Podcast Summary:
This parent-focused webinar demystifies benefits so you can plan with confidence. Benefits Navigator Marcy LaCroix explains how SSI and SSDI work, why “logic” often feels missing, and how to use work incentives so your teen can try jobs without losing critical supports. You’ll hear when and how to apply, what documentation Social Security looks for, and why the age 18 redetermination matters. Marcy clarifies the difference between income limits and asset limits, how living arrangements affect SSI, and when Medicare and Medical Assistance can work alongside employer insurance. She also covers student-friendly supports like the student earned income exclusion, plus paths to keep eligibility if earnings rise. Expect practical guidance on reporting wages, avoiding overpayments, and handling denials and appeals. Throughout, SSB’s Transition Coordinator Shane DeSantis underscores that work is possible, help is available, and you’re not alone. Parents leave with next steps, trusted resources, and real-world answers.
Links mentioned in the episode:
To find out more about the services provided at State Services for the Blind, and what they can do for you, contact Shane DeSantis at shane.desantis@state.mn.us or call Shane at 651-385-5205.
Full Transcript
{Music}
Jeff: Welcome to blind abilities. I’m Jeff Thompson. Parents of students, teens and young adults attended a webinar from State Services for the blind featuring Marcy LaCroix, and she’s a benefits navigator. This is an extensive podcast episode, and it is also a wealth of information if you’re looking into navigating your benefits. Parents asked some great questions, and Marcy was right there to help guide them so they can better their understanding and knowledge of navigating benefits for their children. So without further ado, here’s transition coordinator Shane DeSantis and benefits navigator Marcy LaCroix. We hope you enjoy.
Marcy: Work is possible and should be part of the conversation early on, and that doesn’t mean work is required. It should just be part of their conversation. And when it comes to benefits, all benefits not just Social Security, but things like Ma general assistance. That knowledge is power. Understand what benefits you have so then you have an increased likelihood of understanding what they do, and you can get the most out of those benefits.
Shane: Again, thank you everyone so much for joining us tonight. My name is Shane DeSantis. I know I’ve met a good handful of you joining us tonight. For those of you I have not met yet, I am the transition coordinator with State Services for the blind, and I work with all of our counselors and helping provide services to our students. I put together some group activities help ensure all of our students have access to our program. I work closely with teachers in the school setting to ensure that we’re bridging the gap between education and state services for the blind. With that, we’re going to dive into the topic tonight. Feel free to come off mute and interrupt us and ask a question. Ask for clarification or type a question in the chat. We’ll try and make this as open for dialogue as you guys would like it to be, while following Marcy’s slide deck. So with that, I’m gonna hand it over to my coworker Marcy.
Marcy: My name is Marcy LaCroix. My title here at SSB is Benefits Navigator. And what gives me that title is I have a certification. I have training, which was quite a lengthy, intense training that gives me initials behind my name of CP, WIC, which is community practitioner work incentive CP WIC. What do I do? Community partner, work incentives Coordinator and I received my training through Virginia Commonwealth University, and that training dives deep into social security and understanding work incentives and understanding how work and Social Security go together where there is no logic. So that is the one thing that I want to really impress upon you. If you are feeling overwhelmed by Social Security, by benefits in general, medical assistance, general assistance, all those things, what does the county do versus what does Social Security do? You’re not alone. And it’s 1,000% normal because logic is really difficult to find in all of these things. So hopefully tonight while I can’t give you logic, hopefully tonight I can give you some pieces of information that start to put the puzzle together. But as Shane said, please, please feel free to drop a question in the chat. Raise your hand. Come off from unmute. It’s important to me that tonight’s information is meaningful for you. If it’s not, I’ve really not done my job well. So with that, I’m going to share my screen and everybody cross your fingers that technology is our friend tonight. All right, so what you’re seeing on the screen is the evolve employment. And our tagline for the evolve employment, which is a grant that is currently in place at SSB, is empowering talent and elevating workplaces. And I do have to give this disclaimer that the Department of Education requires us to give. We are a workplace grant. Our job as we explore bringing more people into the workplace and reaching a really a livable income, competitive, integrated employment. And I see that Jane asked, Will we be emailing the recording of the meeting afterwards? I am not entirely certain how the recording will get to you, Shane, perhaps you can answer that, but I will be sending out the PowerPoint so you’ll have two things to refer to.
Shane: We do have Jeff Thompson with Blind abilities. It’s a podcast that I encourage you guys to look into and share with your son or daughter if they haven’t come across it already, but tonight we are recording just audio and Jeff will be sharing that on the Blind Abilities podcast, and I’ll make sure that goes out to everyone who joined tonight, along with Marcy will share the slide deck.
Marcy: Awesome. So let’s dive in. What is Social Security and what are some of the eligibility requirements? It’s just kind of surface where we’re going to go. We’re going to go a little bit deeper. But again, if it’s not making sense, if there’s something that you want me to clarify, I will do my best. There are times where there’s just so much information, I don’t recall it all, or I don’t have the specific details, and it might be something that I have to send out answers in the email, which will include with that PowerPoint and recording, if there are some, if there are general questions that I can provide more information on, I will happily do that. I learned just as much from my audiences when I’m presenting as. Hopefully you learn from me. All right. Some of the questions that I got were around eligibility. And what does it mean to get Social Security? How do I do that. So let’s start with this piece. And this is where we start to see some of the complexity. Right. So hang with me I’ll try and pull out the threads and make some of it fit a little better as we go along. But the first criteria is that someone is unable to earn what’s called substantial gainful activity. Sga and when we start talking about Social Security, you’re going to hear SGA a lot because it’s a huge marker.
And when Social Security is making a determination about a lot of things, they use SGA and it’s a decision. It’s a decision that includes a number in 2025, and this generally changes every year. It’s been many, many years that it hasn’t changed. It’s gone up even if it’s just a few dollars every year. So for this year, that level of income is $1,620 a month. But if you are blind and this is statutorily blind according to Social Security, then it’s $2,700. So there is a difference when we’re talking about an individual who has a disability of another sort other than blindness. The next step is that Social Security and their disability determination services, it’s a department within Social Security has to say that a person is medically determined disabled. And when you get this PowerPoint, there’s a link there to dive into that a little bit more. But what they’re looking at is, is the person working. Is their condition severe. So severe means does it limit their ability to do work related activities like lifting, standing, walking, being able to remember things. And it must last for at least 12 consecutive months, or in a very dark reference result in death. So things like end stage renal disease is something that unfortunately may result in death. And that’s something that’s on that list.
And it is a really long list. And there are conditions on there like special conditions, they call them, that move the system along a little bit faster because they say, oh, this is known and we don’t have to do any more looking that if a person has this particular diagnosis or this particular disease, that we’re going to expedite the process. So that’s that list. This is the third question is the condition found in the list of disabling conditions. Then they ask questions about work. And this is specifically for adults 18 or over. I include this in here because I’m assuming that many of you are transition age that 18 to 22, maybe even 24 year olds. And they’re in that period of time where they’re graduating from school, they’re making plans for their adult life. You’re trying to support them in that, to live their best life. So work often is part of the conversation. So Social Security is one that introduces that, in fact, their criteria demands it as an adult. They demand that they ask the question, can they do the work that they did previously? If it’s someone who has worked in acquired a disability, can they do other type of work? So if perhaps you were a construction worker and you were injured on the job, can you still do that type of work or with a little bit of retraining, could you do something similar, like could you do an office job or can you not do that type of work at all? Now for those under 18 they look at functional limitations.
Those are evaluated. So how does this condition how does this disability impact their daily life? Can they prepare their own food? Can they eat with or without assistance? Can they navigate some sort of transportation? Those sorts of things that you’re likely familiar with. If you’re already working with SSP or working with another VR type program? All right. When we add blindness in there, what Social Security is looking for when they are referring to statutory blindness is that the vision can’t be corrected to 20 over 200 in the better eye, and or the visual field is 20 degrees or less in the better eye for a period expected to last at least 12 months. Now, when we have young people who’ve not worked and this is an SSI benefit, that 12 month period doesn’t apply. They don’t look at that piece. So let’s talk about the differences. And I fully recognize that is a very high level doesn’t give a necessarily deep details, but it’s a start to try and understand the complexities of what Social Security is looking at. And I know there’s always the question of it seems like everybody gets denied the first time that they apply, and I understand how frustrating that is.
