Help! Navigating SSI/SSDI Applications and More (ep. 70)

Guest: Dani Page
§  SOAR (SSI/SSDI, Outreach, Access and Recovery) certified Retired attorney. Instructor on implicit bias in the space of disability
§  Juris Doctorate
§  Certified Family to Family facilitator for National Alliance on Mental Illness
§  SOAR (SSI/SSDI, Outreach, Access and Recovery) certified—for individuals with behavioral health challenges who are homeless or at risk
§  Presenter and facilitator on implicit bias in the space of disability


We learn:
SSI/SSDI/SSA - review (for full info, see episode 50)
Adult Function Reports - part of application - tips and instruction
Resources and info on Trusts for our loved one with disability:
ABLE
Spendthrift trusts or provisions
Pooled Trusts
Resource for employment help: Ability One


Links:
https://specialneedsanswers.com/poole...

https://abilityone.gov/

https://soarworks.samhsa.gov/

https://www.ablenrc.org/


Want us to cover a topic? comment to share?
Facebook page @Schizophrenia3Moms
@SZ3MomsTrenches -  twitter
Randye Kaye -Broadcaster, Actress, Voice Talent, Speaker, and Author (“Ben Behind his Voices”, “Happier Made Simple”)
Miriam Feldman – Artist, Mom, Author “He Came in With It”
Mindy Greiling – member of the Minnesota House of Representatives for twenty years. Activist, Legislator, Author (“Fix What You Can“)

Transcript

Copy Transcript Copied

SPEAKER_00 0:00

Any doctor that works with our loved ones really is just a snapshot in time, right? They don't live with them, they don't deal with them 24 hours a day, they don't see the decompensation, they don't see the unusual thing in Europe. They don't see the if not self-harm, just kind of sabotaging their lives. So this function report is what is going to fill in the picture.

SPEAKER_02 0:24

Danny Page, JD, is going to tell us all about the adult function report today. As part of part two of Help, I don't understand SSI SSDI. What is an adult function report? And even if the applicant fills one out, aka our loved one, can we fill out a third-party observer report to fill in the gaps? And how do we do that? This topic and more on today's episode. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide post West Coast All America with Miriam Feltman, Mindy Gryling, and Randy Kay. Finally, a place to talk about the truth. Well, welcome to this episode. This is episode 70 of Schizophrenia Three Moms in the Trenches. And we're so excited to bring back probably the most downloaded episode of our 70 episodes so far, has been episode 50, which was called Help. I don't understand SSI-SSDI with the wonderful Danny Page, who is a SORE-certified SOR standing for SSI-SSDI, Outreach, Access and Recovery. It's a SOR-certified retired attorney, instructor on implicit bias in the space of disability. And the reaction and the thanks to that episode were through the roof. And so we wanted to bring Danny back for a part two for a small review of what happened in episode 50. But of course, that's still available for you to see. And we're going to talk about a lot more, including adult reporting. And we'll find out what that is in a second. And there's a whole lot more coming. So thank you so much for asking for her to return. Before we do that, I just want to say hi to my cohorts, Mindy Gryling and Mimi Feldman. If you're watching on YouTube, it says Miriam, but Mimi is the nickname, and that's what we call you. We are three moms with three chronologically adult sons with schizophrenia who are good crazy. Thank you so much. Who are at various stages of uh reclaiming their lives. Uh uh full disclosure at the moment, my son is spiraling. Just one of those things, one of those things that is I taught a NAMI family-to-family uh training over the weekend to train 13 new teachers. And if you don't know what that is, we have an episode on that, or contact NAMI.org under education to find out about a free course you can take to educate yourself about various aspects of mental illness and communication and and so forth. It's a it's a wonderful course. I try to teach it at least once a year. We train new teachers. But anyway, you know, we were all talking and we agreed that the roller coaster continues, but the at least the second time through the roller coaster, you have an idea of what might be coming. Like I know we're in a spiral and it's either gonna go this way or that way, and we'll find out uh all the facts aren't in yet. So that's where we are. I think Mindy's son's doing really well right now. Mimi, how's Nick? That is cool.

SPEAKER_04 3:56

Um he's doing well.

SPEAKER_02 3:58

Okay.

SPEAKER_01 3:58

So that's I wanted to comment though, Randy, on that second time around that you're in right now. Second. Or well, there are multiple or repeat anyway, or say you do know what's coming, but I think each time um it takes a little more out of you because you do know what's coming. Oh true, true.

SPEAKER_02 4:20

It's uh, you know, it's it's trauma again. And for him more than for me. I think he's kind of desperate right now. So we'll see what happens. I hope that uh next time we have an episode, I can say, okay, we're back on track, because that could happen as well. We just this is what you do here. We live in the moment, we do the best we can. And the day I found out he was spiraling, I still kept my pedicure appointment because there was nothing I could do. And I had a half an hour of relief. So if you're a listener going through this as well, I'm sure you can understand that. There's times we just have to say, I've done all I can for the moment. Let's see what happens, and I'm gonna take care of me and the rest of my family. So, with that in mind, there's one more thing we wanted to mention. We are just excited to let you know. A lot of people have asked us if we can come to speak at their events, and we have done it individually. And every time we go, people go, Well, where are the other two moms? So, you know, I think maybe you had people whispering in the elevator. So yeah. So we, if you are interested in having all three of us on your panel for your event, or to come speak to your local hospital about including family in the process of mental illness recovery, or if you want us to talk about stigma or any of the things that we talk about here on the podcast, we prefer to go in person, but uh, we'll also do Zoom, just tell our stories, put the human touch. We are available. And at the moment, our website is where our podcast is. But you can always contact me, randy at randyk.com. That's spelled, you see how it's spelled, but if you're on YouTube, but otherwise it's r-n-d-y-e, k-a-y-e. And we always show it at the end of every episode and talk about it. So please contact me if you'd like the three of us to come and speak, because we would love to continue to spread the word. All right, let's bring on Danny. Danny, would you please here you are, Danny Powell, retired attorney, instructor on implicit bias in the space of disability. Hey Danny, thank you so much for that last episode. We learned so much. And I know that our listeners and viewers did as well. And we've invited you back for a part two. Can you give us kind of a I know you're gonna do a quick review, but what else are you gonna talk about today?

