Roughly 70% of individuals with a disability are unemployed. One of the main barriers is the fear of employment causing them to lose their disability benefits. Todays guest, Raymond Cebula, has spend his professional career educating people that going to work is possible, and almost the only means to get out of poverty. Raymond Cebula, who is a program director at Cornell University's Yang tan Institute for unemployment and disability. Raymond has dedicated his professional career educating on how employment impacts benefits, and advocating for individuals with a disability, both in court and in Washington DC. You won't want to miss any part of this interview. After listening to the episode, find more information at any of the links below. And please make sure to share this episode with individual with a disability, families and professionals that support individuals with a disability who are interested in going to work!
Disability Work Incentives General Information: Here
The Red Book - A 60 page summary guide to employment supports for people with a disability on SSI/SSDI: Here
Information on Ticket to Work: Here
Information on 1619(B) and the threshold for each state: Here
Links for The Landscape Pages
Link to The Landscape FB Page
Link to The Landscape Instagram Page
Link to sign up News Letter
Link to The Landscape LinkedIn
Roughly 70% of individuals with a disability are unemployed. One of the main barriers is the fear of employment causing them to lose their disability benefits. Todays guest, Raymond Cebula, has spend his professional career educating people that going to work is possible, and almost the only means to get out of poverty. Raymond Cebula, who is a program director at Cornell University's Yang tan Institute for unemployment and disability. Raymond has dedicated his professional career educating on how employment impacts benefits, and advocating for individuals with a disability, both in court and in Washington DC. You won't want to miss any part of this interview. After listening to the episode, find more information at any of the links below. And please make sure to share this episode with individual with a disability, families and professionals that support individuals with a disability who are interested in going to work!
Disability Work Incentives General Information: Here
The Red Book - A 60 page summary guide to employment supports for people with a disability on SSI/SSDI: Here
Information on Ticket to Work: Here
Information on 1619(B) and the threshold for each state: Here
Links for The Landscape Pages
Link to The Landscape FB Page
Link to The Landscape Instagram Page
Link to sign up News Letter
Link to The Landscape LinkedIn
Naveh Eldar 0:16
Welcome to the landscape, a podcast to shed light on the people, programs and businesses that have changing the landscape for individuals with any type of disability. I'm your host Naveh Eldar. Today's guest is lawyer Raymond Cebula, who is a program director at Cornell University's Yang tan Institute for unemployment and disability. Raymond has dedicated his professional career educating on how employment impacts benefits, and advocating for individuals with a disability, both in court and in Washington DC. You won't want to miss any part of this interview. I'd like to thank my partners in crime and colleagues, Tina Jones, and Stephanie Potter from amerigroup and john Camp relleno, from UnitedHealthcare, for helping with the interview questions. Before we start, please share this information with as many others as you can think of including sharing this episode on your social media pages. The conversation starts with Raymond explaining the difference between SSI and SSDI.
Raymond Cebula, III, J.D. 1:27
SSI is a needs based program is provided to people who are either low income and resource poor, or to people who have not earned enough work credits for the insurance program, the SSDI program, so it requires people to be aged, blind or disabled, and poor. The benefits that are paid are it's 72% of poverty. So we're talking real poor, okay. SSDI is an insurance program. It's the same insurance program that provides us with retirement benefits. But if you have worked and earned a specific amount of credits, depending upon your age, you are insured should you need those payments for a disability that is not affected by resources. It's not affected by any other income unless it's work related income.
Naveh Eldar 2:28
You know, this podcast is for individuals who have a disability of any kind. And so let's start with sort of people I specifically serve typically have SSI. So let's start there. So can you explain to us how we're going back to work, impact individuals that have SSI,
Raymond Cebula, III, J.D. 2:48
people on SSI, have to first understand that everything impacts that program, it's a very sensitive program. So unearned income, earned income moving, you know, it could potentially impact your benefits. And that's the first rule. However, the work incentive rules for Social Security and Supplemental Security Income specifically, are incredible. You know, Social Security is going to end up counting less than half of your earned income. And that only gets better. So you can't possibly I mean, I'm not a mathematician, but you can't possibly lose with dollars coming into the household. They're going to first look at unearned income. So for instance, if somebody has, let's talk about current events, if somebody has unemployment compensation, that's unearned income. And this COVID bump of $300, the feds are putting into play is going to result in an SSI recipient having cash benefits suspended because they have too much unearned income. If they are going back to work, and they have no other income, we go right into the earned income situation. And what you first look at are several deductions, a Student Earned Income Exclusion, Impairment Related work expenses, past contributions for plants to achieve self support, and then we're looking at cutting it in half. So there's a potential to have a whole bunch of your earned income excluded, right off the top. And you know what, as a planner, what we try to show people is that look, you have to check, you may have to hunt and again, they're hunting for something that's in plain sight. They just have to think and expand their minds a bit. Yeah, and get all of those potential deductions. So that we could see somebody who receives $794 a month this year, going to work, and immediately making 14 $100, but still be cash eligible for SSI. And all I can do for my consumers is say, now you have to make an informed choice 794 or 1400.