There’s the complexity of the process is part of the reason for that. But let’s look at the differences. We talked about SSI. And so SSI is that Social Security income. And this is a separate pot of money if you will. Then a title two benefit like SSDI or a Widower’s benefit or a childhood disability benefit, we’ll get into that next. SSI is a financial needs based benefit. It’s meant to pay for basic needs. It’s meant to be almost a replacement or a supplement to no income or very low income. So that is why there’s a resource limit or an asset limit of $2,000, meaning in the amount you have in your bank account, you can’t have any more than $2,000. And, you know, of course, that’s different. There’s other assets that a person may have, but I’m just using bank account as an easy example. There is a maximum amount that can be received for SSI for 2025. That amount is $967. So if you take into consideration that $967 is meant to pay for basic needs food, shelter, clothing, that’s below poverty, right? So we don’t want our kids. We don’t want our loved ones, our neighbors living in poverty like that. Which is why we talk about work and the work, the fact that work is possible, why we talk about work incentives, why we have something like benefits planning.
Marcy: It’s why my position exists at SSI, and there’s more and more support around navigating the complexities of Social Security. So SSI also when they consider the assets, but they also consider persons living arrangement. So if your young person lives with you, they take that into consideration. Are they paying their fair share so they could be living with you? But if they pay rent to you, if you have a rental agreement, they could be paying their fair share. If they’re living in a roommate situation, if they’re living in a medical facility, a group home, even an assisted living type situation, social security considers that. And I see that Jane has a question don’t they cut your SSI if you work, even if you earn under 2000? So I want to be clear the asset is not about what you earn. It’s about what you have saved. And so if I have $2000 or $2050 in my bank account, the $2,050 is going to disrupt my SSI payment in approximately two months, because I’m over assets when it comes to if I’m earning $2,000, it’s a different story and I’ll talk about how work impacts. Does that help differentiate between the two?
Speaker4: Uh, yes, that does help a little. The reason why I ask is just my son has just gotten on SSI since last year, and he had this part time job for like, I think it was like five weeks in the summer. Sure. Where he got paid very little, but we got a letter saying that his SSI payment was getting reduced because of his work. Yeah, that’s kind of where my question comes from is he doesn’t have like over 2000 in his account, and he was only making like I think $200, sure. But his payments still got reduced. And so that’s why I was wondering.
Marcy: Yeah. So that makes sense. When someone is over assets, the payment will be reduced to zero. When someone is earning a wage, there’s a calculation. And I’m going to show you that later on how that works. Okay, because it can be confusing when you’re like, wait, what calculation? Who determines that? And I’ll show you that. I’ll also give you some resources of where to find more information. If you’re like, Marcy didn’t make sense, I need to see it visually. There’s some great resources through the Disability hub.
Speaker4: Yeah, I just had a concern with that because he was interested in, like, working part time through the school year. And I just thought, you know, if he makes even more than that, are they just going to reduce his amount? And so I’ll wait for you to kind of go over that with us.
Marcy: All right. And if I don’t answer your question, then you just pop that in the chat or unmute and let me know that I didn’t quite hit the mark on there. Happy to try again. Okay. Asset limits or resource limits person’s living situation. And there’s that max benefit for this year. It’s 967. I have not heard what it will be for 2026 yet. I expect that to come out in October and that will be available. I don’t know, we might pop it in a in an SSB newsletter to keep everybody informed, but maybe we’ll have a benefits section, but then the next one is that it provides a benefit amount that is calculated. And this is what Jane and I are talking about. It’s calculated by considering the unearned and earned income. There’s a formula that they use to determine how much someone’s benefit is going to be, and they do that every month for SSI. Unfortunately, there’s a lag. So the work that I do as a person who receives SSI in September gets reported in October because I have to report the whole month of September. So I can’t do that before the end of September. I have to do it in October. So then the check, the SSI check that’s impacted is the what check I get in November. So I have in here a couple down later. The income and asset tests are done every month. But there’s a two month gap and that’s what that is.
So I report for this month. After the month is over, Social Security has that month to do all their calculations. And then I get the check that reflects September’s work efforts in November. And this is where the reductions can happen. And again, we’ll talk about those. But the general idea is that for every $2 you earn from wages that you earn, your SSI benefit is reduced by $1. So it comes by half. What that means is that people who are on SSI are always better off working. We can’t say that for every benefit it is a decision for other benefits. But for SSI, someone is always better off working. Now does that mean that it’s always easy and that things don’t get missed by Social Security? No, which is where attending informational sessions like this and using the resources. The more you know, the more you build your personal capacity and hopefully pass that along to the young people in your life who are receiving benefits, the better off people really are. Which is another thing that I hope, if nothing else, educate yourself. Try and help your kids understand as much as they possibly can about the benefits they receive and how they work as well. One last thing on SSI is that every year they’re going to do a financial redetermination. What they’re looking at every month is to determine how much your check is going to be.
Marcy: But the annual financial redetermination is to see if you’re still eligible. So it doesn’t make a lot of logical sense, right? If they’ve been looking at it every month for the entire year, why do they need to look at the whole year? They’ve already got it. But that’s what happens. All right. Let’s move on to SSDI, which is Social Security disability insurance and insurance. Meaning if you work, if the young people in your life are working and we’re paying taxes, especially those Social Security taxes, federal taxes, we’re paying into this system, this is the one where there’s a lot of concern and question, because this is the pool of money that is also retirement widows or widowers benefits. It’s the same pool of money. It’s based on an insured status. That insured status is referring to the fact that a person worked and has enough credits, and those credits are determined. How many you need is determined by your age. For a 20 year old, they must have worked a year and a half during the last three years. Now, for someone who’s 50 like me, they look at the last five years and I just blanked on the number of credits. But it goes by age and we can earn up to for a year. A credit is earned when we earn wages of $1,810 is the equivalent of one credit, and that changes every year as well.
So we earn credits. We have to earn a certain amount depending upon our age and we have to have paid Social Security taxes. So if someone is working for cash under the table, unless they’re paying taxes on their own, they’re not paying into the system. And so if they acquire a disability or their retirement amount when they reach full retirement age, they’re not going to be able to pull or can’t pull as much from the system. All right. Jane is asking, can someone start an SSI because they never worked, but then qualify for SSDI later as they start to work? Absolutely. Someone can also be receiving SSI and SSDI at the same time. Talk about complexities and no logic. I did not put anything in here to dive into that tonight. It is a relatively unique situation, and that would be one where I would encourage reach out to myself or Shane that you have questions about that or disability hub where they also have work and benefit staff and have a fair amount of training themselves. Okay, I shared that SSDI is a title two benefit and there’s specific benefits under here. And the one that’s I thought was relative for tonight is the childhood disability benefit. This is for folks who are over age 18, and it’s based on a parent’s work record, provided that the individual who’s over 18 had their disability prior to the age of 22.
Marcy: So, for example, I have a niece who has Emanuel syndrome. She was born with it. She will be eligible for the childhood disability benefit when her dad retires, if he becomes disabled or if he passes away. So same will be for your child’s when you retire. If you should become disabled, if you should pass away, your child may become eligible for CDB, which is a title to benefit. Now, if it’s not a huge amount, let’s say it’s only a couple hundred dollars. For some reason, that is a situation where someone may also continue to be able to receive SSI. It has to do with that countable income is how someone receives both. For someone to receive CDB, sometimes it’s called DAC disabled adult child. They change the name of it quite a few years ago, but in manuals and stuff it still exists as DAC. For some reason it’s not required that they have the insured status because it’s not on their work record, it’s someone else’s work record. It’s a parent’s work record, and that’s the only way you can receive it is if it’s your parent. It can’t be a sibling, it can’t be a grandparent. We don’t get to decide. It has to be from a parent. And the amount is based on for whether it’s CDB or SSDI. The amount is based on the worker’s taxable earnings over their work period, over their work life.
