The ONLY podcast to cover the ins and outs (and everything in between) of the secondary transition process for families of students with disabilities! Hosts Meghan (Smallwood) and Patrick (Cadigan) serve as supportive guides, leading families step-by-step up each rung of the transition ladder.
Also check out our parent website: https://www.postsecondarytransition.com
021. Transition 101: Navigating Supplemental Security Income (SSI) for Young Adults
•Meghan Smallwood; Patrick Cadigan•Season 1•Episode 21
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20:28
Updated links 11/9/2024!
Hosts Megan (Smallwood) and Patrick (Cadigan) continue climbing the ladder by discussing the complexities of Supplemental Security Income (SSI). They lay out how adults may receive monthly payments, how eligibility starts at age 18 and includes automatic Medicaid. The conversation also covers preparation for SSI applications, the importance of housing agreements, and the role of a representative payee to manage funds. Join the conversation!
Episode Keywords: Supplemental Security Income, monthly payment, Medicaid eligibility, housing agreement, food and shelter, representative payee, medical assistance, DDA funding, transition specialist, ABLE accounts, special needs trust
Links: Supplemental Security Income (page) Acronyms & Definitions (page) Social Security (site) Supplemental Security Income (site)
To download a copy of a transcript for this episode or any of our previous conversations, click here. Also visit our Podcast webpage to find links to all of our other discussions; go to www.p2transition.com. Additional information about post-secondary transition can be found at our website. The Post-Secondary Transition Podcast Facebook page. Visit our YouTube Channel to find additional video resources. Intro/Outro and Ad Music by Oleksandr Stepanov & AudioCoffee from Pixabay. Transition music by Joseph McDade from Transistor.
Okay, Meghan, I have hit the record button once again. Boy, I'm really proud of us.
Meghan Smallwood:
All right, welcome back, everyone. We're here for the Post-Secondary Transition podcast, where we like to have conversations around the ins and outs and everything in between of the transition process for families of students with disabilities. I am one of the hosts. My name is Meghan Smallwood, and I am a public school transition coordinator. And my co host is...
Patrick Cadigan:
My name is Patrick Cadigan. I'm a public school special education teacher. And before we begin our conversation, what we'd like to do is to give our listeners a definition of what we're talking about. So post-secondary transition, it really focuses between ages 14 through 21, and really helps to answer that question of what do you want for your child after they leave school? Right? We're looking to help answer that question by asking parents to think long term; milestones ahead of you, using the research that you've done, the resources at your disposal, the goals you have.
Meghan Smallwood:
Right, and how do we define long term? Well, what do you want your child to do after the school bus stops coming? That is different for everybody, we know that. But, it's a, it's a completely individualized experience. Along with that individuality can come loneliness, and in some cases, a sense of isolation. It's a really unique experience. But there are other families who are going through this probably at the same time you are.
Patrick Cadigan:
And along that journey, there's milestones that you need to focus on. Some of those are built around timeframes. Others can be your own timeframe, when you're comfortable and when you're ready. But using your child's school experiences will really help while doing the research, using the resources at your disposal, your special educator, your general education, teachers, school administration, or if it happens to be supported your school transition specialist. And also don't forget about outside agencies, it's a lot of information, there's a lot to consider. In many cases, the answers will not always immediately present themselves, there might be some give and there might be some take. And there will be things that you do that might not have that desired outcome. Now trying to do it all at once can really feel consuming. So we're here hoping to help clear away some of that fog.
Meghan Smallwood:
To help clear away some of that fog. We're gonna continue our focus on one of our 101-style conversations to help you families understand the complexities of the transition process. And today, we're going to focus on one of those really complex topics, SSI, or Supplemental Security Income, which is an offshoot of Social Security.
Patrick Cadigan:
So diving into this conversation, then, Meghan, what is SSI or Supplemental Security Income? If you were to give a definition to brand new family that was coming into this process, how would you explain it?
Meghan Smallwood:
So SSI and just another acronym, which, you know, we have on our list on our website, it is a federal program that provides a monthly payment to those qualifying individuals with disabilities. It is not the same as SSDI, which can often be confusing because you would think SSDI, Social Security Disability Income, but no, it's SSI, an individual with a disability can apply after turning 18 years old. Eligibility for SSI does include an automatic eligibility for Medicaid, which will be needed for DDA. So it really will help in the long run.