Naveh Eldar 5:24
So let's talk about some of those exemptions that they can have written off. Can you explain some of those? And how in what qualifies for, let's say, like medical expenses, for example?
Raymond Cebula, III, J.D. 5:35
Yeah, the Impairment Related work expenses are really fantastic, because it's someplace where you can really let your mind go free and be creative. You know, there are is a list in the social security regulations that the service animals, an obvious one, you know, on the job supports that you are paying for out of pocket. But the basic three questions that you need to ask is, is this related to a disability? Is it related to my ability to work? And am I paying for it without any reimbursement? So we can hold up a cell phone? For the person with the right disability? Who has a communication issue on the workplace, and would rather text back and forth with their boss? Right? Yeah. And that's pretty common. Somebody asked me recently, so the cost of the app that allows that to happen would be the early. And I said, No, that and the monthly cell phone bill. Okay, because even though you need this cell phone 24 hours a day, is it related to a disability? It is now? Right? Do you need it to work? Absolutely. And are you paying the bill out of pocket? So we can write off somebody's entire phone bill? And if you use that kind of hunting and expanding? I mean, I don't know how much my phone bill is, but it 80 bucks. That's a pretty good deduction.
Naveh Eldar 7:15
So what if somebody needs at home supports? And they're afraid that going to work with impacted disability? So they have like a personal assistant at home?
Raymond Cebula, III, J.D. 7:25
Yep. You know, that I think we need to relate to work as well. You know, strictly speaking, those supports that you have on the job are the ones that people want to count. Now, if my advocacy voice comes out, and it always does, I'm going to tell you that if this person needs assistance, to get ready for work, and needs assistance to get unready from work, right, those hours, if they're being paid for by that person and not by Medicaid would certainly count. Because if you can't get yourself dressed and cleaned up, you don't have a job. Right. And I agree, and I think, yeah, I believe that on the tail end of that day, that you have to get unready from work. And nobody thinks about that, you know, unless you have a disability. And I think if people are conscious about what they do, when they come home from work, or leave their home office, it takes a while to do that, too. So all of those expenses can be taken up.
Naveh Eldar 8:35
And who decides that they need work? So I have a friend who has quadriplegia. And she was told that she does not need a personal assistant, although she does, like she pays for it out of her pocket. But she was told that she doesn't need that benefit.
Raymond Cebula, III, J.D. 8:51
Well, sorry, she does, you know, Social Security is the agency and that claims representative at the local office is making that decision. Now we need to understand that every decision that they make is an appealable issue. So if I see somebody who has quadriplegia, and somebody denying them assistance to get ready to work and ready from work, I'm all over that appeal. And that needs to be taken up. All you have to do is think you just sit back and think what does it take for this person with the ability to do this job, and any type of extra equipment that's not provided by your employer? Right, you know, would count. You know, and I've gone so far as to say, Well, I noticed you need a screen reader. You know, I noticed you need a magnifier. Yeah, let's see what would happen if we asked for a reasonable accommodation. And let's do the math differently with you paying for it.
Naveh Eldar 9:53
And if that person were to appeal do you recommend that they have legal support or do you is the appeal process is easy enough for the average person to do? Well, if
Raymond Cebula, III, J.D. 10:02
you read the book, it's, it's approachable. Okay? I spent my entire career representing people on these issues. And I think that it always be hooves somebody to get assistance, because you know what they say about the lawyer that represents himself, right? It's the same thing, you're always a better advocate for somebody else. And so the legal services agencies can do this, the protection and advocacy agencies have specific money set aside to do this. You know, and even some private attorneys, because legal services are shrinking up private attorneys have taken on. And I'm going to tell your friend with quadriplegia, that the deductions she's looking to get are more than offset by, you know, a $500 or $1,000 attorneys fee.
Naveh Eldar 10:53
Sure. And so let's, let's talk about some other programs that I know are out there, like Ticket to Work in the past program, and Abel, so let's talk about let's explain some of those to the people who may not know about them.
Raymond Cebula, III, J.D. 11:08
Okay, the Ticket to Work program is something that President Clinton signed on December 17 1999. It was in the afternoon, that's all I know. But, you know, he signed that program, and it changed a lot of things It was supposed to be, I think, I believe in the Ticket to Work program. Yeah. And I believe that it's a good program, I don't believe it's gotten the attention that it deserves from anybody. You know, and I think that, you know, what it does is basically seriously gives you a ticket to work, you can take that to an employment network to the state VR agency, and shop around, you know, st VR is going to give me XYZ, this employment network who's a private enterprise, is going to give me lmnop. And this employment network here is going to give me ABC, and that's just what I want, ABC. So you pick that, and social security agrees to pay the fees to the employment network, for services provided to the person with the disability who wants to work, it's a three way contract, and that now the person who is returning to work has an obligation to keep up with the plan and actively participate. Okay, so it's a great plan, it's a great way to get free services, you know, and some of the employment networks, I'm thinking of one in Maryland, there's one in Virginia are doing fantastic things with this ticket.