It’s averaged out. If you’re around my age 50 ish or older, you may remember getting in the mail. Social security every once in a while would send you this pamphlet. It was probably green and white and had if you were to retire now, or if you receive Social Security now, disability now, your amount would be this. That’s kind of it’s a summary of this taxable earnings what you might get. Okay Emily has asked who helps with KDB. My child qualifies for this as she has a deceased parent. It’s an application with Social Security asking them to look into that. So Emily, my first step would be to call Social Security and ask them to review. I don’t believe that it’s a full standard application. I don’t believe it is, although they’re still going to have to look at disability determination and that sort of thing, because that’s one of the requirements. But there’s this thing called survivor’s benefits, too. So there is some information in there I’m not fully aware of, but that would be my first step. And my suggestion would be to call Social Security. If you want support in calling Social Security because you’re not quite sure what questions to ask. This is where I would suggest calling the disability Hub and explaining what you’re after and asking for support to do that, and hopefully they have someone available at that time.
Marcy: Or you can set a time because waiting on hold for Social Security, that’s difficult. I acknowledge that I’ve spent many hours listening to that extremely loud hold music. It may be quicker to go in to your local social security office, but certainly the hub is there to offer support with some things. They can’t always support everything, but they may also be able to help you develop the questions that you specifically might want to ask based on your situation. Does that answer everything? Emily. All right, I see. Thumbs up. Barry asks, do both parents need to be retired. No, they do not. They do not. It’s based on one person’s record. Now, a person could receive benefits off from two parents, but it’s not required that both are retired or that both have deceased. It would be actually two separate benefits if both parents say one was deceased and they were receiving survivor benefits and the other one retired, it would be two separate SSDI benefits to add more to the complexity. Right. All right. And Jane, is there a better way to reach Social Security? Oh, I so wish I wish I had a lifeline to be able to send you that. My suggestion would be use Disability Hub, whether it’s their website or their chat option or their phone call, to try and get your question answered and or to talk through questions that you know.
Create your list. Create your agenda so that when you go in or when you call that you know what you’re needing to do, and hopefully that reduces the amount of time that you spend with the person. Once you get off hold, or reduces the chances that you get passed from one person to another. Because nothing is more frustrating than waiting on hold for an hour and a half and getting told that you’ve called the wrong person and getting disconnected in that transfer. Not that that’s ever happened to me more than a dozen times. Jane’s asking is the Disability Hub an independent organization part of Social Security? Independent. It’s independent of social security. It’s independent of the Department of Human Services and your counties. They are grant funded as well. And they were designed to provide unbiased support because of situations like this where things are tough and we need that support. And I say that maybe I sound a little bit like a walking billboard. But to help you understand that, I worked for The Hub for ten years. So I’m familiar with everything that we did, from answering phones to chats and how we provide service, how they provide service. I still say we sometimes, so I have a lot of pride in what they do and fully believe that while they might not have all the answers and they might not have them for you immediately, they certainly will make every effort to get you what you need.
Marcy: Okay. Questions about SSI or SSDI? Hopefully I hit everybody’s questions in the chat. Jessica is asking, is this all something that should wait until they are 18? Excellent question. Short answer is no, but I’m going to dive into that a little bit as well. So application information that you need for a social security application. Basic information much like you would expect medical condition documentation. So the providers and practitioners that have supported and treated and diagnosed a person, the prescriptions that they’re taking for that, especially for that specific disability that you are trying to demonstrate to Social Security. Test results. So if there’s a mental health diagnoses, a diagnostic assessment, if it’s blindness, of course you want something from your eye doctor or your surgeon. If it’s cancer oncology, you get the picture. And then documentation from those providers describing the effects on daily life. And this is especially important for young people because remember, they’re not looking all at work yet. They’re looking at functional limitations. So this is a reason people can get denied initially, is that the documentation doesn’t reflect the impact that the disability has on their daily life. So this is one of those things that you can prepare by knowing what your providers and your practitioners have documented. Then income school records if the person is under 22. Now, for those of you who are supporting a 17 year old in this process, which would be an application for probably SSI.
They don’t have enough work history yet. If they have had that summer job or something like that, they’re going to look at your household income. They want to know how many people are in the house, what are your assets, that sort of thing. And that’s for something called deeming. And it’s a word that you’ll see in quite a few, not as often as SGA, but you’ll see it because it’s assumed that as a parent, you are providing basic things for your child and it’s not their responsibility yet. So your income, the home that you provide, the food that you provide is all deemed as part of their care and their basic needs. But it is a decision, and that’s why they ask for the entire household information when you’re applying for a young person. And then as that documentation, bank statements, retirement accounts, that sort of thing, There is an adult checklist and there’s a child checklist provided by Social Security. It doesn’t necessarily. It’s a great start. It doesn’t mean it’s going to answer all of your questions as you’re preparing for this. But it is a good start. All right. I see a couple more questions. Eric asks when you qualify for benefits, are they typically for time moving forward and not retroactive for months or years in the past? I actually do cover that in a slide.
Marcy: I don’t know that we’re going to get to it tonight because your questions have been amazing and I love it. So maybe Shannon and I will have to do a follow up. But they can go retroactive because if someone’s been denied and it’s like two years later because they’ve gone through an appeal process and they’ve gone through all these processes and Social Security, when they get to the end of those processes, says, oh, you know what? We agree that this person has a disability and we should have approved this back in 2023. Then there’s retroactive pay all the way back to that time. It’s great, but it has pitfalls of its own. Okay. Sharon asked, are you automatically enrolled in Medicare once approved? No. Medicare is for people who receive a title two. So SSDI or CDB benefit and they’ve received that benefit for 24 months. They become eligible for Medicare on the 25th month. And if you’re already enrolled in a state plan how does that work together? Great questions. I do have them covered later. Um, but they work together. In fact, your employer healthcare, will work with Ma, a state plan, and Medicare all at the same time. They can have three insurances. It’s who pays first medical assistance, regardless of what type of medical assistance will always pay less than the payer of last resort. Whether Medicare pays first or an employer sponsored program pays first will depend on specifics of that employer sponsored Coverage.
And that’s an HR question. Like I even if I had the name of your insurance company, I couldn’t answer that question that we have to look at your person who holds your benefits. Do special needs trust count towards the $2,000 asset limit for SSI? Barry is asking. Short answer is no, they do not. That’s special needs trusts do not. Jane was wondering about that as well. Okay, I feel good about answering your questions, but did I do them justice? Did I? Did I speed through them too fast? Barry’s got thumbs up. Awesome. Emily’s got thumbs up. I appreciate the questions. I know we won’t get through all the slides, but that’s okay, because I’d rather answer your questions than get through my slides. So there’s a lot on here, but I’m just going to tell you that the application is first that can be done online. It can be done on paper. Then that application is reviewed by the Disability Determination Services. If they find that the medical conditions are met. Then they move on to determining the date of onset. So even though a person may have had the disability diagnoses for ten years, there might not be enough documentation to go back ten years. There may only be enough documentation in the last six months that meet their criteria. Again, one of the areas that people get denied is because documentation does not reflect the impact on their life back.
Marcy: Payment is issued in the month they’re due to start receiving benefits. So when there’s a disability onset date determined they still have to wait five months if they’re receiving an SSDI benefit, SSI doesn’t have to wait that five month, nor do CDB applicants. And then there is such a thing as a medical continuing disability review. Remember I said that SSI they review annually for financial eligibility SSDI title two benefits. Reviews for continuing disability. Are you a person who still meets disability criteria and that is set? The cycle is set depending on the likelihood of improvement. So for all people who have statutory blindness, Social Security says that’s unlikely to improve. And so they do a 5 to 7 year or sometimes seven plus review period. So the denials for both SSI and SSDI, there wasn’t enough evidence to show that the medical condition keeps a person from working or for young people under 18, impacts their daily life. Other things for SSDI, they haven’t reached insured status. Their wages, if they’re working, is above that SGA amount for SSI. Too many assets, countable income is too high. And for families these things are frequent. Your combined household income is too high, your assets are too high. And that’s because they’re looking at your income for your young person as deemed as well? Yeah.