SPEAKER_00 6:53

So I want to do a quick review about what the SSIFSDI process is, the difference between the two programs, and also the difference um Social Security Administration and the other state participant in the SSA. And then the part that I'm kind of excited about sharing are are twofold. I want to talk about what the adult function report looks like and how family members can get involved with it too, because I don't think SSA does a good job of letting people know that there is an avenue for families to get involved. And then finally, I want to give you some miscellaneous things so that while you're waiting to see what happens with your loved one's case or whether it's granted or not granted, it may be other um avenues that you can pursue in support of your loved one. I think give us a breath too. I mean, I think as parents um or siblings or any of that, it's exhausting. And so it's kind of a little bit more of a happy moment to discuss than something that keeps you in the trenches.

SPEAKER_01 8:04

Absolutely. I have to say, I have to say, Danny, I've got my notepad ready because Randy's right. Your last episode, I learned more myself than any other episode that we have had. And this adult function report that you're gonna tell us about. I've never heard of that. And my son has been sick for 21 years.

SPEAKER_02 8:29

So, Danny, you practice in Colorado mostly, but a lot of what you're going to share uh can be either adapted or applied to the states that we're in. And so uh we are so excited. We'll do we're gonna just give the stage to you. If we have any questions, we might pipe in, but otherwise go for it. And thank you so much.

SPEAKER_00 8:53

So now you need to advise me of something. Um, I just do the share screen, correct? For those of you who are watching.

SPEAKER_02 9:00

Share the screen up there. Now if you're listening in your car and you can't see Danny's screen, she's gonna describe it as as best as possible. And you know, we'll do our best. This might be something that if you wish, you can go back and say, okay, wait, you know, maybe I need to watch this one on YouTube, but uh I'm sure the audio version will will teach you a few things as well.

SPEAKER_00 9:27

So um, I just want to explain one thing. The reason this is applicable in all states MDC is because it is a federal program. So the federal program really should be similar in each state. I think the one thing that is not similar is the disability determination, which I will explain in a real quick review. So the first slide that I've got up on a PowerPoint is some acronyms and form numbers that will be used so that you can refer back to them. I'm just going to go through it quickly so those of you who are listening will have an idea. But I do also want to tell you that throughout the slideshow, I do give websites uh that you can click on and um find the information, but don't worry about that because the buzzwords are so common. If you put it into a Google search, you'll come up with the site anyhow. So do not be concerned that you don't have anywhere to write down the site. So I did in alphabetical order the acronyms and form numbers versus in the order that I'm going to talk about. So I'm just going to fly through it really. Activities of daily living are called ADLs. Disability Determination Services is DDS. There are two function reports that once you have been approved financially for a disability, will come your way. And that is to determine what kind of abilities are left, despite the fact that you have a disability. Are you able to work or are your disabilities so strong that they limit that ability? The second one is a form, it's called a 3380. That's a third-party adult function report. And that's the place that you get to actually participate in what is told the Social Security Administration. RFC stands for residual function capacity, and that's basically what I was just talking about. You know, whether you have a disability, you don't have a disability. What is left that allows you to participate fully in life? SGA is for substantial gainful activity. It talks about the amount of money you're able to earn despite your disability. Social Security Administration is the SSA, Social Security Disability Insurance is SSDI, and Supplemental Security Income is SSI. So let me do a real quick overview of the SSA and disability programs. So there's two of them: supplemental security income, which is the FSI, and then also Social Security Disability Insurance. So what I want to say here though is we all know having schizophrenia or any other mental illness does not necessarily mean you're not able to participate in life, right? I mean, we've all heard of those hopeful stories, the hallmark outcomes, um, movies that say, oh yeah, everything's gonna be fine. So there are some people who actually deal with their mental illness and are able to participate in life. So that's the reason a diagnosis alone is not enough. It has to be a diagnosis and the inability to perform enough work that can earn you $1,470 a month. So the two programs, SSI is basically a needs-based program, and really it's the largest welfare program that the United States participate in. Social Security Disability Insurance is an entitlement program that is really based on the fact that you have been able to work and have paid money through FIFA into the system, and so now you're claiming your insurance. It's in many ways a friendlier program without quite as many um turtles to jump.

SPEAKER_02 13:36

But you do have to prove disability to have certainly do, yes.

SPEAKER_00 13:41

So the Social Security Administration is the umbrella administration that administers the disability benefits. They're a federal agency, which in theory means that you should be able to get the same result no matter what state you're in. And I'll explain to you why that's not accurate, but we'll move on. Um, they make the very first determination as to what's happening. Are you financially eligible to qualify for SSI or SFDI? In both instances, they're looking at that um game flexity, substantial gameplay activity. Are you able to make $1,470 a month? For SSDI, they're looking to see if you've paid enough money uh into FICA that you would qualify for a certain amount. So there are two government components that come into play: Social Security Administration, it simply looks at the financial piece. Then disability determination services or DDS is the state agency that makes disability decisions for Social Security Administration. That's why I cannot tell you that what I learn in Colorado will apply for you across the country. Some DDS programs are kinder than others, some are harder than others, some are just overwhelmed by their workloads and really uh would prefer to deny something and let you go to court instead of denying it. And I guess what I want to say is I don't think it's malintent. I do think it's being overwhelmed. And you can imagine the number of applications they get every single day. And so it's very difficult for them to know all this information. They're supposed to be trained in making these medical decisions, but they are not doctors, they are not medical students, they are lay people. They can go to a doctor for some information. In my experience here, that rarely happens.

