We talk with Samantha Moreno, a certified rehabilitation counselor, former Center for Independent Living staff member and an independent consultant on benefits management about some of the myths about employment and loss of benefits. She explains ways people can explore employment without endangering their benefits and introduces programs that can preserve benefits when a person begins earning additional income.
For more on debunking myths about working and the loss of benefits, watch the recording of the Administration on Disabilities (AoD) Disability Employment Technical Assistance Center (DETAC) June 2024 National Community of Practice webinar, “Ensuring Equal Access to Benefits Counseling to Maximize Community Inclusion“, featuring Samantha and other presenters from the Colorado Office of Independent Living.
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Presenters
Samantha Moreno is a certified rehabilitation counselor, former Center for Independent Living staff member, an independent consultant on benefits management.
Donald Taylor has been with TASH since 2014, where he is the Manager of Membership & Communications, responsible for membership and chapters, data systems and communication, and collaborates closely with other staff to make sure TASH systems support their work. Donald comes from a background of data systems, operations and business analysis, going back to the 1990s. Donald came to the world of disability while pursuing a degree in history. The history profession is deeply interested in the eugenics movement of the early twentieth century and fellow students studying biomedical systems of oppression inspired in him the desire to make a contribution to this aspect of social justice.
Transcript
Announcer: You are listening to the Administration on Disabilities [AoD], Disability Employment Technical Assistance Center [DETAC] podcast, where we learn from people who are working to improve competitive, integrated employment and economic outcomes for people with disabilities.
In today’s episode, we talk with Samantha Moreno, a certified rehabilitation counselor, former Center for Independent Living [CIL] staff member, an independent consultant on benefits management about some of the myths about employment and loss of benefits.
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Donald Taylor:Samantha Moreno, please introduce yourself for listeners. Tell us about your background and how you came to your current work.
Samantha Moreno: My name’s Samantha Moreno. I have worked for three different centers for independent living. I am a certified rehabilitation counselor, and all-in-all, I think I have about 12 years in the independent living field. So a big chunk of my life has been independent living. And right now – so currently I work as an intake specialist for an employee assistance program. So not directly related to independent living, but I still do a lot of this type of work for my clients. So …
Donald Taylor: Today’s podcast is about the myths and misinformation that people with disabilities have about losing benefits if they get a job. What are some of those myths?
Samantha Moreno: So one of the main ones that I hear are people that say: I can’t work at all; I’ll lose my benefits. And so there’s that one for sure. And then people who think that if they lose that financial part of their benefit, then they won’t ever be able to get that back and they’ll have to continue working for the rest of their life, or not have any financial resources if they have to quit working. I also hear about people that think that if they start working, they will lose access to their doctors, medications, therapies, and just completely lose their health coverage. I also hear people say that what they would make working wouldn’t be worth what they would lose if they lost their benefits. So they’re thinking that they wouldn’t be able to work enough hours or make enough in wages to replace what they have in benefits currently. So those are some of the ones that I hear a lot.
Donald Taylor: So, we understand that the Centers for Independent Living play a powerful role in helping people with disabilities understand how their benefits will be impacted if they get a job. Would you tell us what education services the CILs offer?
Samantha Moreno: Sure. So the beauty of the Centers for Independent Living is that they’ve really embraced that “No Wrong Door” model. And so with every Center you have your five core services, you’ve got your independent living skills training, you’ve got advocacy, you’ve got peer support, you’ve got your information and referral, and you’ve also got transition services. And so the thing with Centers for Independent Living is that we take clients where they’re at. So if you have questions about employment, we’re going to help you with that. If you need help, say, creating a resume, or doing a job search, or finding an apprenticeship, anything like that, we can help you with that. Even if that’s not our core services, we build that into our information, our referral, our advocacy, everything that we do, we can build in employment services, because that’s what Centers do is we just – we meet the need of the community.