Speaker5: Is that asset limit just on SSI or is it on SSDI?
Marcy: It is SSDI. Does not have an asset test. Yep, it’s just SSI. And that’s because it’s a financial needs based benefit. They used to call it as part of the welfare system. Very outdated language. But if that helps understand. Yeah. When a person applies they actually review first for SSDI. And you may get a letter saying my son has been denied for SSDI. That does not mean that they’re done. It means that they’re going to review for SSI. But because SSDI is not a financial needs based program, they’re going to look at that first. Although the likelihood of a child being eligible for SSDI is pretty limited. Various SSDI only for when someone can’t work at all, or if they can only work for limited hours. It is when they cannot achieve an income of substantial gainful activity so that 1670 or for someone who is blind, that $2,700 if they can work but they can’t earn above that or aren’t earning above that amount, then they are likely eligible for SSDI if they meet all the other requirements. Did that help? All right. Awesome. Let’s see. Do special needs trust some countable income? Apply for over 18 kids? Yeah. Countable family income. When someone turns 18 there is an age 18 redetermination. Let’s see if I can find it. Oh look I have a slide turning 18. SSI has different rules for kids and adults. When someone is under 18, we’ve said that they look at functional limitations. Does a disability cause severe limitations in daily life? That’s what they must see. For someone who’s under 18.
Marcy: For an adult 18 and over, the disability must limit the ability to work whether or not they’ve been receiving SSI, SSI or CDB. This is what they’re looking at for SSI. Now if a person has not received SSI as a child and not receiving any benefit, then the standard social security application and determination is used. It’s business as usual. But if they’ve been receiving SSI as a child, that’s when they use an age 18 redetermination and it has to be done in that year between 18 and 19. It gets missed because Social Security doesn’t always initiate it. So this is where having knowledge is power. This is where having the awareness for yourself, you can initiate it. You can request that it’s done. Because what happens is people get in big trouble with overpayments because they weren’t anticipating and they weren’t prepared for that. And so they just continue to receive payments sometimes three, two, three, maybe even four years, because Social Security is behind and they’ve missed things. It’s a systemic issue. It’s a huge barrier. So you can request that. Age 18 Redetermination it’s more simple than a standard adult disability determination. If they have an IEP, they’re working with VOC rehab or SSP. If they have a pass plan, a plan to achieve Self-support, they can continue their SSI benefit, can be extended and can like it kind of helps the process, right? Social security is already once said that this person has a disability, and so it takes some of the workload out from Social Security. Rep payee status. So if you have rep payee status for your child, that may change the parent to child deeming ends.
So that’s where the countable family income applying for over 18. The answer is no. It changes. There are still some rules that apply with income and asset. That young person is living with you that can impact SSI. It’s called a value of one third reduction. Another complex issue. But know that if they’re not paying their fair share, it can impact their SSI amount. So that’s something if you’re like what we got through this age 18 Redetermination they said they’re still eligible for SSI, but now we’re only getting $600 or we’re only getting $500. It’s reduced by at least a third. That’s where we want to start looking at the living situation. So just a back of your mind. Yeah. So if someone else pays for that, look at that. I have that as that last bullet. Okay. Daughter doesn’t receive any SSI or SSDI and she’s turning 18 in 2026. Suggestions on number of months in advance to apply. You cannot apply until they are 18. So if you were to apply with her now, it would be as a child under the age of 18. And the reason you can’t apply until they’re 18 as an adult is because that redetermination is done between 18 and 19. It’s done during that year. Does that make sense? Yeah. You’re welcome. Okay. I’m so happy that we’re approaching the end of time. And I’m still making some sense. I should give myself a gold star in the morning or something.
Shane: Marcy, could we go back to the denial slide? I know that’s a very hard question. Or appeal.
Marcy: Absolutely.
Shane: I think yeah, the denial then appeal. They’re both kind of very hot questions.
Marcy: Yeah. Primarily denials happen because there wasn’t enough evidence to show that the medical condition, the disability impacted their work or their daily life. SSDI, they haven’t reached insured status. They’re earning too much money, SSI above the asset limit or the income. They’re countable. Income is too high. A huge issue for families. If the person is working, they’re above that SGA amount. And remembering that just because someone is denied for SSDI does not mean that they’re denied for SSI. You would get separate letters from Social Security. Likely you’re going to get SSDI one first because that’s what they look at first. So what to do if you get denied? File quickly. File your appeal quickly. You only have 60 days. Unfortunately, the United States Postal Service also creates barriers for us on occasion. So just be watching for that. I can’t tell you how long it takes for them to process. It depends on. They may have sent a request to one of your providers and your provider hasn’t gotten back, and they’re waiting. So that’s just too big of a variable for us to even guess at, unfortunately. But once you get that letter, you can request an appeal. You can you can appeal that decision in writing, and it’s an opportunity for you to provide additional information or new information. And remember what they’re looking for is your the providers or the practitioners demonstrating through their documentation the impact on a person’s life.
I would even recommend talking with the providers that are supporting you, or supporting anyone who’s applying to have the discussion with them. We’re considering applying for Social Security, and documentation needs to demonstrate this, and ask them to be very specific in their documentation. If that appeal that a written request to reconsider is denied, then you can request a hearing before an administrative law judge. And this is more often than not, they’re still virtual. I’ve heard very few of them be in person. You can have witnesses in attendance. You can still bring additional or new information. That Law Judge is looking at what you’ve already provided may consider new or additional information. Hear from witnesses. And this is where people can start to bring an attorney into the process. If we get through that and that’s denied, you can request a review by the Appeals Council. And this is a panel where they review everything that’s already been presented. It does not give you, as I understand it, it does not give you the opportunity to provide new or additional information unless they request it. They may request that the person replying sees one of their providers so they can get additional or different documentation, new documentation. The council can agree with the judge, they can make their own decision, or they can send it to a different judge to review. This is also one where you can have an attorney present.
If this fails and results in a denial, that’s when it goes to a federal court. And this is definitely where people typically have an attorney present. So that is a very, very high level of what happens. But you can see why it might take years. Please be very cautious in reapplying, because if you reapply, especially for someone who has blindness, as we said earlier, it’s something that Social Security doesn’t determine that it’s likely to improve. You’re really setting yourself back. It can be incredibly painful and frustrating to go through the process, understandably, but resist a new application because that starts everything over. The responsibility to prove disability falls on you, whereas as you get further and further, it just becomes more of a decision and less about what you can do, quite honestly. But it makes life incredibly difficult if you just reapply. It just draws out the process even further. Jane asks for children on SSI. Is there income limits for the parents? Yes, because that’s where that deeming comes in. If your household income too high, they’re going to say no. You can provide the equivalent of $967 for your child. Does that make sense, Jane? Awesome. Thank you. Emily. What if you missed the 60 day appeal? They asked for more information, and I never heard anything back. This was in May. Did you get a denial letter, Emily?
Speaker6: We got a denial. And then they asked for more information. And when I sent that, apparently, like, I left her Social Security number off of it. So they sent paperwork asking for the Social Security thing, and I sent it certified. But then, like, I just have never heard anything back.
Marcy: It’s so difficult because Social Security has just been so way behind with all of the changes happening and all the adjustments that have been made this year. So it’s really hard saying I would call and follow up. Okay. Again, because it’s in the status that it is. There’s not a claims representative Assigned yet, so it makes it really difficult. But you maybe the disability decision just totally lost the word determination group. They may be able to get you guided. And I will send Shane that phone number because ironically it is one digit off from my office phone number. And so I get a lot of calls intended for the disability determination group. Yeah, okay.