SPEAKER_02 15:49

So, so just so SSDI is administered federally, but your eligibility for disability is through a state agency, right?

SPEAKER_00 16:00

Right. So the financial component is determined through social security administration, and then the disability piece is looked at by the state agency that's funded by the feds. It's yeah, I never knew that before I started in this world either. So there's four criteria for um qualifying for uh the programs, and the one I'm gonna function on is called the functional information, but I'll go through the four pretty quickly. One is unable to engage in substantial gainful activity, that SGA I've talked about, uh, which is $1,470 per month, and that's before taxes. So, you know, they come home with about $900 a month. The other is a medically determinable physical or mental impairment. That condition must be diagnosed by a doctor, not self-diagnosed. And we all know how difficult that is in the mental illness arena. Many of our loved ones refuse to be treated. Uh, number three is duration. It must have lasted for at least 12 months or will last for an additional 12 months. The fourth part is what's called the functional information, and again, that's what I hope to go over today. The applicant must also demonstrate a significant functional impairment related to his or her conditions. So the medical determination part, trying to get this out of the way, um, is looking at the functional limitations and assessing whether there's a severe impairment. Again, people that have disabilities still may be very successful in their social lives, in their work lives, be able to work, be able to make um income, but the problem is for those who really have limited abilities to participate in life, both in the workplace and in their private lives. So, what we're going to be looking at, and if you do have a chance to listen to this again or see it in writing, there are four areas that I think are really important for you to keep in mind when we're talking about mental illness. So, restrictions of activities of daily living, which I will explain in detail in a moment. Difficulties in maintaining social function is so tough for our loved ones. Difficulties in maintaining concentration, persistence, and pace as they relate to the ability to complete tasks and episodes of decompensation, which unfortunately many of us are also very aware of.

SPEAKER_01 18:43

How do they determine the social functioning? I could see we're decompensating and daily living activities, but how about that? How do they determine that one?

SPEAKER_00 18:54

Yeah, and I will go through that with you. So you're going to go over that. Oh, thank you. I appreciate that. So let's talk about this function report for adults. It's a 10-page document that will be sent to you if your loved one has already been told financially they qualify because they don't make enough money. So Social Security Administration looks at that very simple question because they have access to our earnings uh through Social Security Administration, so they know how much money we make. So if they decide, yeah, you're not making enough money, so obviously you do need help from us, then they send it to that state agency, right? The disability determination services. And they will, based on the application that the loved one has filled out, they'll start gathering medical records and try and put them together, get an idea of where it's going, what your case looks like. Most states, not all states, so I'm just gonna pretend it's all states, but most DDS offices will send out, will paper you with pepper you with paperwork over the next several weeks after they've had a chance to look at the file. And it's because they want to look at the whole picture, right? So for the first time, everybody gets a chance to talk about what that whole picture is. I think I've got a couple of problems with their looking just at the medical. Any doctor that works with our loved ones really is just seeing a snapshot in time, right? They don't live with them, they don't deal with them 24 hours a day, they don't see the decompensation, they don't see the unusual behavior, they don't see the, if not self-harm, just kind of sabotaging their lives. So this function report is what is going to fill in the picture.

SPEAKER_02 20:47

I just ask one thing. So this is a form, if your loved one, and by that we usually mean the person diagnosed with the illness, if they're aware they have an illness, they fill it out, maybe with the help of someone. Yeah. But what would it take? I know when I applied for my son, I had to get conservatorship before I was able to fill this out on his behalf because his thought was, I don't have a disability. Exactly. So in order for um, if someone's over 18, in order for a family member to fill it out, do they need to be guardian or no curator?

SPEAKER_00 21:26

Um, no. Um, the only reason you would need to do that is if the loved one is unwilling to participate in this at all. So I would tell you, with my son, you might fill it out, but he's like, I don't care about this, junk, you do it. So I will explain it. So there's a function report that will come out to the applicant, right? And this is the form that you're seeing is just the first page of the form. Again, it's 10 pages. The first two pages are instructions. I'm just trying to show you what looks like. That is for the person who actually has the disability. But then there's also one that's called the third party function report for I would say it would be us, typically the moms. Let's face it, we're more in tune with what's going on. Sorry if that was sexist, but I think it's true.

SPEAKER_02 22:18

Let's just say the the numbers are skewed that way, but there are plenty of it, there are plenty of involved dads and yes.

SPEAKER_00 22:26

Absolutely. You're so right. And so there is this other form that parallels exactly the same as the functional report that is sent to your loved one. On occasion they'll send one for you too but if not you can find it online at ssa.gov. All you have to do is put in functional report adult or third party function report and you'll be able to pull them up immediately online.

SPEAKER_02 22:54

Okay.