And I don’t know if you’re going to ask about specific ones, but depending on the CIL, you have different types of programs that create what we do with our core services. So like for example, the Southeast Center for Independent Living in Massachusetts, and there’s another Center in Montana, the LIFTT Center, and they do their own pre-employment programs as part of their transition services. So they work with students coming out of high school to help them with their employment goals. And so that’s just one example of the way that Centers help the disabled community with their employment goals.
Donald Taylor: What are some of the best practices in educating people about getting support with employment-related needs through their CIL? Why are they important, especially for somebody who wants to get a job?
Samantha Moreno: So you have a lot of different organizations and agencies in the community that provide employment services, but the special thing about Centers for Independent Living is that peer support aspect. So when you are looking for employment or if you’re even just thinking about going to work or even starting your own business, you can go to the Centers for Independent Living and get the peer support from people with disabilities who are already working, because centers are consumer run, consumer driven, so you’re talking to somebody with a disability who is currently working, so you can have that firsthand knowledge from somebody who is doing what you want to do, or something similar, who can show you what they’ve already been through.
Donald Taylor: Sam, can you give us some examples of how people can keep their benefits if they get a job?
Samantha Moreno: Sure. So one way that you can keep your benefits – and so the thing to remember is that there is the financial benefit and then there’s that medical benefit – and once you start working, a lot of people choose the Ticket to Work program through the Social Security Administration. And with that program, they help people 18 to 64, if you receive any kind of Social Security benefits or supplemental security benefits, you can use this program and they can help connect you to an employment network. And so when you’re going through this program, you have a trial work period, where for nine months you can work as much or as little as you can or as you want to without losing any of the benefits – the financial or the medical. And then even after that, you may or may not lose the entire financial benefit, but with the medical benefit, which is very important, you can continue that eligibility as long as you still meet the criteria for the medical benefit.
And I think that’s what scares people a lot, is that they might lose that benefit. But if you think about it, Social Security wants you to go back to work, or they want you to try working, because they want you to be self-sufficient. And so they’ve created these safety nets to where you can continue that medical eligibility for as long as you need it. And yes, the financial part will drop off as you start gaining employment and you go over that income limit. But that’s the way it’s working. That means you’ve become financially independent.
If you start working or if you’re thinking about starting to work, two things you should do some research on is section 1619(B) of the Social Security Act, because that will allow you to continue your medical eligibility while you’re working. Another one is the ABLE Accounts. And it stands for Achieving a Better Life Experience. They’re basically savings accounts for people with disabilities who are working or may have some kind of income that would push them over that income limit. And so this will help you stay eligible for benefits programs as well. And they’re really easy to set up. They’re very quick and easy to set up. So you don’t need to have a financial advisor or a lawyer or anything like that to set up an ABLE Account.
Donald Taylor: So why do you think there’s so much confusion? Where can people with disabilities find the resources they need to better understand how and if their benefits will be impacted if they get a job? Who should they talk to?
Samantha Moreno: Well, they do have benefits counselors and some Centers have benefits counselors on staff. If we don’t, we know who to refer you to, and that person will help you look at your situation specifically, like how much you are already earning. And then they’ll also help you look at the job market, just to project and say, this is what happens if you start working, so that you don’t get tangled up in something and lose your benefits or just have a bad experience with work.
You asked too, why are these myths so rampant? Why do people have such concerns about this? And I think that someone, somewhere probably had a situation where they didn’t communicate well with their caseworkers, and/or they were not able to submit their information to continue those benefits – because there is some maintenance that goes along with working with a disability. You have to communicate with your case managers, you have to submit your pay stubs, you have to submit any kind of changes that happen. So there is that maintenance that you wouldn’t typically have if you didn’t have a disability and you weren’t already receiving benefits. So, yeah, I mean, I can see why people would be overwhelmed by that and just maybe throw their hands up in the air and say, nevermind. But there is that benefit of feeling that you are doing something that you love to do, you’re helping people, or you’re getting to use your creativity, or you’re getting to use that degree that you worked really hard to get, and just getting out into the community and doing something that you want to do. So you just kind of weigh the pros and cons.
Donald Taylor: Is there anything else you want to tell us that would be helpful to people with disabilities who want to work but are scared about losing their benefits?