Shane: I hate that we kind of have to normalize the appeal process, but we do, because getting that denial letter is extremely common and you’ll in mercy probably has way more examples of this, but it’s not uncommon for individuals who have to go through that appeal process all the way up to that fourth bullet point that Marcy has on this slide. And that’s where it’s also important to know that, you know, say you originally applied for that benefit in 2020 and you did another appeal in that final determination. Let’s say I don’t know how long it could take, but let’s say it’s two years later, the applicant is deemed eligible for that benefit. That is when those payments can be retroactive to that original application back in 2020. So it is very unfortunate that the appeals process is so common, but know that it is common. And if you do get success in that appeal process, that retroactive payment will go back to that original application.
Marcy: I have experienced situations where it’s been three years and they get the approval, their benefit starts and then they get their Medicare card in the mail. Because remember, if you’re eligible for an SSDI benefit or a cdhb benefit, Medicare starts on the 25th month. So two years after you’re deemed eligible. So they start getting their benefit and all of a sudden they’re also eligible for Medicare. It kind of messes with people’s brains. And it feels really, really messy after a whole lot of frustration. But again, that’s why we have things like Disability Hub. That’s why my position exists, is to help guide people through that. I will continue to work closely with Shane to do what I can to bring you guys information, and would love to hear what would be helpful just to parents in general, and how do we build the capacity for the young people in our lives to know what they can? How do we make that accessible to them? Okay, I have some slides on SSDI and work well, both benefits and work. Yeah. Shane just dropped the hub information in there. If you talk to him, tell him I said hi. What would be helpful? I’d like to hear from you because we’ve got. Let me flip through my slides real quick. Not to make anybody motion sick, but SSI and work SSDI somebody. And one of the questions had been about trial work period. And there had also been questions about health care coverage. So we could talk a little bit about Ma. We could talk a little bit more about Medicare.
Speaker7: Like MA, because I think isn’t there different financial requirements or restrictions for parents for healthcare coverage and children?
Marcy: Yes there is. All right. I think I saw Emily nodding her head, too, about healthcare coverage. And given it appears that you’re someone who works in healthcare coverage, it’s probably a source of frustration on a different level. Should parents keep the child on their own health care coverage as long as possible before going on to Ma? You can have both. Do not let them tell you that you can’t have both. You could actually have all three. You could have Medicare, your own coverage, and MA again, it just Ma will always be the payer of last resort because it’s a financial needs and we don’t want to tap into the system any more than we have to. So if there’s other ways to pay for things. That said, if you utilize Waivered services, PCA services, those are only accessible through medical assistance. And that’s where, as Eric mentioned, having the different income and asset guidelines, the different eligibility criteria for kids and and adults can come into play. Medical assistance. There’s income based Ma, which is usually what we’re most familiar with. It’s somebody applies. They say, no, you make too much money. It’s the low income. It’s associated with assistance. It’s available for adults, pregnant women, children. It’s available for everybody. But you have to meet an income criteria. There is no asset limit. So that is one difference. If you are someone with a disability under is eligible under disability based Ma, it’s low income. In fact it’s lower income than income based Ma.
And you have to have a disability determination. You have to be receiving Social Security or to throw another acronym out there, a Smart determination state medical review team. When someone this is where logic doesn’t apply. Again, when someone receives Medicare, they’re automatically bumped into this disability based Ma category and it can create issues. So just if somebody if somebody becomes eligible for Medicare through a CDB benefit or their own SSDI benefit, as your young person reaches further into adulthood. Just keep that one in the back of your mind too. You can have dual eligibility. The county is supposed to say this person is eligible in multiple categories, but we need to put them in the category that creates the least amount of barriers, or is the least intrusive to their living situation. It does not always happen. So another area to be aware of that there may be different categories of Ma that are being considered for your child. It’s based on household size. So if you have a family of six, there’s a different income limit than if you if it’s a family of two. When a child is between the ages of two and 18, it’s also a higher income limit. It still uses the same household size, but the income limit is higher than it is for adults. And that’s to make sure that our kids have health care when after age 18, it lowers a little bit.
And so it could impact your child, but it also may impact your family. And then there’s a person has to be a resident of Minnesota. They have to have a disability determination through search or social security. And they have to be working, earning at least $65. Well, $65.01 is usually what we’re looking for. And there is a small premium. There’s also no asset limit with disability based. MA has an asset limit equal to that of SSI $2,000. So if you have someone who is working and their goal is to save money, I don’t know because I want to go to Nashville every year as a vacation and that takes more than $2,000. And what else am I supposed to do with it? And I’m not shoving it in my mattress. Then MA may become an option for them. It still helps you keep Waivered services, and it can begin at age 16, certainly for young people 18 and older, but it can begin at age 16. Okay. James asks, should parents keep in if the child is over 18? Is the main income requirement based on the child’s income? Or does it include the parent’s income to its household? It is household. Now, that said, there are other programs like a Tefra program which I did not go into. There’s the Map program, so there may be options if you’re denied Ma and you need services like PCA for your child or you want to use Waivered services, it’s a good time to explore what are the options because there are few, but there are some options to try and get into that Ma so that you can get those services met.
This is just a more of a side by side comparison. There’s that asset limit 16 to 64 and have a disability premium. So this is something that I just grabbed right off from the hub website. And Shane’s dropped that link in there a couple of times. And if you go from Disability Hub there’s different topics, but there’s also at the very top there’s a link to DB 101, and if you click on that link, you can see more specifics about healthcare programs and cash benefits like SSDI versus SSI in relatively plain language. It’s not it’s not like if you tried to go read The Palms, which is the manual for Social Security or the combined manual for Medical Assistance, uh, special needs trust. I am not sure how special needs trusts work across state lines. They’re not counted as assets here in Minnesota, unlike an able account, which it doesn’t matter what state. I don’t know if a special needs trust has to be specific to Minnesota and therefore the attorney specific to Minnesota. That is a good question. I will do some digging and try and include that in email that Shane sent out, but a resource to find that would be Ark Minnesota. Awesome. Okay so Medicare remember this is that CDB for two years at title two part A pays for hospitalization.
There’s generally not a premium. Part B pays for doctor’s visits outpatient care therapy that sort of thing. Most people it’s $185 a year right now or a month. Excuse me. Lovely. If it were only $185 a year, $185 a month right? Now, add that if you’re receiving a small amount of SSDI and you’re trying to live on your own, especially as a young person newly starting out and you’re and Medicare is how you get your healthcare coverage, that’s a lot of money. That’s a lot of money when you’re also having to then pay for part D, a part D plan, and and you’re paying your deductibles and your co-pay. I mean, we’re all familiar with the high healthcare coverage costs or services. And unfortunately Medicare can really impact people that way, but it is coverage and there is financial assistance. So A is hospital, B is your more your daily sort of daily life healthcare coverage. Part D is D for drugs prescription coverage. There is financial assistance for that part B premium to cover part or all of it. There’s also part D financial assistance each program. They’re not the same program. There’s two separate programs. They each have their own eligibility criteria. However, if you are a person who is eligible for medical assistance, you are deemed eligible, but you still have to request the county to give it to you for the part B, and you might have to ask Medicare slash Social Security to give it to you for part D.
Sometimes they miss the automatic application. Another great area to actually you could call the disability hub or senior linkage line. And I know senior linkage line. It doesn’t make any sense that we would call that for our 19 year old or 20 year old, or even if you’re 30, it doesn’t make any sense. But they are the experts on Medicare, and they are the contracted agency in Minnesota to help with enrollment and that sort of thing, with supplemental plans and part D plans, all things Medicare. Sharon’s asking, can you get information on your adult son or does your son have to be on the line? I’m speaking for Disability Hub and Social Security. Unless you have a release or have documentation or the signed paperwork that you are the representative payee or guardianship and provide that documentation of guardianship, you would have to have your adult child on the phone with you. Now, that does not mean they need to stay on the phone with you. It just means that they need to give permission for you to continue that conversation. And that’s for the hub. Social security and senior linkage line. Social security might give a little pushback with that, but sometimes I think it depends on who you get answering the phones, unfortunately. But it really it’s that way anywhere I think, that you call, but they just have to give permission for you to have that conversation and receive that information.