SPEAKER_00 22:55

Yeah. So there's five sections to this adult function report. And again they're exactly the same whether it's for the love the applicant or if it's us or a caseworker who's filling it out for example but really should be somebody that knows the ins and outs of the applicant. So not just a doctor who's doing that quick hit, but somebody who's spent significant time with them that can discuss in real terms and layman's terms what the disabling condition is. So the five sections are A through E, general information, just biographical right then B is information about your illnesses, injuries or conditions. The only thing I'm going to talk about on that today is that schizophrenia rarely is just schizophrenia. Schizophrenia again is one of those umbrella issues that has many other pieces underneath it right whether it's OCD depression anxiety and there may be physical limitations also including medications that cause um dyskinesia if that's how you pronounce it or thank you or if there's something off your hands and they tremor or fatigue or weakness. So those are also included within that section B that discusses illnesses, injuries or conditions. Part C is the one that we'll be talking about very heavily today. It's the information about daily activities. D is information about abilities. I am going to talk about that too after I get done with part C. Part E is the remark section and the purpose of the remark section is really where you've run out of room for anything you're responding to an A, B, C, or D. You can put it in the remark section. My opinion is there's very rarely enough space in any of this application and the story is bigger than what SFA thinks it is. So feel free to do an attachment. With each attachment you need to put in response to question number 20 for example so they know what they're tying it to. So let's go through a couple of these I'm not hitting everything. Once you know that this is coming I think it's really important to Google SSA listing of impairments or SSA blue book. These are the medical conditions that SSA looks at frequently in determining what's going on with somebody. So they will give you buzzwords. And I said it last time too as you know when you're taking a test in school whatever you spit out that is the same language the teacher taught you the better your grade. I feel the same way about this. The more you use the language they have put into their paperwork, the more likely they are to understand it and do something with it. So there are 14 chapters of disabilities listed in the impairment section of SSA and look I managed to circle number 12 which is mental disorders. So you will click on that and it will take you to various mental disorders. And 1203 is schizophrenia spectrum and other psychotic disorders. They give you a part A, B, and c and they use several words that they look at to see oh my do they fall into the definition as I recognize it delusions, hallucinations, disorganized thinking, disorganized behavior, understanding, remembering, interacting with others. I would suggest that you print out these couple pages either from the slideshow that you can have access to or just go to the ssa.gov and look at these words that they use to be familiar with them. Like I have it sitting right next to the downloaded copy that you've made of the adult function report so you can remember to stick a few of those words in with every question that's asked. So even though it's number 20 so part D, and I told you I was going to hit heavily on part C, but the reason D is so relevant to me personally, I find this the best place to start on this form.

SPEAKER_02 27:32

And just if you're if you're listening and not watching section D is information about abilities. It starts with things like lifting and squatting but it goes on to things that are more familiar to us.

SPEAKER_00 27:44

Go ahead Danny Yeah exactly it's page eight of the 10 of the adult function report. So as Randy just said a lot of it's physical and don't ignore those because certainly there are times when people have schizophrenia along with other maybe physical disabilities although I personally think mental illness is physical because our brain is part of that. But we're going to look at as physical and mental so there's like four kind of columns that they go through the ones that typically I think when you're dealing just with schizophrenia or schizoaffective disorder memory completing tasks concentration understanding following instructions using your hands getting along with others so then under that part 20 there's several subparts where they're allowing you the opportunity to go into it further. So let me give you an example part D says for how long can you pay attention? There's one line that to me doesn't leave me who's supposed to be able bodied and able-minded to fill it out. There are times where distractions are serious for me right and I can't finish anything. So be sure on that type of question you can say the majority of time I can pay attention for three hours but then there are times where I lose it in 20 minutes. Don't let them limit your answer. E is do you finish what you start?

SPEAKER_02 29:20

A DHD comes to mind yeah and they get you know if you're not looking they give you just like one half of a line to answer these things.

SPEAKER_00 29:30

So you're saying continued on part E where the remarks are right or on a separate attachment because you're going to be faxing this in you're not scan you're not putting it in through the a computer system a portal or anything.

SPEAKER_04 29:46

I have a question.

SPEAKER_00 29:47

Of course Mimi.

SPEAKER_04 29:49

You know my experience with forms and things like that always beacon beacon because people aren't going to read it. And so and boy we have all run into that in terms of giving information to doctors about our ill kill. And so I just wonder if if it gets really long in terms of what people are filling out do they have to read that or is it going to just get thrown aside of I'm not looking at this?

SPEAKER_00 30:17

I a good question. This is the most important form that you're going to fill out because it gives an opportunity to see a fuller picture. Again those buzzwords are really important because buzzwords they recognize in fact I would go so far as to bold the buzzword so they can look for that and go, oh this is something I recognize and put their attention there. But because they use this form both to catch us and to allow us to provide the fullest story I think it is important. Concise in that you're providing relevant information but for example let's say for how long can we pay attention you don't want to say well yesterday I was able to pay attention for three minutes. So what you're doing is kind of looking at the typical or worst case scenario not the best case scenario and the irony of this doggone form is let's face it with mental illness there's so much denial about what their abilities and disabilities are and what their accomplishments are and their lack of accomplishments. That's why there's a third party disability or function report that we get to participate in. So I always say when your loved one is doing this let them write whatever the heck they want to write. If they come to you for help it's fine to help them absolutely fine and then in the remarks section you are going to write my son my daughter my spouse my whatever asked for help and so this is how I help them was to listen to what they say and I wrote it down for them. But if they want to write it it's fine. They do recognize that those with mental illness are very poor medical historians and life historians. And I think it does show that extreme difference that they need to take into consideration and it's confirmed by the doctors who the therapy the treatment the medications it it makes the full picture again.

SPEAKER_01 32:25

Okay so that third party report is extremely important and they do look at oh they absolutely do especially when they see that 20 says oh yeah I can do everything I can lift squat bend read understand so then they will definitely go to that third party I have a question about the third party so I've been trying to figure out why did I not do one of these and then maybe I did and I just can't remember all of it. But on the other hand uh qualified for FSBI which um when it was close to third I think it was possible to deny it's going to be a perfect but what we finally gave up um I put up in a program where we had wonderful staff they did built him very well so I'm just thinking you said also a casework who could do it. I'm thinking they did it and they knew him well enough and they didn't I didn't that's why I didn't know about it. You think so?

SPEAKER_00 33:28

I think that's possible Mindy the other thing that I think is possible from 20 years ago is they may have been willing to accept the medical documentation because he was in a setting where it was more or less total care. And so they may not have needed any of this from you. But I I don't I think under this administration they more readily and more freely provide both forms to families but it still worries me that that's not the case and again it's state by state and some states are not nice other states are nicer. So that's why I really want anybody that's listening to this to go online and pull down the third party report so they can do it regardless if it's sent to them or not.

SPEAKER_02 34:16

Okay so it'll always be available it just may not be sent to you. Exactly download it and send it in even if they don't ask for it.