Samantha Moreno: Well, I think that being organized is very important. Planning is very important. That’s why the Centers for Independent Living offer that peer support, they offer the employment assistance. Because we do know that it is difficult, but it’s something that is doable.
And there’s also – I didn’t bring it up during the webinar [“Ensuring Equal Access to Benefits Counseling to Maximize Community Inclusion“], I wanted to talk about it a little bit – but the personal care aspect of working. And then there’s that anxiety about requesting reasonable accommodations at work. And that’s another very important – that’s why peer support is also very important – so that you can talk to somebody else about: how did you speak with your employer about personal care? How did you ask your employer about changing your work schedule if you need to do that. You know, those are just some things that we don’t have models for that in society; we just don’t have that to look at and say, oh, this is how you do A, B, or C. Everybody is so different and each situation is so different. So that, that peer support really helps a lot.
Donald Taylor: Sam, is there anything else people should know about that I’m not asking?
Samantha Moreno: I like to encourage people to at least try, or at least do some research for themselves and find out if working is something that they want to do. I don’t want people to be afraid of just trying it, because there are these safety nets in place so that you can try it and see how it goes. If you find out that it’s too much or you want to do more, you can always change it up. And also it’s just like anything else, you know, work isn’t for everybody. If physically you cannot, or mentally cannot do work, and you’re feeling really guilty about that or putting yourself down because work is too much, then that’s a problem too. That’s ableism. And that’s something that we can help you with at the Centers too, because there are a lot of people who are volunteering when they can. There’s people that are doing their own businesses, and doing their own thing. So work is just as diverse as your disability. So I guess I wanted to let people know that too: work looks different for everyone.
Donald Taylor: Where can people find out more?
Samantha Moreno: One of the best resources to help you look up what CIL is closest to you is ILRU. It’s the Independent Living Research Utilization Program, and they actually have a map, a tool on their website where you can look up your specific Center for Independent Living. There’s the phone number, there’s the director, you know, whoever you need to talk to there. And so I give that out a lot to people. If they don’t know or if I can’t help them find it, I’ll just give them that. But it’s very quick and easy to use.
Another really good resource is through the Social Security Administration, and it’s called Choose Work. And that website is great for if you are at the beginning of thinking about going to work or thinking about going back to work. There’s a lot of webinars and there’s different success stories and they have their own blog. So you can see the things that people are doing with work.
And then, so another good one is the National Resource Center for the ABLE Accounts.
The National Council on Independent Living is also a good resource. They’re the information hub for the Centers for Independent Living. So if you have any kind of questions about doing advocacy in your community, they’re a great resource to have. And they also have a lot of information about the things that I’m talking about today too.
Donald Taylor: Samantha Moreno, thank you for talking with us today about how to be employed without losing your benefits.
Samantha Moreno: Thank you for having me. This was great.
Announcer: You’ve been listening to the Administration on Disabilities [AoD], Disability Employment Technical Assistance Center [DETAC] podcast.
Today we spoke with Samantha Moreno, an independent consultant on benefits management about managing your benefits when working so as not to lose them. To find your Center for Independent Living visit the Independent Living Research Utilization website at www.ilru.org.
The AoD Disability Employment Technical Assistance Center, or DETAC, is a project of the Lewin Group and TASH, created by a grant from the Administration for Community Living to provide evidence-based training and technical assistance to Administration on Disabilities grantees aimed at improving competitive integrated employment and economic outcomes for individuals with disabilities across the nation. To learn more about DETAC, visit AoDDisabilityEmploymentTACenter.com. For news and alerts about upcoming webinars and podcasts, you can follow us on Facebook, Threads, LinkedIn and X.
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Music for the DETAC podcast is an original composition and performance by Sunny Cefaratti, the Co-Director and Autistic Self-Advocacy Mentor at the Musical Autist. You can learn more about the Musical Autist at www.themusicalautist.org.
We’ll have another episode on competitive integrated employment for you in the near future.
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This discussion was originally recorded on August 14, 2024.
This audio recording and transcript have been lightly edited for content and clarity.