And that verbal permission is only good for that particular phone call. Does that make sense? All right. Awesome. Thank you. Okay, so if someone becomes eligible for Medicare in order to continue receiving their Ma coverage, they must accept that Medicare because it becomes a payer of last resort. So they’re saying you’re eligible for another coverage and you need to accept that coverage. And then we’ll kick in. So that kind of is a lovely segue into employer sponsored healthcare coverage. Ma remains moves to the payer of last resort. They pay last. If a person has Ma and there is employer sponsored coverage available to them, whether it’s through their own employer or through a parent’s or spouse’s Ma may say. The county may say, you have to take that because Ma is going to move to the payer of last resort however we might pay. They’ll determine if they’re going to pay a portion of the premium or all of the premium, as well as what they would pay toward co-payments and deductibles. The cost effectiveness comes in in that it may be cheaper for us to cover a portion than cover the whole thing, depending on the type of coverage it is. Now they may say, nope, that is not affordable coverage. We’ll just continue to cover the Ma recipient as it is. Sharon, is that online like getting information?
Speaker5: No. When you accept your Medicare, you said you have to accept Medicare to get the MA. Do you accept that on the Social Security website when you accept that? Because like when you accept Medicare, right? You can accept the regular Medicare or you can do the advantage plan, right? Do you do that online?
Marcy: So Social Security only provides original Medicare.
Speaker5: Oh.
Marcy: So that that part A and that part B, what happens is they send you a letter and they say, hey, in three months you’re going to be eligible. It’s going to start for you. And they send you your card. And how you accept it is you just keep your card.
Speaker5: Oh, you don’t even have to do anything.
Marcy: You don’t even have to do anything because it’s an automatic process. the only thing that’s not automatic is if you deny or you may be able to drop part B and D, there’s really no sense in dropping part A because you don’t pay for it. So look a gift horse in the mouth sort of thing. You’ve earned it. But if you have creditable coverage, so it’s at least as good as the Medicare coverage, you can send the card back or call and say, I don’t want part B, but they will ask you, likely ask you to provide evidence of creditable coverage. And that becomes incredibly important. If that beneficiary has MA and they want to keep that MA.
Speaker5: Yeah. Because if you’re if because I have a son who’s on some ma assistant medical right now.
Marcy: Yeah.
Speaker5: But he just got eligible to be on Medicare just now. Actually, they backdated it to eight one 2020. So you’re telling me that you can keep the medical assistance that he’s already on, but now he’s eligible for Medicare as well? So Medicare is going to be his first payment. And then MA will kick in after. Correct?
Marcy: Yes. And MA will continue to be the one that pays for PCA services for provider is the waiver is the indicator of waiver. There’s certain things that MA will pay for that Medicare doesn’t, which is an entirely different presentation. That would probably take two hours as well. But yes, now the difference comes in Where the hiccup might be is that he was likely on income based MA. And now with Medicare his next review, they will try and slide him into disability based Ma, which is has that asset limit test and has the lower income just as a preventative measure. And to know what could be coming. That’s a great question to review with the hub.
Speaker5: Oh okay.
Marcy: Yeah.
Speaker5: Got it.
Marcy: And as far as like advantage plans, which is a type of supplemental plan, those aren’t required. You have to sign up for them. And we’re coming up on the time of year because it’s open enrollment will you will get inundated with commercials and junk mail and all sorts of information about pay, zero payment or premiums and things that sound too good to be true. Use extreme caution if you have aging parents or yourself receive Medicare for a reason. Use extreme caution. Use the services at Senior Linkage line to review your coverage. And Emily shaking her head. It’s huge. You can really mess yourself up. I don’t know how many times had conversation with my dad and it’s difficult to understand. You also need to understand how you use your healthcare. Medicare doesn’t cover dental or vision. And so if that’s something that is vital to you or vital to your child’s or your spouse, that is something that you want to review. Consider those supplemental plans. Explore your eligibility for Ma. Because Ma does cover those. However, finding a dentist that accepts Ma is also a huge barrier, and so it might make sense to pay for a supplemental plan that has dental insurance simply so you can have that. So if you have a disability that impacts your bone density or something that really can impact your dental health, those are things to consider. So it just continue to add to the complexity and continue to stir the pot over. Logic does not apply, but use caution when we become inundated over the next few months with all the Medicare information out there. Okay.
Speaker7: I would say one of the big benefits with having your MA as a secondary coverage is, let’s say, as you’re looking at your healthcare needs for your whole family, and you have somebody who is on MA for a couple children. On Ma, you may choose a high deductible commercial plan for the family and you’ll be like, well, this is going to cost me $6,000 to reach my deductible. Well, the children, as they create claims that deductible flows over to Medicaid and Medicaid will cover those. And soon you’ll have reached your deductible and then everybody in the family can benefit from it.
Marcy: Yeah.
Speaker7: Great example because in the commercial, coverage will kick in.
Marcy: Yes. And another really good example of why it’s important to understand how you use your coverage. Find a broker use senior linkage line of Medicare is in there. Call the hub. Use the hub website to try and sort through that information. It’s a maze. It truly is. But that’s a great example. Thank you Eric. You all are still here. And so I’m going to take that as an invitation to keep sharing information with you. But do not feel that you need to stick around. I know you were parents. We have busy lives. Yeah okay. Income and asset disregards. Now the thing about income and asset disregards for Ma is that they’re very similar, if not exactly the same for SSI. When a person receives for Ma if they receive Ma and they receive a CDB benefit, that entire amount can be disregarded. I’ll make the story brief. I supported someone quite a few years ago now who was losing all their financial assistance for Medicare, which meant that they were losing. It was just this ripple effect. Housing was becoming unstable because of this. They were going to lose their ma. They were going to lose their nursing, their med nurse, like just this catastrophic ripple effect because they had a spend down ma with a spend down is another thing that it’s not fun to talk about, but it’s a thing. And they had a spend down.
It’s very similar to a premium of almost $900 a month. And this was years ago. And the county said that they weren’t paying it, except they had a provider that they were paying it directly to, which was a contract with the county, that this is what would happen. And they had the canceled checks to show that they were doing this. We got that all taken care of. It should have never happened. It happened. It was a glitch in the system, which we know happens in technology, but then in further investigation, this person, their Social Security benefit was a benefit for nine years. That entire amount that should have been disregarded was not that person, because we were able to get that fixed as well as their spend down, the state had to pay that person back almost $23,000. So that’s the power of these disregards and some of the work incentives that exist. So explore ask questions about the possibility of these things, whether it’s with the county or with Social Security. It’s worth it, even if it means you’re banging your head against the wall a little bit, trying to understand what questions to ask. There’s resources out there. Use them. Let’s make sure that you and your family take advantage of what’s intended to be used. Okay? A path plan, which means that a person has income that they can put away for an employment goal, and all that money that they put away is disregarded.
Marcy: It’s not counted as an asset. A student earned income exclusion. So as a student, their income from work can be excluded and not counted as the part of the household income or not counted if they’re living on their own. And this is for up to age 22. There are certain requirements. They have to be attending school regularly, and there’s a definition with regularly, but this applies past plan and student earned income. Exclusion also applies to SSI and Ma Airways or impairment related work expenses. Blind work expenses. Those are things that also apply to SSI and Ma, and these are expenses related to work specifically for that. They’re related to work and related to their disability. But it has to be related to their work, and it has to be related to their disability, and they have to pay for it out of their own pocket. They can’t be reimbursed for it. They can’t be provided by a program like SSP or VR. It has to be something that they paid for, and they can exclude that amount to reduce the countable, the income that’s considered for Ma and for SSI and SSDI with that one blind work expenses is for is an income reduction for Ma and for SSI. And it does not have to do with blindness, but has to do with work during work hours.