Naveh Eldar 12:55
And what isn't ABLE account,
Raymond Cebula, III, J.D. 12:57
and ABLE account, able a ble a better life experience. That's what the account is called. And it is truly about a life experience. It's a resource exclusion. There, right now, we're going to look at SSI folks who need that protection, they can have $2,000, if they're single, the ABLE account allows someone to save or have gifts from family members put into that account of up to $15,000 a year. And it doesn't count. Yeah. And the wonder of that is that the ABLE account really does provide an opportunity for a better life experience. You don't need to live on the wrong side of the tracks anymore. Because you can use that ABLE account to pay your rent, you can use that ABLE account to buy food, you can go on vacation, you know, you can have a better life experience. You're a worker now, right? That's what our goal is. So if you're a worker, you know, you get two weeks off, why can't you go to Disney World? Right now? You can.
Naveh Eldar 14:09
Are there any limitations to what you can do with the money?
Raymond Cebula, III, J.D. 14:12
Pretty much? No, that was the amazing thing, because those of us who have been in this business said, Wait a second, is this going to be like a special needs trust, that restricts that money to non basic expenses. And when they put the regulations out there it says rent it says food it says you know electricity, right? So you want that extra bedroom, now's your time to be able to get it.
Naveh Eldar 14:39
That's something that a lot of individuals don't know, especially if they if they're new to benefits that there is if you don't have an ABLE account, like you said there is a limit to the amount of money they can have in their checking account or in a savings account. Would you happen to know what's the logic behind that? Like, why did they limit people to $2,000
Raymond Cebula, III, J.D. 14:59
Well, someone did. 1974 and never connected it to the cost of living increase. That's, you know, that's what happened. You know, I mean to have this after, well look close to 50 years, and it's gone up once it went from 1500 to 2000. You know, I mean, it's out of touch, it's out of reality. And all we successfully do is keep poor people poor, right? The ABLE accounts almost a way out, you know, and hopefully that basic resource level that every time they've tried to do something, you know, it was my representative from Massachusetts, who brought the last bill to increase that and connect it to the cost of living, the Great Recession happened, you know, every time someone brings it up something but you know, we have a new administration now, who might be more amenable to listen to this, because the goal is not to keep people poor, the goals to try to get them back to work at what ever capacity, they can. You know, when I'm training, I tell people, you're a benefits planner. If your client wants to work and has capacity for 10 hours a week, yeah, they may still be on a reduced SSI check and have some earned income. But if you get that person to work 10 hours a week, you have succeeded, right? And people will not people, the Social Security Administration doesn't count that success, because the person hasn't lost benefits.
Naveh Eldar 16:40
And so let us talk a little bit about the plan to achieve self support or pass What is that? What is that about?
Raymond Cebula, III, J.D. 16:47
It's basically what it says it's a plan to serve to provide for self sufficiency. Now, you have to know that unlike all of the other work incentives, a pass is pretty much a very well orchestrated savings and spending plan. And with the goal that you leave the benefits roles. So that's the first step This is serious business here. You have to have a vocational goal, you cannot grow up to be a car, you can grow up to be a teacher who needs a car to go to work. Yeah, but the goal is the vocational goal. And basically, it allows you let an SSI recipient who is working can set aside their work income into the past plan. The result is none of that income counts. So they still receive a full SSI check. And they're saving towards a vocational goal. And that might be a two year degree, it might be a certificate program, you know, that will allow them to earn enough to zero out their SSI benefits and become independent.
Naveh Eldar 17:58
So we've been talking specifically about SSI. So let's get into SSDI. A little bit. So what are some incentives that are unique to SSDI?
Raymond Cebula, III, J.D. 18:07
SSDI has that same Impairment Related work expense, it will also allow you to do the pass, although this is a catch, which remind me to talk about, and it has things that are not in the other program called subsidies and special conditions. What we're looking at now, as we said before, are we is a cost to the worker, a subsidy is a cost to the employer. Okay. Now, if I have an impairment, such traumatic brain injury, that's a great one. Because, you know, my clients with traumatic brain injuries tend to not remember a lot. And I talked to them over and over again, well, if that requires me to have an hour's worth of supervision every day, so that I can work the rest of the day, and you have the same job, but get an hour a month, I'm looking at a cost to the employer. So look at my boss's salary, and multiply it by 19. And that becomes subtracted from your gross earnings. So that's an amazing work incentive that people don't even think about, you know, I I in training, I use the example of myself, my buddy Ed, and my buddy Michelle, we work at the grocery store can in the canned vegetable aisle, and we stocked that aisle. Now I am using a wheelchair. How do I get to the top two shells into the bottom? And how do I get vegetables to put on the shelves? Well, Michelle puts a couple of cases in my lap and I do the shelves I can do that. runs the pallet to bring it all out. Yeah. And we're happy we get it done at the end of the day. But you know, there are three shelves I can't stock. Right? So the extra help that I'm getting from other employees is also a cost to my boss and to this grocery store. And that can we can put $1 value on that. Yeah, and deduct that, from my gross wages. So there are there all the time. You know, I tell people, we all have them. You know, when's the last time you went out for lunch? And that lunch hour? turned into a lunch hour and a half? Did you get docked? Right? No, were you providing a benefit to your employer? No. But you got the money. So what's the subsidy? If people notice that they have them in their everyday work life, it makes it easier to find them. For somebody with a disability who's working.
