabilities, that allows you to work more than the usual number of hours or gain in your income, and not have to worry about your medical assistance benefits. So I’m certain that there are other states that have similar programs, but that’s the one that I’m most familiar with. There’s also programs that you can access anywhere, like a special needs trust, which is exactly what it sounds like. It’s a special trust account for people with disabilities. But usually, with a trust, you have to wait to access it or it triggers when something happens. And just like everybody else, someone with a disability could really use cash for day-to-day spending, as well as planning for the future. And that’s the beauty of ABLE Accounts, ABLE stands for Achieving a Better Life Experience. And that’s exactly what these special savings accounts for people with disabilities help to do. I was really lucky to be able to able, see what I did there.

André Floyd

I like it. I like it. I didn’t even catch it till you stopped. So thank you so much.

Gabrielle Sedor

I had the pleasure of talking with Jody Ellis from the ABLE National Resources Center to learn more about ABLE accounts, how you know, you’re eligible, how to set one up, it was a great conversation.

André Floyd

Yeah, I love that I just so Okay, I just want to reset for the people. For the people listening, we started off the top, and we talked about the poverty line and how difficult it is the multifaceted factors that apply to everybody in the US that are below the poverty line. And then we looked at specific factors in the disability space facing people with disabilities, not to, to include income, basically restrictions on everything, which means, like you said, when there’s a job, that you finally get the ability to have a job that pays you fairly and equitably, equitably. And it’s a good salary. You still like that’s not the end of the world. Whereas for most people that would help them move out of the park, that that poverty line above that poverty line. But that’s still not the case because of these restrictions. And now, we are seeing, and I am thankful that there are things being done to help mitigate that part of the process for people with disabilities. And it sounds like there are a few people working on it, which is great because this was like a could be like a mind-blowing moment for people. Why isn’t somebody doing something? But people are and that’s great to know. So okay, ABLE accounts are the thing we are going to get into and talk about with Jody Ellis. Correct?

Gabrielle Sedor

Correct. And I think the most helpful thing that our listeners could do is taken the information and share it and spread the word because you know that you have a neighbor or a friend, or you are someone that has a family member with a disability that could probably benefit from this. The only challenge with ABLE Accounts is I think, not enough people know about them, and not enough people are utilizing them. And the program itself just keeps improving year after year. And we can talk about that. You’ll hear about that well when I when I talk with Jody. But if our listeners could just take fun, find one person in their network and kind of share the news about ABLE accounts with them. I think we could make some decent headway into this space. Yeah,

André Floyd

Yeah, at the end of the conversation, I remember Jody giving numbers talking about how there aren’t really that many ABLE accounts that have been opened and they’re so easy to open. So definitely want everybody to stay tuned to the full conversation because not only is Jody great, but she’s giving great information that’s super, super important to help combat this and make this space a little bit more economically equitable for people with disabilities.

Gabrielle Sedor

Hi, and welcome. My name is Gabrielle Sedor. I am here with Jody Ellis from the ABLE National Resource Center. I am so excited that Jody can join us today. Jody, tell us a little bit about the ABLE National Resource Center and what you do.

Jody Ellis

Thanks for inviting me to share all things ABLE. And we tend to use a lot of acronyms in our field. So I want to be sure to explain that ABLE is an acronym for achieving a better life experience. So a little bit about ABLE NRC, the National Resource Center, it is a leading comprehensive source of objective independent information about Abel programs and activities. Our mission is to educate, promote and support the positive impact that ABLE can make on the lives of millions of Americans with disabilities and their families. We were founded in 2015, and managed by the National Disability Institute. Our website, ablenrc.org is the go-to source for all information of ABLE. It’s for people with disabilities, their families, employers, state and federal agencies, tax practitioners, financial planners, attorneys, and service providers, including educators and other support professionals. So

Gabrielle Sedor

So, an ABLE account is essentially a savings account. So how is it different from my savings account or any other savings account? What makes an ABLE account really stand out?

Jody Ellis

Yeah, so an ABLE account is different than a traditional bank account. Because it was designed specifically as a tax advantaged account for individuals with disabilities and their families. And what is great about enable account, there’s an extra perk that is not available for a regular bank account, is that for people with disabilities that are eligible for means tested benefits, like supplemental security income or Medicaid Medicaid waiver. These means tested programs really generally indicate that an individual in order to be eligible should have less than $2,000 in assets or in savings. But if the money is in an ABLE account, then generally individuals are protected from these means tested benefits, and they can certainly have much more in assets. And they do not have to live in poverty in order to have these benefits that they’re entitled to.