So even childcare meals while working can be as long as there’s documentation, receipts, that sort of thing can be counted as blind work expenses, as child support payments, exclusion. They count as unearned income. It’s unearned income to the child because it’s intended for the child. A third of that amount is excluded, and that’s for Ma. There’s been some questions about special needs trusts. Special needs trust is when the individual contributes to it. Supplemental needs trust is when families contribute to it. So a grandparent might open a trust for them. It’s not in their name, but it’s designated for them. It’s excluded as an asset. However, if there’s a disbursement, that disbursement is counted as income in the month that’s received. So if I take money out of my trust on September 30th, it’s counted as income for September for Ma, but it’s not counted as an asset for either Ma or Social Security SSI, an able account also excluded as an asset. The distributions are excluded as an asset. Earnings from the interest or dividends or appreciations and value are also excluded. Able accounts. If you’ve not looked into them, please do. I hope you’re pleasantly surprised at what you’re finding in there. Then there is eligibility under a program called Fancily titled Very Fancy 1619 A or 1619 B. And it has to do with I received SSI, but I earned enough money that my benefit went to zero.
Marcy: But I’m still eligible for MA and they don’t have an income test and they don’t have an asset test. It’s a huge, I think, especially for young people trying to work off from SSI or trying to work and get their feet underneath them and really trying to develop a career. It’s a powerful incentive. Questions about income and asset disregards. All right. So SSI and work. Remember SSI is a needs based benefit. And so how much a person makes and their assets are really important. The benefit total whether that’s the full amount of 967 or if it’s reduced because of a person’s living situation, whatever their full amount is reduced on all available income. So earned income is wages. Unearned income may be like SSDI or long term disability payments. Short term disability payments. Those are unearned income that could reduce a person’s SSI benefit. Unlikely to happen for a kiddo, right? But if they have that summer job, it will reduce their benefit. How is it reduced? Reduced by half of the earnings. So the basic equation is they take off $20 right off the top. They just say yeah we’re just going to subtract $20. And then they subtract an additional $65. So really why they do it this way. Why they do it in two steps I don’t know. But it’s really that they’re saying $85 of income.
We’re not counting that. And so $85 is safe. Then they take what’s left and they divide it by half. So this is where for every $2, the benefit is reduced by $1. So if I’m earning $100 or I’m earning $200 a month from my summer job, they’re only counting $100 of it. Approximately. There are tools on the hub website. I’m going to try and pull it up quick. So I’m actually on DB 101 and I’m in the SSI article and this is called a try it. They’re always in this sunflower yellow and it’s a calculator. What’s your SSI 967? Msa is a benefit provided by the state that someone may be eligible for. I’m blind if I’m blind according to Social Security. If you don’t know what they’re talking about, there’s this little question mark here that can help you answer those questions. Are you under 22? We’ll say yes because we’re talking about our kiddos tonight. Are you in school half time. Did I work in July? Yeah. How much did I earn? Well, let’s say I earn $200. We’re not going to deal with these right now. Gross income. Well, I’m going to continue to earn $200. And it gives you a little graph so you can play around with it. So if your kiddo is like, you know what, I want to be an astronaut and I want to earn, you know, $100,000 a year.
Okay, well, let’s play with it. It’s a great way to introduce work into the conversation without really messing with your benefit, but still building some understanding for both you and your child. So those are called tryouts. They’re embedded in the articles, and it’s this little hammer and wrench crosshatch. If you work so much that your SSI benefit is reduced to zero because eventually it will, right? If you earn enough, the program 1619 B allows a person to maintain eligibility status. So it still says you’re an SSI recipient, but the amount you’re receiving every month is $0. So if something happens, it’s a degenerative disability or you acquire a different disability in addition to something that you’re already dealing with and you can no longer work or your hours are reduced significantly, that gets reported and your SSI can resume without reapplying or without a whole lot of hassle. Will it take a little bit of time? Yeah, it’s you know, you can’t snap your fingers with Social Security, but it’s there. It’s great. Those work incentives kind of like we talked about with the healthcare SSI, they can earn up to $2,350 a month and not have it counted as income, as long as they’re regularly attending school and regularly attending school. If they’re attending a college or university, it’s eight hours a week. If they’re middle school to high school, it’s at least 12 hours a week if they’re in a training course or a preparatory course.
There’s requirements as well. Airways or impairment related work expenses. Social security reviews those on a case by case basis but paid for out of pocket. There’s documentation of the purchase and that the purchase is needed for work because of the disability. So it’s not if I work in construction, I need a high visibility vest. Right. That’s not related to my disability. It’s required for work, but it’s not related to my disability. So it can’t be an airway. But if I need somebody to transcribe something for me into Braille that’s related to my disability and related to work, and so it actually could meet both categories of or we and be we, but it can only be used as one. So something like that. It actually might make more sense to count it as an airway and transportation. Or my lunch at work can be counted as a B. We? Jane asks, so student works or SSI won’t be reduced as long as they are a full time student and they don’t go over the 2350. Yeah, that’s the long and short of it. There’s a there’s a little bit to it. I will try and include the SSI information in email too, so that you can dive into it deeper. But yes, that’s the long and short of it.
Shane: Jane and Marcy, with all of this, you know, I think one thing that we come across is that fear that people may have about working and losing their benefits.
Marcy: Absolutely.
Shane: And we do everything we can to deliver this information, to inform everyone how you can work and receive benefits, or retain access to benefits through those work incentives. Yeah. You know, with SSI as an example, individuals was working. You have to make, you know, so much to get that benefit down to $0. But that monthly earning, if you get to that point, you’re going to be making a lot more than what you would be receiving SSI, even if you’re only making, let’s say, $500 a month in your benefit is reduced, a couple hundred dollars at the end of the day, at the end of that month, you’re still earning more money and retaining that benefit. So that’s why it’s important to have these conversations with a benefit specialist, really learn about and dive into your individual scenario so that you’re informed and have all this knowledge to know that, yes, I can work and here’s how it may affect benefits. And here’s the resources and tools I have available to help me go through the process of understanding all of this, because it is not easy. There’s no particular science to understanding all of it and being comfortable with all of the knowledge, because it is so convoluted. And that’s where I can’t stress enough that we are a resource. There are other resources out there available to help dispel some of those myths about working and receiving benefits, and some of the incentives that are out there and available.
Marcy: Absolutely. Well said Shane. I did drop the information in there. Eric was asking if a blind college student is receiving college tuition, room and board from SSB. Does this impact SSI benefits?
Speaker7: It’s not considered earned income or any kindof asset.
Marcy: It should not.
Shane: No it should not.
Marcy: It should not. It would not be considered earned income for sure. If anything it would be considered unearned income. But I don’t believe it is. And I can dive into the manual and find the specifics for you, Eric, if you’d like. But just top of head knowledge and Shane is agreeing with me that no, it does not count. Yeah. It should not impact their SSI benefit in at all. Yeah. Great question. Okay. I’m just going to quickly look at SSDI and work so we can wrap up. My voice is tired. I am so impressed that you guys are hanging here with me. Thank you. Thank you for the engagement and the questions. I cannot tell you how much I appreciate it. And Shane and Jeff, the fact that you two are also hanging on. Kudos. Thank you. So SSDI and work SSDI is an all or nothing SSI is like. If you think of it as like a dimmer switch, it can be really bright, it can be all the way, it can be a little bit, it can be in between and it’s going to change as SDI is the light switch. It’s either on or it’s off. So all or nothing benefit. And there are three phases trial work period which somebody asked a question about. You keep the benefits no matter how much you earn. Even if I earn $2 million in a month, I still get my SSDI benefit. If I earn $10, I get my SSDI benefit. Then there’s an extended period of eligibility. Benefits continue during these months where the income is below that SGA amount.