Naveh Eldar 20:59
It is complicated, you know, like it, just the more you talk, there's so many, like layers and details that you need to be aware of.
Raymond Cebula, III, J.D. 21:07
It's the biggest onion in the world.
Naveh Eldar 21:11
So I had a person asked me why. And maybe you don't know. But you seem to know everything. So I should not assume that. If you get SSDI, for the first time, you just got approved for it, you still have to wait two years to get Medicare. So So what is the reason for that? And what are they supposed to do in this two years? Money?
Raymond Cebula, III, J.D. 21:34
That's the reason for it. Yeah, that's the reason for it. Yeah. It's purely financial, in those two years are going to add to the Medicare cost. And that's something that you should ask those people in the dome in Washington, not me. What do you do? If you do have a benefits planner? Or you're trying to do this yourself? Look for other options? What about Medicaid? You know, it's not like the average SSDI benefit is that far above state Medicaid levels. Okay. What about the Medicaid buy in program where a worker can pay for Medicaid and pay a small premium? What does Tennessee require? You know, New York requires one hour a month at minimum wage, and you're paying taxes? Yeah, I've set people up walking their parents dogs, right and getting paid for it. Yeah. And they can participate in the Medicaid buy in for that two year period until Medicare comes in. Yeah, and it, you know, with a planner, you can explore your options is always Cobra, but who can afford that? Nobody can afford it. You know, but there is a big gap. The good news is that, you know, the ALS folks, Lou Gehrig's disease, and the people with end stage renal disease don't have to wait that two year period, they get Medicaid right away. Okay, yeah. But we're looking at a situation where, you know, we could have people who have similarly disabling conditions are as severe. Yeah. And we need to wonder why did those two disabilities get picked? You know, and right. We have some other pretty tragic conditions out there, and why can't they get it right Medicare right away to, you know, we look at other disabilities that are as disabling as Lou Gehrig's disease and have the same type of life expectancy. Why aren't they there? You know, I mean, we're talking exactly the background of all of this is lobbying. The background of all of this is some congressman who has somebody in their family with this, you know, and sees it, you know, but I think it's time for us to let Congress know and see what people are dealing with and trying to go to work. And with no health care. I'm sorry. There's no excuse for that. Right. There is just no excuse.
Naveh Eldar 24:22
And do you know why some states don't have a Medicaid buy in program because not all of them do for the life
Raymond Cebula, III, J.D. 24:27
of me? I don't. I I'm really familiar with Hawaii, because I've done a lot of training there. And they've been trying for years. Yeah, and they just won't pass it. In Florida. They just won't pass it. I don't see why having a person with a disability, purchasing Medicaid isn't going to end up with a more successful and long term work experience. Right? Yeah. It's you know, The Ticket to Work Act that we talked a little bit about. That was the first time Congress ever recognized that people need health insurance to work. But yet, there's still enormous gaps. Yeah, and that buy in program if it keeps people to work, because you know, your BlueCross BlueShield plan is not going to send attendance to your house to help you get ready for work, you know, even if it were a compromise, and we said you can buy Medicaid to fill the gaps. Right, it would be better because people can't work without health insurance.
Naveh Eldar 25:37
Are there special incentives for students?
Raymond Cebula, III, J.D. 25:40
Yes. That transition age youth. I mean, they're close to my heart right now. Because I, you know, the more we learn about that group, you know, and the more we can explore those incentives, and recognize that we don't need to talk to a 16 year old, we're dealing with a family now. Right? And counsel the whole family, the better we are, but that's Student Earned Income Exclusion. I'm not sure the exact numbers for this year, but it will allow somebody who's a student under the age of 22, to deduct over 17 $100 a month in earnings. Wow. Yeah. Now, the annual total is still around $8,000. And I don't know, again, I don't know how to count, but it's easy to see, that's 12 times 1700. The goal is if you're in school, you're not going to be working full time. June, July and August, you could and deduct 17 $100. And that kind of exclusion, helps me in my goal, to take a transition age student and turn them into a worker with a disability, we can skip over the SSI recipient altogether. You know, why keep somebody in poverty when you can give this kid a chance to be a worker first. Mom and Dad right? That's a big problem. Mm hmm. Yeah. And mom and dad need to be counseled as well. So in California, they do paid work experiences for kids who want to transition to work. Yeah. And it's a wonderful thing, because you may be working for a month. Yeah, at $300 a week. And in that shorter time, even though it's delayed for two months, I can convince mom and dad that look it, you have a lot more money coming into this household, and nothing has happened to benefits or healthcare. Right? Yeah. And when the benefit starts going down because of work, then we bring little Joey over and say, Joey, Mom and Dad were depending upon that money to keep you sheltered, and house and bed. And now it's time for you to learn some financial literacy skills and step up to the plate, you should pay mom and dad this much in rent, you're still going to have a couple 100 bucks in your pocket.