Gabrielle Sedor

That is so important. Especially, you know, as here at anchor, you know, this month, we’re focused on on financial equity for people with disabilities. And it’s not as simple as just well just save your pennies, save some money, don’t spend so much. It’s not that easy, especially if you’re in a program like Medicaid, or SSI or SSDI. So, how do I know if I’m eligible for an ABLE account?

Jody Ellis

There are some eligibility standards from the ABLE Act. And the first eligibility is that your onset of disability has to be before turning 26 years of age. So this doesn’t mean that you have to open account before the age of 20 e6 It just means that you have to have had your onset of disability before turning 26 years of age, you do not necessarily have to be receiving SSI or SSDI, to be eligible to open an account. And then there are some state plans that may have eligibility requirements like residency, state residency, some do and some don’t. So, you would have to just look at that to see if you would be eligible for a specific state plan, but generally it is the age and then the determining factor of your disability. So if you’re not on SSI or SSDI, you would need a letter from a medical doctor indicating or a form filled out from a medical doctor indicating that you do have a disability.

Gabrielle Sedor

That is such a helpful distinction Jody, because I think when I first learned about ABLE accounts, in my mind, I must have equated it with like, a college savings account, right? For some reason, I always thought that ABLE accounts were for kids and for younger adults. So it’s really helpful to know that that’s not the case. So you mentioned that having an ABLE account means that you don’t have to worry so much about that $2,000 limit if you’re in a means-tested program, but how much can you save in an ABLE account?

Jody Ellis

There are annual contribution limits. So I’m going to give you the 2024 contribution limits, but they do change each year. But under the 2024 guidelines, an individual can have $18,000 contributed to their account. And then there are also able-to-work guidelines where an employee can contribute an additional $14,580 If they didn’t already make contributions to a retirement plan. And these amounts are slightly higher for Alaska and Hawaii. But those are the annual limits. Now, in terms of the means-tested programs, the first $100,000 and ABLE accounts are exempted from that $2,000 individual resource limit. However, there are you know, ABLE accounts are savings accounts, but they can also be investment accounts. So your contributions can be invested over time and really grow your assets. So if that is the case, there are different state caps of how much investment and growth you can have in your accounts. But many states have that to 500,000. Range, some a little bit higher, and some a little bit lower. But that’s the range that we’re looking at here with ABLE accounts.

Gabrielle Sedor

That is amazing. That is really incredible to know that if you are someone with a disability, you do not have to live in poverty, you can really utilize the ABLE accounts in a way that works best for you and for your family. For reassurance, I have no idea. Like it ever reached those limits. So that is so wonderful to know. But what let’s just say that I have been really good with my saving and maybe I’ve also got some contributions from my employer. What can I do with those funds? How can I spend money from the ABLE account? So are there any restrictions?

Jody Ellis

Funds from an ABLE account can be used for what the guidelines say are qualified disability expenses, and sometimes we use the acronym QDE. But the great thing about the qualified disability expenses is it really includes so many different domains that have expenses. So for example, it might include education expenses, housing expenses, transportation, employment-related training and support, assistive technology, your health, legal fees and basic living expenses such as food, and there are other examples as well. But there are so many things that your funds could be used to be able to pay if you if you need it.

Gabrielle Sedor

That’s fantastic. Can anyone add funds to enable account? I know I can. I know my employer can. But let’s say my Great Aunt Martha wanted to send me a gift—could that go into my ABLE account?

Jody Ellis

Yes, that is one of the great perks about ABLE accounts is anyone can make a contribution to an ABLE account, any person can actually a special needs trust could give a contribution. And on our website, we actually have a gift card option for giving the gift of independence. So anyone, it could be a neighbor, it could be just anyone in your circle of support. Individuals who are ABLE account owners, they could ask their family and friends for a gift card for contribution to they’re able to count. We have one ambassador that said, I’m kind of tired of getting socks for Christmas and for the holidays. So he’s like, I now just ask for gift cards.

Gabrielle Sedor

I love socks for Christmas. For the record, anybody involved in the ANCOR holiday gift exchange knows this. Okay. So I’m terrible at getting to the bank, I’m terrible. So do I actually have to go to a bank to set up my ABLE account?