SPEAKER_00 34:24

Exactly great okay so the thing I kind of need to back up a little bit I'm not sure if I said it because you see I've got ADHD and I talk a mile a minute. But the part 20 the information about abilities to me is the roadmap of how you're going to answer all the other questions and allows you to know what's coming up in all the other um sections prior to D. You need to be very careful about being consistent when you answer the questions. Like in one place you'll see that they ask about do you take care of anything like a dog for example you need to make sure that you say that you can take care of that but that doesn't mean you can take care of yourself. There has to be explanations of how you're able to take care of a dog but not yourself. So just try and think out of the box a little bit and go, huh they may think of that and go this is a typical kid he can do anything. So for how long can you pay attention E says do you fish what you start well hit or miss if I'm feeling well if I'm not overwhelmed if people aren't yelling me or calling me names all they put here is yes or no. Exactly. That's all that's on there is a yes or no do you finish what you start like who even without a mental illness can give that a clear yes or no I agree and that's why the story has to be retold or the question has to be written by rewritten by you or your loved one if they're you know on a particularly good day where they feel like they're able to share some of this. You know I think this whole thing is just so discouraging to our loved ones it's how difficult it is to say no I can't do this I can't do that oh crap now or um I I think it can be a downward spiral. That's why I say to them don't spend a lot of time on it just go through and put no no no yes yes yes I don't think that because we don't need them to be in any more difficult to use and you can explain that too when you fill out yours that he was spiraling down so I encouraged him to just check the boxes and I would do the rest.

unknown 36:31

Yeah.

SPEAKER_00 36:33

So you know just um are you going to read these questions out loud so people know what they are okay yeah so I'll just do a couple more how well do you follow written instructions how well do you follow spoken instructions you're not hearing voices probably better than when you are right how well do you get along with authority figures but that to me is not really necessarily authority as it is as much as human beings I mean I think if you get along with peers you can probably get along with my experience with my own child. But anyway those are questions and again yes or no and no room for it to say anything. Have you ever been fired or laid off from a job because of problems getting along with other people that's a dicey question. It seems to me that when you don't perform well you're not getting along well right my son would tell you he's never been fired. He's probably been fired 20 times in his life and he just doesn't get it. It's kind of like well I guess it's time for me to go home.

SPEAKER_02 37:37

I guess they don't need me today.

SPEAKER_00 37:39

Yeah exactly and they don't want me in a month so now we are going to jump back up to section C, um, which is information about daily activities. So D was about abilities and the daily activities section is really about inabilities. So what we're talking about with daily activities are the things that typically you and I do we sleep we brush our teeth we wash our hair we shower we feed ourselves we go out and pick up the newspaper we still get newspapers we go to work we go to medical appointments we socialize unfortunately for our loved ones there are very few of those in my opinion that they consistently participate in. Agreed so number six the very first one describe what you do from the time you wake up until the time you go to bed. Oh my gosh and there's three lines right yeah I think that um it would take me more than that but a couple things I want to point out to you in relation to that is I don't think any given day is exactly the same for our loved ones. I mean I I watched that thing where different medications or different stimuli have effect on the sleep so my son for example may go to bed at 11 he may go to bed at three he may get up at 11 in the morning but not actually get out of bed until one so I think this is definitely one of those that needs supplemental writing but I think what you do is say my days vary maybe two days a week if this is accurate I'm just giving you examples two days a week I find that I am able to go to sleep at 11 I'm so fatigued I don't sleep well so I might not get up until 10 in the morning takes me an hour to get out of bed I go downstairs I have cereal my mom tells me I smell so I take a shower I brush my teeth I go on the computer and play games I go to a coffee shop that's only a block away and meet with two other friends that are like me so they don't tease me and we just talk guy talk and then I go home so the thing is to kind of show the the lack of partition participation in life and how much of those daily activities brushing your teeth showering food sleep care really go by the wayside unless they're reminded taking their medications they may have to be reminded or because they don't take medications they're ordered by the courts to get a shot once a week do they show up for that so think outside the box on this one again I would say um and again I I know we all want to praise our loved ones but this isn't the time to praise it's the time to look at the typical and the worst days in their lives because they want to see those bug buzzwords they want to see those symptoms.

SPEAKER_02 41:03

Remember you're trying to tell the truth and the truth varies from day to day but tell the truth and and get a determination of disability so that one can have money to live on.

SPEAKER_00 41:17

Thanks Randy yeah um number 12 in subsection C is also an important one to me because I well my experience is they really have very little self-consciousness of personal care which is number 12. So they talk about kind of basic things dress bathe care for hair shade feed self use the toilet I've highlighted other because you know OCD may come in the come into play where they wash their hands a million times and shower about five times a day but that's relevant too because it takes a lot of time out of your day right on the other hand it might be the other extreme where they never bathe they smell terrible quite frankly they look in the mirror and they don't realize their hair is greasy or it needs to be cut or they do brush their teeth but they don't do a good job. So they have five cavities a year. Again it's looking beyond the question and kind of restating it like I wonder what they're looking for here.

SPEAKER_03 42:19

Yep.

SPEAKER_00 42:20

So that's an important personal care to me is a big one I think in mental health issues that's not uncommon. Number 15 under that part C is getting around how often do you go outside you need to look at the language here too that has one sentence well I go outside every day but maybe for just five minutes because I get anxious when I go outside. Or to smoke a cigarette or pot or pot yeah or I go outside um every day and I walk about a block but then I come back home as soon as possible I can't I can't tolerate the colors the grass out there or the sounds I'm hearing it's a cacophony so the too many people is a big one with our exactly and it sounds like such an easy question. It's an easy question somebody who's typical whatever the hell typical is but you know what I mean so again think about what that means part C within that getting around question is when going out can you go out alone? Well I can you and for how long can you and can you go to the doctor by yourself? Can you go to the grocery store by yourself or do you start going down the candy aisle and that's all you buy or the potato chips so you know the applicant may say I can do those things but they're not healthy choices which is where the third party report comes in.