Naveh Eldar 28:14
Right? And do you see because you train benefits counselors from all over the country, you and your program? Yes. Do you see many benefits counselors that are working out of the schools? More and more, you know, the
Raymond Cebula, III, J.D. 28:28
California California now has 125 working based in school systems. Okay. Yeah. And that's, you know, we had a group from Ohio that got pushed back because of COVID. But it's special ed teachers, and I'm dying to get my hands on them, you know, that's gonna be a great group to work with. But more and more, we're seeing school systems recognize that this type of system, you know, not only takes the burden off the special ed programmers, but it allows the families to get the financial counseling and make all of this mishegoss make sense. And then when they can experience that when they see that exactly what we tell them happened. You know, they're a little more relaxed. Maybe I don't want my kid to grow up in poverty. Right, you know, and stay there. Maybe let them go to work. Yeah. Yeah. And you can take kid who likes to skateboard can make a career out of that. Nope. In a skateboard shop if I need to, you know.
Naveh Eldar 29:37
So I'm just marking you down as giving your official endorsement for having more benefits counselors in schools, because Absolutely. So I have three amazing colleagues that worked directly with me that are my position across the state and they work for other insurance companies. And I emailed them this morning, and that was one of their questions and stuff. statements because they saw such a great need for it.
Raymond Cebula, III, J.D. 30:02
I'll have the insurance company folks come on over to we can teach them a trick or two.
Naveh Eldar 30:07
I will do that. So we talked about students. And you you also mentioned earlier how certain disabilities get certain exemptions. Can you speak to why that is because I also know that individuals that are blind have different amounts that they can make before impacts their benefits and all that. Yeah. What's the logic behind that?
Raymond Cebula, III, J.D. 30:30
Yeah, the there's no logic. It's called lobby, no, not logic. The blind folks out there do have special rules, special dollar amounts. And it's one of those things that is very political, and they have a very strong lobby. You know, I like to say that all of the other disability groups are fighting amongst themselves. Yeah. And the blind pugs just got together and change the world. Well, yeah. Those of us who were advocates were asked to challenge that, and the result of a legal challenge. So that allows the courts to say, Well, you're right, it's wrong that they have it. But we don't have enough money to do that. So nobody gets it now. Now, you're all equal.
Naveh Eldar 31:17
Yeah. And so yeah, I mean, some of these are just like, wow, kind of answers, right? Yeah. Yeah. Cuz because somebody there is no fair reason. It's like you said, it's just somebody got together and lobbied and we're a little louder voice so to speak. So something I want to make sure I get to is, how do you deal with people that have SSI and SSDI? Why? And if you can explain to people why that happens? Yeah,
Raymond Cebula, III, J.D. 31:43
that happens a lot. It's all too common in why it happens is that somebody's insurance benefits based on their own work records are below the SSI level. So let's say I worked, you know, I'm in Santa Fe now. So I work at a motel, changing rooms, getting them ready for the new guests, not a big paying job. You know, I think we just raised the minimum wage to 1050. You know, so it's probably somebody who's making 1050 an hour, if they have a disability, you know, they're making probably not working 40 hours, if they are they still not making a ton of money. Despite the fact that this is truly a social program. Yeah. And is the best of socialism, whether anybody's looking at it that way or not. The lower paid workers actually draw a greater percentage of their income than the higher paid workers do, because it's a cap, okay, you know, so, all of that said, if your insurance benefit under SSDI is below the SSI level, then SSI truly does become a supplement. Okay, and brings you up to the SS eye level plus 20, because of the math. So that's why you end up in that situation. When you're talking about returning to work in that situation, you're treated very, very carefully. Because you have two different benefits, you have an SSDI benefit and an SSI benefit. You have two different sets of work incentives, the SSI benefits are controlled by the SSI work incentives, the SSDI by another set of work incentives, and they don't talk to each other. So you need to be very cognizant of what's happening. For instance, if you work long enough, and you're you lose your SSDI because of work, it is very likely that your SSI benefits go up. Gotcha. Yeah. You know, and then we have to deal with that. So we're talking to plans built into one, but that's the person who needs benefits counseling, and little booster shots along the way, you know, because it does get very confusing.
Naveh Eldar 34:17
Can you explain what it is? I'm throwing out numbers. That's why I need you to explain it. 1619 a, and 1619 B, what is that?