Jody Ellis

No, you do not need to visit a bank in order to open up an account. Most of the state plans have the online account option. And if you’re not comfortable with opening an account online, some state plans have the ability where you can submit actual paperwork hardcopy paperwork to the plan to get that open. But I think that not having to go to a bank that also helps the state plans to lower their fees. So a lot of times their fees are lower than maybe a traditional bank account, because they aren’t the typical brick and mortar banks.

Gabrielle Sedor

That’s a relief because I know that I’m so bad at getting into places like that. Now, if I wanted to set something up if I was nervous about doing an account online, I’m pretty sure that a lot of states do have resource centers. But if I can’t find one, can I reach to the National Resource Center?

Jody Ellis

So, the ABLE National Resource Center will give resources that would be applicable to anyone that is living in any state and in our nation. But also on our website, we do have a state plan comparison tool, so you can look up regardless of where you are living the attributes of each of the state plans so that you can identify what plan suits you best, and what plan is most seems to be applicable to something that you would want to set up. So we do have that. And then in terms of local support, my guidance or recommendations is, is always to rely upon your trusted circle of support, you do not have to be expected to know everything about ABLE accounts to get started or to open one up, you can ask trusted family members, or guardians or representatives to kind of help you along in you’re able to count paths.

Gabrielle Sedor

That’s good. I’m really, I’m really hopeful that our listeners can help spread the word about this incredibly valuable tool. And, you know, if I had a family member with a disability, this would be one of my first steps. I would you know, automatically open up an ABLE account because why wouldn’t you? It’s such a wonderful, wonderful resource to have, especially as you’re planning for the future. Here’s kind of a question. Speaking of planning for the future, can ABLE accounts be used towards end-of-life needs, like funeral needs? Like, let’s just say I don’t have a special needs trust? Could I use my ABLE account or could my family use the ABLE account in the same way?

Jody Ellis

Yes, end of life needs are part of qualified disability related expenses. So you absolutely could you do not need to rely upon a special needs trust for that expense.

Gabrielle Sedor

I hate thinking about those things, but it’s better to think about them now. Right then when you really need to. Jody, I loved just browsing through the National Resource Center’s website, it’s got such a wealth of information there. Do you want to just repeat your website so that folks listening that want more information can get there and kind of take a look for themselves?

Jody Ellis

So you can find our resource center at www.ablenrc.org. And we have a variety of different resources for a varied audience. We have information for people who just want general information about ABLE accounts, we have information for people who are just getting started and thinking about enrolling, we have information for people who already have an ABLE account established, and they want to know how to management to manage that account to its highest impact level. So the resources that you can find, we do have decision guides, we have a lot of webinars that are on demand 24/7, we have podcasts, as well. We have an able-to-save podcast series. We have toolkits, we have achievable newsletter, and I would encourage listeners to sign up and subscribe to our newsletter to get current ongoing information. And we also have some policy pieces of information from either IRS or Social Security Administration that can kind of help guide some questions that maybe some of the people that are coming to our site might have. So we have a wealth of information. It is all free and accessible at any time. And we welcome you to visit and we’re really hoping to provide information for people we want to increase awareness. We want to break down barriers that people may have to opening accounts. Right now the latest data as of September 30, 2023. There are under current rules approximately 8 million people with disabilities who would be eligible to open up an ABLE account. And there are only 158,421 ABLE accounts open. So that is like ridiculously low percentage right of people, and more people need to benefit from an ABLE account. So I hope our discussion today can help influence that and move the needle.

Gabrielle Sedor

Wow. What an untapped resource. This is amazing. Jody, thank you so much for joining us today. I really appreciate you helping to spread the word. I think ABLE accounts are amazing. I love the work that continues to happen with them. Just this year, the annual cap on what you can contribute has just increased. So it just continues to be good things coming.

Jody Ellis

And also as of January 1, 2026, the eligibility to open up and an ABLE account is going to increase from the disability onset being before the age of 26 as it is now to being before the age of 46. So there are going to be even better things to come in terms of serving more people with disabilities and their families. So even more will be able to benefit in in a couple of years from now.

Gabrielle Sedor

That is awesome. Jody, thank you and your team for all of the work that you do. And let us know if we can do anything to continue to spread the word on ABLE accounts.