SPEAKER_02 43:50

To me the third the third party report looks exactly like this.

SPEAKER_00 43:54

Exactly yeah except it's in the third person. Right. How often does your You know, the African go outside, for example, or the disabled person go outside. To me, this is a hot topic, and I don't know how you all feel, but number 17 is money. I call it the allergy um quandary. So my example is this money gets in my son's accounts' hands, and he's allergic to it. It's got to get the hell out of his hands as fast as he can because otherwise he's gonna get a wrap. So we can, but he can't use it wisely. And it's and I apologize for saying hell all the time. I mean it's been a tough six months.

SPEAKER_02 44:41

Um we we understand, we totally understand, and some of us are going through it again.

SPEAKER_00 44:47

So um, I and one of the other things I would say is, and this is my experience not only personally, but in working with people with mental illnesses, there seems to be this lack of awareness that there's something beyond today. And so trying to use money wisely or save it for a rainy day is not really a palpable concept, I would say. So I think you'll and this is the same thing, there's so little space for you to answer anything, and certainly on that third-party report, you need to answer it. So, how can you help develop a stronger case with the adult function report? Either the applicant or in conjunction with you or whoever fills out that third-party report, be detailed in your explanations, use attachments, attachments, attachments, thoroughly probe limitations that you recognize get in the way of your loved ones socializing because impulsivity, smelling bad, anything, or quirkiness. I mean, it doesn't feel good to say our loved ones are weird, but it certainly is a reality. So sometimes you just have to suck it up and say this is painful for me, but I'm gonna put it. Be consistent with your statements and medical treatment. This one's a little bit dicey in that a lot of our loved ones will have schizophrenia and then those other subcategories, but they may not be directly treated for, let's say depression, right? So the doctor might write about it, but there may not be specific medication. You can say the main or the major diagnosed disability is schizophrenia, but my child also lives with depression that shows like this. And I do not find that to be inconsistent because schizophrenia is such a broad-based mental illness.

SPEAKER_02 46:51

Um again, I have a I have a question.

unknown 46:54

Of course.

SPEAKER_02 46:55

So as you're filling this out, and you know, we we here on the podcast have mentioned many times if you have someone in your life with a serious mental illness, keep as many records as you can. Hospitalizations, weird behaviors, up down, keep a notebook, uh keep a file on your computer, but details, details, details.

SPEAKER_00 47:21

Exactly.

SPEAKER_02 47:22

Where does substance abuse play into this?

SPEAKER_00 47:26

Do not ignore substance abuse, especially schizophrenia. Um Social Security Administration recognizes that it's a common self-medication for those with schizophrenia and schizoaffective. Be honest about it because if it shows up somewhere in the medical records, the one thing I would encourage you to do is to call the doctors that you have um mentioned, take care of your loved one, just to say, could you stick a sentence in there that says with or without use of illicit drugs or POTS legal in many states now, but with use of marijuana, they would still have schizophrenia and they would still have a disability. Because the common reaction from a uh DDS person is, oh, they do drugs. If they just didn't do drugs, they even hunke jury. So it's helpful to have that statement say, yeah, it's true, he does do drugs. It's very common in these types of mental illnesses, he'd still be sick even if he wasn't using them.

SPEAKER_02 48:29

I love that wording that is like worth its weight in gold, along with many other things you've said, with or without substances, he still shows the symptoms of schizophrenia. That's really vital. Thank you.

SPEAKER_01 48:43

Yeah, I really don't know. I have a question. But right, my son right now is doing really well. And um I look at their clients that fill lose its benefits. Do people have to only fill things out with their both FSPI? Or you know, if I don't have the authority up to a program constantly. But um, has anyone ever lost their SFPI because that's why um cannot work full time? That's too much for him that he's totally overwhelmed if he does. But it can work up to halftime and he does very well. But a lot of these functional things now that you're going through, um he can do.

SPEAKER_00 49:35

Okay. Yeah. So but he can only do it 20 hours a week. Do you see what I'm saying?

SPEAKER_02 49:45

So he can only do it if he's on his medication.

SPEAKER_00 49:48

Right, exactly. And when the stress gets heavier, everything else starts falling away.

SPEAKER_01 49:53

So he can only do it when he's sober and he has relapses. But I worry during those little windows of time, which now that he's on phlozepine, it's actually a longer window, that he will somehow um not pass these tests. Yeah.

SPEAKER_00 50:10

Well, this is what I would tell you. If in since all of this time, if you have never had a disability review for him, I think it's highly unlikely you will. Um, so they do disability reviews on occasion under a prior administration. They were doing it every year for the homeless, which knocked everybody out because we couldn't find them. Um, that is not the case right now. We're finding anywhere from four to eight years, but the older you are, the less likely you are to get a disability review. Um, and schizophrenia doesn't just go away. So I would think there's going to be less chance of that. The thing that may trigger a review is if he starts showing the ability to earn that $1470 a month for two or three months in a row, then it may trigger something. And if that's the case, come talk to me and we'll deal with it. Okay.

SPEAKER_01 51:10

At $13 an hour and usually works 10 to 15 hours a week, probably not gonna happen.