Raymond Cebula, III, J.D. 34:27
That is a fabulous program. Again, I mean, some of this stuff is just absolutely wonderful stuff. That is, you know, hiding there in plain sight again, you know, 1619 A is really unimportant if you go and it's a legal explanation, but I'm going to give it to you. Okay. The statute for Social Security says I cannot work at Substantial Gainful levels, basically making it illegal to pay somebody benefits if they're working at that level. So how do you continue to pay an SSI recipient? Who works more than that? Okay, you create a section 6019. A, yeah, it was created when the Ticket to Work came out. And it was these are special cash benefits for disabled people who work. You know, it costs about 1700 16 $150 to cash out of cash, you're still gonna have health care, but your cash is gone. That's above SGA. So how can you pay somebody? You create 1619? a, no magic there. Don't even think about it. Don't think about 1619 B, you got to think about 1619 B is health care for workers with disabilities. So now we're talking here, you have worked yourself out of cash SSI. Yeah, you then fall into 1619 B. And the states could set their own limits their thresholds, we call them. And yeah, I don't know what Tennessee's is. But uh, you know, Connecticut always has a fabulous one. Connecticut's has been over $60,000. Right. And you can then work and continue to keep Medicaid free of charge, until you reach that threshold. And your friend with quadriplegia. I'm going to pull her back into the discussion. Yes, somebody who has expensive disabilities, expensive need for personal care attendance. If you say personal care, attendance, and durable medical equipment, you're talking expensive items. So if your friend were to hit $60,000, and be told your Medicaid is now going to terminate, she could say, wait a minute, I'm not average, I'm expensive. And can you figure out an individualized threshold for me? And when they count her Medicaid expenses, rather than the average? We've seen people with thresholds over $100,000. Nice. Yeah. So that has to be
Naveh Eldar 37:14
that has to be a request, obviously, that you specifically make. And again, I might ask the question I asked earlier, yeah. Do you recommend that she gets assistance in making that request? Or is that something that she can just ask for?
Raymond Cebula, III, J.D. 37:28
That's something she can just ask for. She just needs to ask to have an individualized threshold determined? And then it's just a matter of having Social Security, put the numbers into the system? And if it works, it works. If it doesn't, if they have the right numbers, they're right.
Naveh Eldar 37:45
The rest of my questions are kind of off of specific incentive. So before we go there, do you have or Can you think of any incentives that I may have missed? I think we we hit the April pass Ticket to Work. 1619 b, are there any other major incentives?
Raymond Cebula, III, J.D. 38:03
I think so. I think it's one that is Yeah, much like the subsidy and SSDI special conditions. In the SSDI work world is something that are very rarely used, and they need to be, yeah. Again, early Impairment Related work expense, an expense to the worker, subsidy and expense to the employer. Well, what about state VR, whose provides a job coach? That is not an expense to either the worker or the employer, but it is a valuable work and work support? Right? What we can do is say, okay, Joey has 10 hours a month in job coaching assistance provided by VR, we can take the 10 hours and multiply it by the workers wage and deduct that from gross income. What? Absolutely. I don't know. The one thing I can tell you is I don't make the rules. Right. I don't break the rules. But I stretch as far as I humanly can, you know, that adds there. Yeah.
Unknown Speaker 39:19
Wow.
Raymond Cebula, III, J.D. 39:20
How many people have job coaches that you know, who aren't claiming that? Right, exactly.
Naveh Eldar 39:25
Unbelievable. Okay. What's the name of that? Again,
Raymond Cebula, III, J.D. 39:29
that is a special condition, special condition that exists when neither the worker or the employer are paying for a job, sport.
Naveh Eldar 39:38
Very nice. Very cool. Okay, so now I'm getting into some more just general questions. For example. What do you say to people who are worried that they're going to be under medical review more frequently if they go to work? Well,
Raymond Cebula, III, J.D. 39:52
I'm going to tell you that that's one of those urban myths, you know that I've been trying to squish for 40 years. But the streets louder than I thought, I'm going to tell you that. That isn't necessarily true. Medical reviews are scheduled, you know, DDS the state Disability Determination services, that makes the disability decision, we'll review a medical condition every 752 years, you know, you're fit into a category, and your review will come up in five years. Right? Yeah. Going to work does not cause that going to work causes a work review. Okay, yeah. And what that should be, is a work review that makes sure you're getting all of the work incentives are entitled to, it's generally just a way to have social security very late in the game, apply all of those wages to your records. Oh, yeah. So it's not going to cause a medical review in just the opposite. If you have a ticket to work, you're using it. And you're, you're keeping up with your plan, you have timely progress is being made. None of the medical reviews happen. They're suspended. You know, while you're using the ticket, you know, it, it's gotten so that even folks, you know, SSI folks don't have that SGA test that stops because of the math involved. So we've protected them from work reviews that just end their benefits, which should in the past and have led to medical reviews, they're protected from that. And in order to bring the SSDI population up, if you have received cash benefits for 24 months, they don't have to be in a row, but 24 months, you cannot have a medical review started just because you got to work.
Naveh Eldar 41:58
What is the most and it may be the special conditions, but maybe one or two, the most underutilized work incentives and your opinion
Raymond Cebula, III, J.D. 42:06
subsidies, special conditions. And I think for the SSI population, Impairment Related work expenses, because they have Medicaid, and they tend to pay for a lot of things like your co pays for your drugs, or something like that. I just throw a challenge out there to all the benefits planners in the country and say, talk to your client, let your client tell you what their life is like. And you're bound to find one.