Patrick Cadigan:
So what will SSI do? Or in other words, how does it help families?
Meghan Smallwood:
So SSI will provide funds to your young adult every month, and it's just a nice extra income that can help support all the needs of your young adult.
Patrick Cadigan:
How much do they get?
Meghan Smallwood:
It goes up every year, which is even better. So in 2023, it went up to approximately $914 a month, if you get the full amount. If a person isn't paying for food and shelter, the most SSI they can receive will be a little less; approximately like $600. The food and shelter to show that they're paying for that can be covered by a housing or rental agreement that the individual has with their family.
Patrick Cadigan:
Okay, I'm lost. Why would, why does a housing rental agreement matter?
Meghan Smallwood:
So that Housing Agreement will show that they're going to pay their share of household food and shelter costs just like an adult would, but we'll get into more detail about that later. Let's, let's revisit that one.
Patrick Cadigan:
Got it. So what, what can families use the funds for?
Meghan Smallwood:
So specifically from the Social Security Administration website, they say that you must use those funds to take care Have the beneficiaries day to day needs for food and shelter. Okay, that's the first and foremost, so paying for their part of the groceries every every month every week, you can also use the money to cover any medical or dental care that's not covered by health insurance. And I think a big portion that families use it for or their clothing and recreation. So I know, you know, obviously clothing, that makes sense, but recreation, I know families who have used it to pay for vacation pay for their plane ticket to go someplace pay for a camp pay for an amusement park. So as long as it's benefiting the young adult, and you're documenting that it's for them, then it's okay. You need to have no more than $2,000 in a bank account with that your young adults name on it at all times. And I'm going to repeat that a few times during this podcast because that is very important to know. So if the money is not spent every month and it's accumulating, you need to make sure that you have someplace else to keep the money, such as a special needs trust or an ABLE account where that it is Okay for the money to build up there. Just to touch on some other needs. I know we said about food, housing and clothing. personal comfort items. I know some families have used it for items like diapers that they might need, or chuck's they might need other kinds of toileting essentials. Actually, I know families that have used it too. Like if the young adult obviously is living in the house, they can help contribute if let's say a new microwave is needed. Any type of appliance or furniture, home furnishings, it's going to benefit where they live, it can be used for that. Okay, the most important thing, though, is and we will get to it a little later about documenting each month where the money is going.
Patrick Cadigan:
So what should families be doing? How would they prepare before applying for SSI.
Meghan Smallwood:
So again, make sure there is no more than$2,000 in any account with your child's name on it. I've come across situations where maybe a family member passed and left a large sum of money to a child. And that made them ineligible because there was too much money in a bank account with their name on it. And that's any, even if they have a joint account with you, the parent, they cannot have their name on it with more than $2,000. So that's why we've talked about it, we have information on our website about ABLE accounts and special needs trust, it's important to have those set up if that's your situation, it's also important to consider creating a housing agreement before you go in.
Patrick Cadigan:
What is a what's a Housing Agreement?
Meghan Smallwood:
So that Housing Agreement is going to show that they are paying their share of the household food and shelter costs. So if the young adult lives with their family, then you know, and there's four people in the family, they would have to pay 1/4 of that. If you don't have a Housing Agreement, then that's considered free room-and-board. And that would technically be counted as a source of income for your child. So that would in turn lower the payment. So just creating a simple Housing Agreement, and you can just write it up and have a signature from you, and try and have your young adult sign it and have that in place before the appointment would be really helpful. And if your young adult is not paying rent yet, but you intend to have them start paying as soon as their SSI check starts coming. You can show their Social Security worker your rental agreement and state the intention to start paying rent once it's approved.
Patrick Cadigan:
Is there like an ideal time when they should start paying rent?
Meghan Smallwood:
I know parents that have retroactively asked for it. If they had decided to go in a little after they turned 18. And they realized, "Well, we've had this gap of time" and they technically could have still been paying rent. So I mean, there's no wrong time to do it. But I would suggest if you are going for your first appointment to have it prepared so that you don't have to worry about any back pay or any issues.