SPEAKER_00 51:16

Yeah, I would agree with you. So let's go here. So this is kind of a fun part, um, partly because I love getting resources. I think that's my my strength. Um, and I frequently do this at the end of the family-to-family uh program that we do with National Lines on Mental Illness. Because I can't guarantee you that anybody's gonna get SSI or SSDI benefits. And I think this helps people realize that regardless if they get it or not, there are other avenues to having some supports in place. So I'm gonna start with SOR, which as you all know, I love, love, love. It is a program that's through a federal program through the Substance Abuse and Mental Health Services Administration. I have given the website, but again, if you just Google SOAR, you will find the website. And they are an outreach access and recovery program. It's found in all states and the District of Columbia. And what it does is it increases access not only to social security disability benefits, but it also helps with homelessness, medical issues, co-occurring substance use disorder. And the goal of SOAR is first of all to have a tremendously huge success rate, which I believe I've been able to apply across the board because of the skills I've learned from them. And they are so well recognized by SSA in the states that seeing that a SOAR provider has actually filled out the paperwork benefits the person who's homeless or facing homelessness, which let's face it, every one of ours, if they spiral it down without us, are facing homelessness. And so they can get a relatively quick grant, but these programs frequently also have job programs involved, medical care, housing. It's kind of a wraparound service. I do want to say this one quick thing though. In Colorado, we used to have a SOAR program that I worked for that only did SOAR, only worked with the homeless. Then a funding kind of fell away and it blended with the um a different program. So they still exist, and I think the person who runs it could not be any more knowledgeable. It's with a cerebral policy program, but it still does work with mental illness. But what I want to say is there's a handful of people that are trained in SOAR that work for the mental health centers. They're okay. But I'm glad that you're listening to this because I think it gives you equal, if not more, information that you can encourage them to look at. It's overwhelming. It's just overwhelming for the providers. You know, they're probably getting third-party PTSD and it's exhausting.

SPEAKER_02 54:26

So this is you, this is a resource for everybody to be aware of. Uh storeworks.samsa m-hsa.gov, and I'll put some of these in the show notes as well. Great. Um, just so you know, we have about maybe 10 minutes left.

SPEAKER_00 54:44

Oh, I'm right there. We got to do that. All right, I'm not ready to be done.

SPEAKER_02 54:49

I'm not ready to be done either, but I just want to make sure I want to do it.

SPEAKER_00 54:53

Dinner would be good. Um, so I think this is a helpful program. And you may find in your state, in fact, that they'd be willing to review that third party report that you're filling out. Um, and I think some of them have really good tricks to accomplish that. So don't write them off, even if you're in the process already. So, work opportunities. I love, love, love this program. Another federal program. It's called Ability One. You can learn it about it at ability1.gov. We frequently call them an A1 program. The cool thing about this program, oh my god, it actually gives your loved one an opportunity to work. And it can either go below or above that 1470 a month, and it's really based on what their abilities and needs are, okay? This program started in the 1970s. There was finally recognition by Congress that people with significant disabilities or who are blind have a really tough time getting into the workplace or being able to sustain life. And so they started working on all these programs where there was an agreement with the feds that there would be federal employees who would accept workers with disabilities that are provided for and identified by nonprofit state programs. So 75% of the staff they guaranteed 75% of the annual hours of work will be devoted to those people with disabilities. Obviously, the federal government has a huge breadth of opportunity to have businesses and contracts and to be able to make that available to this group of people. So, what I would do, there's several of them in Colorado. I've got a favorite one, however, but um is look up ability1.gov and find out who the nonprofit program is in your state that does this. Now, for better or worse, I will tell you, and I only say that because I think expectations become a little bit skewed for our loved ones, but in Colorado, if you do get one of these jobs through this nonprofit program, you are paid a certain amount by the feds, and then in Colorado, I can't say it's across the board, they pay you $5 on top of it. So an hourly wage in Colorado, $21 an hour. Imagine the amount of hours for somebody who struggles being in that setting. You could work 10 hours or 15 hours a week, feel incredibly successful, get that $14.70 a month, and be proud of yourself. Wow. I always encourage people to make sure their loved ones are working because it's really good to be part of life. So I love this program. And I've just learned about in the last two years through a class I'm teaching to a Spanish-speaking program. So go for it.

SPEAKER_02 58:16

So it's ability O-N-E, just so uh if you're listening, it's not ability numeral one. I never even heard of this, so that's pretty either. Okay.

SPEAKER_00 58:26

Something like 45,000.

SPEAKER_01 58:28

I'm checking out Minnesota right now, and I did check out SOR, and we are one of those states that applies it only to people who are uh homeless, apparently.

SPEAKER_00 58:39

Is it homeless or facing homelessness?

SPEAKER_01 58:41

Because I think Yeah, homeless or facing homelessness.

SPEAKER_00 58:44

So I think that's a really broad description. Again, Mindy, I would say our children are one step away from at any moment being homeless. And they and my experience in working for SOAR in Colorado, we accepted that. The recognition that's one paying check away or one, you know, goofed up check through the government because they're going through some kind of problem with reconciliations, right? So don't write them off. It's still worth that phone call. And money, many of them, excuse me, many of them actually teach classes on it. So you can get a hands-on help with the applications.

SPEAKER_01 59:25

Good to know. Wow.

SPEAKER_00 59:27

So providing for our loved ones, I will do this really quickly. There's three that I just want to touch on. I'm not an expert, I would just tell you from my own personal experience. There's the ABLE program, ABLE, Full Trust and Trust Funds. So ABLE stands for Achieving a Better Life Experience Act. And um, it was passed in 2014, recognizing that our loved ones are encouraged to remain in poverty. And because they're limited in what type of funds they can get from people, you know, you could give somebody um grocery money and it will impact the amount of SSI they could receive. So ABLE comes along and allows somebody to have $100,000 in their account, can put in $15,000 a year, totaling $100,000. Anything over $100,000 does get counted against them for SSI. But up to $100,000, it doesn't matter if you help them with housing and food, which is one of those things that typically you have to rely on the governments, you know, $700 a month to cover. So ABLE accounts are wonderful. I think you will find them in all states. Um, it's definitely worthwhile looking around because different states have different ABLE accounts. You may like some better than others. And there are so many things. It was Down Syndrome Association. We're the first to come out with ABLE account explanations, but I the ARC, all of those programs are very involved in providing you some guidance. My intent with these slides is simply to give you names and uh words to give to your financial planner, your uh trust and estate person, just to see how they can help you making those decisions.