Naveh Eldar 42:36
Yeah. Is there any difference for people who are self employed at all
Raymond Cebula, III, J.D. 42:42
big time, self employment is an entirely different world. Okay. And it's basically, the last time I went to a self employment training, it was three or four days, what we're talking about, first of all, is, you know, when you're looking at ss, I, you know, you need to be making money, right? You know, if you're talking SSDI, you can either make money, or work for 80 hours a month, if you work 80 hours a month, you might be considered to be doing work activity that would affect your benefits. And we all know that if somebody is opening a business today, you can wait a year and a half of two years, as a matter of course, to start making profit, and even paying yourself you know, right. So we're also looking at net earnings from self employment. So all of your business expenses come off the top, you know, if my business brings in $3,000, this month, I may be shouting the joy, but when I deduct the cost of inventory, the cost of rent, you know, the cost of insurance, you know that, that $3,000 can quickly turn into $500. Yeah. But I think it's the nature of that whole notion of being self employed, that makes that separate and distinct. And those people definitely need benefits counseling, assistance from the service corps of retired executives to put a business plan together. Yeah. All free services that are hanging out there waiting for you.
Naveh Eldar 44:29
So we may be reviewing something isn't our answers at this point. But what would you say as you know, when I emailed you and before we started recording today, I told you that one of my big motivations for speeding up my release of or interviewing you was, you know, individuals that have a capacity to earn a lot of money, right. So whether they be you know, whether they are blind or whether they're quadriplegic, but like they can have a master's degree a PhD, but yet, we still See that, that 70% of people with disabilities don't work. And lots of things I kept hearing from people is because they were afraid of losing benefits or that. So what do you say to people who have that high earning potential?
Raymond Cebula, III, J.D. 45:14
Stop listening to the streets? You know, the basic thing is, when if you're looking at, you know, making 60,000 $70,000 a year, or living on $2,000 a month, you've got no choice there, you do have a choice, you can choose not to, you know, but and that that's my game. Here is the facts here. Here are the facts there. It's your choice. Your extended Medicare is going to last seven and a half years after you finish your first trial work period, right, seven and a half years. Yeah, that gives you a lot of time to be a worker and still have health care. Now you may be paying for some of it. Yeah, and a benefits plan, it would build that cost into how much somebody needs to earn. You know, if you want to live on 50,000 bucks, you may have to earn $70,000. Yeah. And some people can do that. You know, Stephen Hawking's had a disability, and he was making a lot of money just for the Big Bang, you know? So, you know, I mean, there are people out there who could consult, and even if they had consulted a day, a week or $10,000 a month, right? Yeah, so the question is, what's to risk, you do have your trial work period, you do have an extended period of eligibility. So you can truly test your ability to pull this off, and then get back on. And we now have expedited reinstatement that goes on for five years after you've been terminated because of work, right? That allows you to say, hey, my disability stopped me from working or I dropped below that substantial gainful activity level, turn the benefits back on, that process is new to and that's a big work incentive. The question is healthcare. How do you do that? What people don't quite understand is that when you are disabled, you still have to remain your disability status. So if you are disabled, according to Social Security, at the end of seven and a half years, the worst thing that's going to happen is that you got to pay for Medicare. Gotcha. You know, there's, there's nothing to lose. This is a lifestyle choice. You know, do I want to live on 36,000 bucks a year? Or do I want to live on 70?
Naveh Eldar 47:45
How did Cornell get involved in training people across the country for benefits counseling?
Raymond Cebula, III, J.D. 47:52
Well, you know, I, my former supervisor, Thomas golden, was somebody who worked very hard, you know, with Susanne Daniels, who was an Associate Commissioner, it's a security for work to try to get that Ticket to Work Act passed. Part of that. Yeah, I mean, it. It's wonderful when you do something like that, you put this major plan together. And not only are we getting people with disabilities out of poverty, but we're showing everybody else who works that oh, this is normal. It's okay. Yeah, so we're opening the eyes of the workforce, which I think is a brilliant thing. So Cornell got involved because of Thomas, you know, myself, my partners in crime when we were in legal services, we're doing benefits planning, because we just got sick of keeping people in poverty on SSI. We didn't know what we were doing. We didn't call it benefits planning. You know, we just help people use the work rules. And then with the Ticket to Work acts, Social Security, had, they were required by law to provide benefits planning services, in which they still do, you know, they still do with the 1999 levels, they were required to, you know, but they still are doing that. And that's a very important thing. Cornell got involved because we were part of the National Training Center, the curriculum, and the slide decks and all of the position papers and all of that were done by VCU, Cornell and St. Joe's, Missouri. And that's how Cornell got involved. It was Cornell's choice to stay involved. Okay, after the three Regional Training Centers became a National Training Center. Yeah, because as that money stayed the same and costs went up. We recognize that you can't do this on a priority basis, you know, that there needs to be better Benefits planning for everybody. So we don't have any restrictions from social security as to who Cornell planners can provide services to, you know, if you would have come into the office and say, Hey, what's this return to work stuff? I could talk to you. Right now I couldn't if I were working for Social Security, because you don't have a job, or are about to get one.