Patrick Cadigan:
Okay, so a family has set up the appointment, right? What do they need to bring for that appointment?
Meghan Smallwood:
Okay, so they set up the appointment they had to call the local Social Security Administration office to make their appointment. And if you are a family from Howard County, our county, we do have that link to the local office on the website, but it is the same number. It's a one 800-number for everyone. And you make the appointment. I will also throw in here that parents have told me to wait, do not call on their 18th birthday. Wait a little bit. Usually I'll tell parents to wait maybe the end of the month of their birthday or even the start like the month after their birthday. Because with the system they need a little of time, there was something with the system that where they needed the time to recognize the child as a young adult now, and it just created all kinds of issues if they went too soon.
Patrick Cadigan:
I seem to remember that right that didn't they tell us that if they if they applied too early, then the family income would be essentially absorbed into the person applying for SSI. So effectively they would be making what the way that they would be recognized is, is that they are making as much money as the family.
Meghan Smallwood:
to wait. All right, so what happens after the appointment? Okay, so well at the appointment, you have to make sure young adult comes with you. They want to meet them, they want to see them. Typically, families are asked to bring their social security card or number, birth certificate, bank statements for any checking or savings accounts with their names on it, that Housing Agreement. And then they will ask for the school information and the doctor information because typically, Social Security will send a general packet to the school and to the doctor that needs to be filled out just asking questions about the level of need and support that your young adult receives. Once that is all sent out. And you know they've received all that information. That is when they typically will make a decision about eligibility. But if they decide that they need more information, determine eligibility, they may ask you to go to a doctor with your child selected by them. So actually, one of our former podcast interviewees, Pam Parris actually shared her experience with her son, because they asked him to go see the elected psychologist, just to verify the need for eligibility with Social Security. And she explained the process, and she said, it was pretty straightforward, and they determined them eligible. But Social Security just needed to have their own paperwork to confirm.
Patrick Cadigan:
So again, it always kind of goes back to that the difference between entitlement versus eligibility, you have to prove eligibility, this is not something that you're just handed.
Meghan Smallwood:
Correct. And it really does come down to a lot of the documentation to to show the need. You know, it's sad that you have to prove that you really need this, but that's what they need to see.
Patrick Cadigan:
And then what do families to after they're approved? What's the next step?
Meghan Smallwood:
Okay, so they would get their final determination made, and a letter would be sent to them in the mail, hopefully, an approval letter, if it is a denial letter, then you can file an appeal with Social Security. And they'll send you the information on how to do that. Once you do get that approval letter, though, you do want to contact the Department of Social Services to apply for medical assistance for your child, that will be important for DDA purposes, if your child or young adult is DDA eligible at 21. They need to have Medicaid and it's Okay, if they're still on your private insurance. Medicaid can sit as a secondary insurance and, you know, it just needs to be there, they need to see that they're eligible and receiving it to access the DDA funding. I would make sure to follow up with the Department of Social Services as soon as you can after you get that approval letter, because again, I know families who went back and forth weren't able to get the Medicaid in place, you know, and when you want approached, and then they're getting very nervous, because there's the possibility of losing funding if you don't have everything in order, and it can take time, unfortunately, I've heard different stories from families. And I don't know if it depends on the representative that you're working with from Social Security. But some families it's been a very easy process. And right away, they get the letter. Other families, it's been moms going back and forth. So once again, this is just another milestone that you really need to be an advocate for your young adult to make sure things are moving. And don't be afraid to ask for help check in with other parents who have gone through the process just to see what they might have to say about it. Ask if you have a transition specialist at school, ask them for any you know, information or support, though, again, you're not alone in this.
Patrick Cadigan:
Someone is approved for SSI and they start receiving money. How do they, do they just get the money and then they can do whatever they want with it or how do they track...is there like a tracking process?
Meghan Smallwood:
Yeah, so once they are approved, they will ask you to select and they might do this at the initial interview. I'm not exactly sure, but the rep payee or representative payee will be selected and it's usually parent and they are in charge of tracking the payments every month for the money. The person will be named at the appointment and manage the monthly checks. And then they show him report this back to Social Security annually of where the money went each month.