SPEAKER_02 1:01:26

So it's able nrc dot org. I've never heard of this either.

SPEAKER_01 1:01:36

I have to say we have finally hit upon one that the Grylings have used. And it was a beautiful program. And believe it or not, I found out about it because being on our local NAMI affiliate board, a man with schizophrenia and actually autism as well, brought it up to our board and we advocated for it with our county, and then all of us made sure our family members signed up. But it took a man with schizophrenia to educate us.

SPEAKER_00 1:02:08

Mindy, I would tell you that somebody who's on SSDI versus SSI, it's different in different states, but kind of the average is $300,000 for somebody on SSDI. That was that thing I said about early on that those who are on SSDI have a uh a greater grace to be able to get some programs available to them that are not available to SSI. So you might want to check in on that one. For SSI, it's a cap of 100,000. The Able accounts for SSDI can be higher.

SPEAKER_02 1:02:40

Wow. And I will add that uh we're aware that many people want to know about trusts while we're here and trusts after we're here. Um we're gonna find some expert. Maybe Danny, you can recommend someone to us at some point and do a whole show on trusts that are built. But this is a good start, and thank you so much for this. So you got you got um another slide here. Okay, two more resources. I love it.

SPEAKER_00 1:03:08

So these are called pooled trusts. Um, it's the website that I've used, but again, you can look up pooled trusts, P-O-O-L-E-D, as in everything's thrown into the same pool, um, to see what you have in your state. Like in Colorado, we have several programs that participate in that. We have one that's a full wrap-around system that I really like because they'll step into your shoes when we die. They will be the pay-e. If your loved one gets kicked out of an apartment, they'll help you find housing in addition to taking care of the trust that you've created. So a pool of trust really allows all the funds to go into one trust fund. And as a result, because there's a bigger number of people participating, a bigger pool of money, it costs less to administer it, which can be a real problem. Uh, the cost of using a banker, a private fiduciary can really take away out of sales for your loved one. I know we don't have that kind of money. So, um, and it also decreases the administrative fees, like some of them it'll be $120 to buy into the program, others will be $1,200. So it's worth looking at the types, these trusts are particularly good for families who have $250,000 or less. Again, because it can be very exorbitant to use a bank fiduciary or trustee or um a private program. And I think it's also a good program for those of us who don't want our other children to take this task on because I think it can ruin relationships. That's my personal opinion. You have to do what's best for you.

SPEAKER_02 1:04:51

No, I I think the one in Connecticut, I think we did an episode on it, Planned Lifetime Assistance Network or something, Plan P L A N sounds like I think it is the same.

SPEAKER_00 1:05:00

Yes, I think it is part of that gold program. Because I remember talking with you about that previously. So spendthrift trust or provisions, it's not really, it depends where you are, but let me explain to you the benefit. Um, in any trust that you get for your loved one, it is my understanding based on my own experience, not my legal expertise, that if the money goes directly to your loved one, it counts against against them for purposes of the benefits they receive. There has to be a trustee who distributes it somewhere. It cannot apply for their food and it cannot apply for their housing. It can be used for anything else medical, schooling, vacations, computer, bicycle, toenail clipping, anything. Okay. But these spent so the language is more important than whatever it would be titled. It can be a special need stress, it can just Be a trust, a spendthrift trust. This was critical for us again on that thing about money because our son cannot handle money. This is critical for us that there be a provision within our trust that says that the beneficiary, this the child or the individual with the disability does not have direct access to the money, they can't push it off to somebody that wants the money. This is the beauty of it, nor can the creditors touch it. So when your loved one screws up and enters into some kind of contract, they can't get blood from a turnip and they can't get it from the trust.

SPEAKER_02 1:06:40

So this is a spendthrift trust.

SPEAKER_00 1:06:43

Yeah, or a spendthrift provision. And again, it doesn't have that exact like it doesn't have to have that exact language, but for an attorney to understand what your goal is, that creditors can't access it and your loved one can't directly access it, is how you deal with that.

SPEAKER_02 1:07:00

Wow. I think we just did have an expert on trust. I think it's you.

SPEAKER_00 1:07:05

And that's the end.

SPEAKER_01 1:07:07

That is so huge because so often people um like our sons are victimized. And if someone knows they have money, um, it's soon gone.

SPEAKER_00 1:07:17

Yes. And I think it's also important if they get into relationships and you do need to talk to your state attorney about this. Trust um I hear a dog whining back there. Um, trusts are um treated differently if there's like a divorce or something. So do make sure that they're protected from uh a partner that may try and claim part of the trust. But that would be a state decision.

SPEAKER_02 1:07:50

This this has been amazing. My mind is just blown by by all this, and you know, uh Danny is my cousin. I just figured I'd throw that in. I'm so I'm so proud of you. We were once little girls together when we were able to get together.

SPEAKER_01 1:08:07

Two talented real relatives, that's for sure. Well, thank you. And I have pages of notes, you can see.

SPEAKER_00 1:08:15

And you know you can always send me questions. And anybody who's listening to this podcast or sees it, feel free to send it through to the um three moms, and I will answer the best I can on the things I feel qualified to answer.

SPEAKER_02 1:08:31

Okay, so if you want to reach Danny, reach her through me, randy at randyk.com. And Danny, if anybody wants a copy of the slides, could I send that along to them?

unknown 1:08:41

Absolutely.

SPEAKER_02 1:08:42

Danny, this has been amazing and so educational. We ran a little over our hour, but I think it was worth it. No, I think it was worth every minute. Every minute, every minute. And we all need to be educated, and you are the best. Thank you so, so much. My pleasure. Thanks you guys for letting me thanks for joining us for this episode of Schizophrenia. Three moms in the trenches with Randy Kay, Mindy Gryling, and Miriam Feldman. To get in touch with us or to learn more about our books, please visit our websites at Miriamfeldman.com, MindyGryling.com, or randyk.com.