Naveh Eldar 50:23
Where can where can people find information? If they're looking for it? Where can they get like, maybe they're listening to this? And they're like, okay, I, I think I understand it, but I want to, I want to read it, I understand it better if I look at it, or how can they find a benefits counselor in their state?
Raymond Cebula, III, J.D. 50:39
Okay, this, this is another good thing, that Social Security has their websites fabulous, by the way, regardless of how many times they've sued them, I love that website. And if you go on to ssa.gov, forward slash work, you'll get to or choose work one or the other, you will get to their help page. You can go into that help page, put your zip code in and find a benefits plan that serves your state. Very nice. Yeah, if you want more information, Social Security sponsors what's called wise events every month, and they are directed at the beneficiary community to tell them, you know, what's going on, you know, they range from, this is what your benefits are. And these are the work incentives to if you're a vet, this is the session for you to get information. And it always ends with there's a benefits plan are out there for you. You have a return to work team, you just need to put it together. Gotcha. Yeah, so there's a lot of stuff like that. And, you know, the, the Cornell website, the VCU website, you know, if you're in Wisconsin, the University of Wisconsin website, some of the state agencies, you know, California has a great website, you know, with all this stuff on them.
Naveh Eldar 52:06
So the help and the resources are out there. There shouldn't be too too difficult to find. Not at all. I usually ask a few personal questions. And so my personal question for you is kind of actually related to what we're talking about. So you don't know me from Adam. But when I reached out to you, you immediately said you would love to do the podcast, because your life's professional work has been getting this information out to people. So what drew you to that? Why did you Why have you dedicated your career to this work?
Raymond Cebula, III, J.D. 52:44
You know, it's a it's a long sordid story. You know, I went to undergrad, got a BA in history, I was a family project, I had two sets of grandparents chipping in my parents and me with the student loans at work. Yeah. And then I decided I was going to go to law school. Yeah, I was a first generation law student, as a college student in my family. And when I said law school, my father's force dropped right out of his hand. But my grandparents, my parents, and I took out loans, we all stepped up, and it happened. And part of my law school experience was clinical work, you know, and we did it in a legal services setting. And I immediately fell in love with it, you know, and thought to myself, I was a family project. I really am feeling an obligation to give back. Yeah, and to the extent that I did every clinical and internship and externship that I could, helping all kinds of poor people, right, but focus on the disability population, because that's where I found the most reward and the most benefit. And again, I started, you know, I actually got a fellowship from Howard University, and they sent me up to Iowa, you know, from Boston to Iowa, culture, shock, big time. But a lovely place, I had a ball in Iowa. And, yeah, there, you know, I continued to do 50% of my caseload. public benefits, okay, SSI, SSDI, doing hearings to get people onto benefits, going to court to get benefits, you know, class actions, the whole bit, carry that over to my return to Massachusetts, and then I realized that I am helping people, but they're still living in poverty. And that was not why I signed up for this. Okay. And truly, you know, as many times as I can repeat it. It's the truth. If you want to get out of poverty, you got to get a job. Yeah. We are going to, we are living in a society that says, If you can't provide for yourself, you're going to be poor. And I've always thought to myself, this country will not be judged on how successful it is, it will be judged on how we treat those less able to take care of themselves. Yeah, and I believe that sincerely. You know, I just actually realized a couple of weeks ago, as we're getting ready to start our semesters over again. Yeah, the workplace issues, you know, burst upon me, it was like, not only are we helping people get to work and get out of poverty, but we are opening doors to workplaces that never had people with disabilities in the right. Yeah. And when I realized that I said, you know, as I reached the sunset of my career, you know, it's like, that's good. You know, that's a good thing if we can normalize that. Absolutely. No, that's a great thing for me to do. And if I had any part of that, I'm going to retire in happy land. Yeah.
Naveh Eldar 56:11
You're You're awesome, right, man, I really appreciate you. I mean, I knew it before we even spoke just through our emails. So I'm so so very excited that you got to come on and share with us.
Raymond Cebula, III, J.D. 56:23
I'm excited you gave me the chance.
Naveh Eldar 56:26
And and good luck with the new semester and hope that everybody gets vaccinated. I know that may be controversial to say, but do it and let's get back to normal hopefully soon.
Raymond Cebula, III, J.D. 56:37
Well as the I've been recently called the renegade, so as the renegade I am going to tell you all get vaccinated. I already have shot one in my arm.
Naveh Eldar 56:47
Awesome. All right, thank you so much. Today's information was a high overview. I encourage you to seek out individualized benefits counseling and planning from a certified professional in your state. I put several links in the description of this episode to help connect you to the information discussed in this episode, including the SSI thresholds spoken about earlier. Make sure to subscribe to this podcast and leave a review and give a star rating if you listen on Apple podcast. In the next episode, I have my first international guest, Gabriel Mayer, who called from Sao Paulo, Brazil. Gabriel worked on sports initiatives that touch the entire world. He has worked with the Paralympics the United Nations and started his own program in Brazil, as well as being recognized by the likes of FIFA. He is impressive and passionate and will speak about the work that he has done around the world. Make sure to return for that episode. See you next time.
Transcribed by https://otter.ai