And this is where work incentives become really important, because if I can reduce that countable income, I may be able to be below SGA, which means that I get my full benefit and I get the maximum amount of my wages. And so I’m just like, I’m better off post. Eep. This is where the benefit stops when I’m earning above SGA. But if it’s within a certain period of time after, I can still request if I have to stop work or my hours are greatly reduced, I can request expedited reinstatement and Social Security assumes and they give you six months of payments while they review your continued eligibility to receive the payment. I’m not going to go into anything except the trial work period, because as young people, if I were doing this for us as adults, I would. But for young people, the likelihood that they’re past trial work period is probably like nothing, quite honestly. So trial work period. It’s nine months within a 60 month or five year period. It’s rolling. It doesn’t matter if the months are in a row or if they’re spread out. If I earn over 1160 is the amount for this year and it will go up in 2026 if I earn $1,200, tick. I’ve used one of my nine months, but I still keep my SSDI. I still get my benefit. So I earn $2,000 in September December because I’m one of Santa’s elves. I’m going to earn $1 million. I’m going to still keep my SSDI benefits, but I’m using another trial work period.
November. I was off for Thanksgiving and I didn’t earn anything. So it’s not a trial work period. But October through December I’ve used two months. It doesn’t matter that they’re not consecutive. Okay. Does that make sense so far? If I were Santa’s elf all year long and I earned $1 million every month, nine months, boom. My trial work period is over. But if I’m a seasonal employee and I’m only earning that million dollars 3 or 4 months at a time, I’m only using and I don’t work the rest of the year because I don’t need to. I just made a million bucks. Only those four months are counted. I could earn $500. I could earn $1,000, and it wouldn’t be counted as a trial work period. So it doesn’t have to be consecutive, but it has to be over 1160 and there’s no higher limit. Like it doesn’t matter. And I still receive my benefit when all nine months have been used within a five year period. That’s when trial work period ends and I move into EAP. If it’s been five years or those 60 months and I haven’t used all nine months, the months outside of that rolling period don’t count. So if I took a year off from being Santa’s elf and it’s now four years later, six years later, that stuff that I did at the very beginning doesn’t count anymore. It falls off. So it’s like this. I don’t know, isn’t there a math?
Speaker7: It’s like your driver’s license.
Marcy: Yeah.
Speaker7: Those points they keep rolling off after they get too old.
Marcy: Great example. Yeah. So things fall off. But it is a five year period. And there is a tool on DB 101 available through the hub through DB 101 that shows you which months are currently being counted. Now someone could have used their trial work period ten years ago, but they’ve never earned over SGA, so they’re still just kind of like forever in that eep, which is fine, but it’s probably one of those things that doesn’t even register that they’ve used their trial work period anymore. But for young people, this is really important to keep, especially as they get beyond the summer jobs. Right? Or maybe they do do something where they hit a pretty good amount of, I don’t know what would earn really good summer.
Speaker7: They worked for the State Fair.
Marcy: There you go. And they earned really good money for a month. It is important to keep track of that and keep that organized. And there are some suggestions for keeping track of that on DB 101. Most people, in my experience, have used some sort of binder that just has that in there. There is a report that you can get from Social Security, but like getting anything from Social Security, it’s a little bit like pulling teeth and may not be worth it if you can stay organized during trial work period. Work incentives like are we be we they can’t be used. You can’t reduce that countable income so that, you know, maybe you earn $2,000 and you’re trying to get it to be less than the 1160. You can’t, you can’t. We can’t use those. Okay, questions about trial work period SSI and work, SSDI and work. Dang it. It’s after nine final questions. Anything you need clarity on anything that you would like Shane to, whether it’s me or somebody to come back with that would help wrap all this up. Final thoughts?
Speaker7: So it sounds like we start with the benefits hub. Or can we fill out an application on SSDI or SSI?
Marcy: If you’re just starting out to apply for benefits, I would say go to Social Security and look at those checklists, look at all the requirements, prepare yourself and then start that application. Talk to your providers practitioners that are supporting the disability or disabilities. They usually a disability determination is is generally based on one disability. That doesn’t mean there aren’t concurrent but and mental health diagnoses are the most difficult because they’re generally the ones that are considered the most likely for improvement. Where something like paralysis, blindness, you know, those are pretty obvious that there’s less of a likelihood of improvement. Start with those checklists. Those links will be included in the PowerPoint. Point, Sharon. What if you make hardly anything but you have saved a lot of money in your savings? Yeah, it’s a tough one because it’s going to depend. It’s going to depend on the work history. Because if you’re eligible for SSDI, how much you have in savings doesn’t matter. It’s when you’re eligible for SSI or that’s actually that amount in savings will make you ineligible. And that amount is deemed if you’re talking about your child.
Speaker5: But not for SSDI though, right?
Marcy: Correct. Not for SSDI.
Speaker5: That for MA for for assistance though. Medical assistance.
Marcy: Um, it also is going to count for MA as a person with a disability. There’s the asset limit of $2,000. And so if you want or need MA as long as your son. Correct. As long as he’s working.
Speaker5: Um, no, he’s not working. He can’t work.
Marcy: Okay. That’s really the only alternative is to move that into something like an able account or a trust, or to work so that Mapd is available and there is no asset test.
Speaker5: So you can’t just move those dollars into a different account under his name, like a trust or anything. No, I can’t huh.
Marcy: Well specific trust. Yeah. Yeah. But if I were making a decision for my niece or even for one of my own kids, I would actually look closer at an able account than I would at a special needs trust. Okay, I’m not saying that’s the best option. It’s just I would prioritize exploring an able account over a trust.
Speaker5: Because it’s almost like I shouldn’t really even tried to get the disability account with the medical assistance. It’s just complicated.
Marcy: It is absolutely complicated.
Speaker5: Because he has he has he’s blind, partly blind, and he has brain cancer. So it’s like he can’t he can’t work right now. Anyways.
Marcy: Yeah I mentioned a spend down earlier and it is a possibility. It is not the best possibility, but it is a possibility. It is an option.
Speaker5: What’s a spend down? What’s a spend down?
Marcy: Another hour. Can of worms. It’s very similar to a premium or a deductible. If you’re over income for MA as a person with a disability, you spend down to a certain amount. So they say you earn this much. Let’s say you earn $1,000, but you’re over income by $200. So therefore you have to contribute towards your health care $200 per month. And then MA will kick in. There’s a lot more to it and I am happy to go into that. But that’s either a call the Hub or let’s talk about that later so that Jeff can turn off recording and yeah.
Speaker5: Yeah, maybe we can chat later. Yeah.
Marcy: Um, it’s it’s got some nuances to it. It’s another one where understanding how you use healthcare is like vital. It’s necessary. And given brain cancer is in there, obviously healthcare is hugely important.
Speaker5: Oh it’s huge. That’s why we did the whole security. So yeah.
Marcy: Absolutely.
Speaker5: Absolutely. Yeah.
Marcy: All right. Last questions I don’t know that Jeff needs any more soundbites of me, but we agreed his job is to make me sound good. So. All right.
Shane: Well thank you guys.
Speaker7: Thank you so much. Thank you Shane.
Shane: Thank you for hanging out with us, Eric. Thank you. Emily.
Marcy: Thanks, Eric. Thanks, Emily.
Speaker7: Good night. Bye.
Shane: Awesome. We’ll follow up with some information. And again, this is all available. For more consultation if you ever need. So feel free to reach out anytime.
Speaker9: I really appreciate you guys. Thank you so much. This has helped tremendously.
Marcy: Good to hear that makes my day. That makes my week.
Jeff: What a wealth of information. And be sure to check out the links of all the resources in the show notes.
Be sure to contact your state services for the blind, your voc rehab and find out what they can do for you. Live. Work. Read. Succeed.
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Jeff:
To find out more about all the programs at State Services for the Blind, contact shane.desantis at state.mn.us that’s s-h-a-n-e.d-e-s-a-n-t-i-s at state.mn.us.
[Music] [Transition noise] –
When we share-
What we see
-Through each other’s eyes…
[Multiple voices overlapping, in unison, to form a single sentence]
…We can then begin to bridge the gap between the limited expectations, and the realities of Blind Abilities