Patrick Cadigan:
So it's essentially, kind of operates as an accountant, it sounds like.
Meghan Smallwood:
In a way, yeah, there's usually an annual form that's sent to document the expenditures. And I know other parents, Pam Paris, who is so open about everything, which is so helpful, she shared with me how she tracks it. And a lot of times, it doesn't change much per month, you have the food, you have the shelter, that was, you know, the money spent, you might have, I think, like a utility bill, if they're helping pay for that. But then there could be other things that come up, like I said, they're going on vacation, you might have money spent towards that, you just want to make sure it's documented out so they can see what the money is being sent or used for, and if any, is being saved, and just making sure that it's not going above $2,000. In your account.
Patrick Cadigan:
I am curious. So if it's not a parent, who else could it be?
Meghan Smallwood:
I guess in other situations, like if there was an agency provider that is working with the student, you know, for whatever reason, they could be selected, it could be another family member. But more often than not, it is apparent. And also, I will say, I know, banks can also be a little difficult when trying to set up an account after they're 18. I know a family that's had to bring the letter from Social Security to verify that they were Okay to set up the account with them. So just keep that in mind. Maybe if you're able to open an account prior to 18, to have that setup with your child, it will make the process a little easier.
Patrick Cadigan:
And so like any other tips and tricks that you can think of that families should be considering while they're going through this process?
Meghan Smallwood:
Just breathe. I know that it can be a big headache. And I always feel awful when I'm talking to parents, and they're getting the runaround. And you know, they it's hard to get in touch with someone from Social Security. If you have any questions or any follow up, you know, issues. So just stay on top of it. And try not to let things go too long if you don't hear information, or if you're unsure of what's going on. And then that piece of the medical systems to just, I would say if you can go in person to the Department of Social Services, because I've know parents who have had a lot more luck getting in touch with someone they're then trying to make calls and get them so just stay on top of it.
Patrick Cadigan:
Well, I will tell you what, it's a nice segue into our Well, That's Helpful segment because playing off of this week's conversation, our resource, it can actually be found on our YouTube channel in our playlist section. There will be a link in the show notes to that. It's a series of videos posted by the Howard County Autism Society, so we want to thank them for that. These videos discuss SSI with the gentleman who many in our community will know. Mr. Michael Dalto, Mr. Dalto is considered the expert when it comes to SSI. And we've had more than a few families mentioned his name and the expertise he brings to the conversation. So we think that this playlist is really worth looking at. The series is broken down into four parts. And it's obviously good information because the series itself collectively has been viewed over 25,000 times. So we really do feel like that this is going to be helpful for families.
Meghan Smallwood:
Yeah, he is very, very knowledgeable.
Patrick Cadigan:
All right. So I think that we're good. I think we've covered quite a bit there.
Meghan Smallwood:
Yeah, I know it's a loaded topic, but...it's helpful.
Patrick Cadigan:
Well, I'll tell you what, follow the information from this and other conversations that we have in our show notes. Please, like follow and share out this podcast so that other families can benefit from the information that we're pushing out there. Check out that YouTube channel, we have videos on all of our conversations, including doing some of the legwork for you by curating the videos of the topics that revolve around transition. We've created playlists that also cover guardianship, alternatives to guardianship, ABLE accounts, and there's still going to be more to come. So please subscribe over there as Well. And then finally, check out our website. It is chockfull of information around the transition process. You can also find our contact information there. And we recently started to post out a blog that covers aspects of the transition process. So you can go check it out at www.post secondarytransition.com. And man, we are just covering all the bases.
Meghan Smallwood:
We are. We're on fire.
Patrick Cadigan:
All right, fantastic. Well, then, it sounds like for the next discussion that we're gonna have. Are we back to having another interview? I think we are right?
Meghan Smallwood:
I think so. And I think it's gonna be a good one with a former transition specialist.
Patrick Cadigan:
And we're actually going to go outside of our normal topics, which is to say that aren't we going to talk about, we're going to talk about our diploma bound friends, right?
Meghan Smallwood:
Yes, we definitely have some information on that group. So it'll be good.
Patrick Cadigan:
All right. Okay. So then we're going to call it and we are done. Thank you guys for joining us and we'll talk to you soon.
