Help! I Don’t Understand SSI/SSDI - Ep 50, guest: Dani Page, JD

SZ 3 moms Ep 50: Help! I Don’t Understand SSI/SSDI

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 ask:
Clarification:
Dani would like to clarify something from the podcast in which I participated. The maximum a disability attorney or non-attorney advocate can charge is 25% of an applicant's backpay, up to a maximum of $6,000.

SSI/SSDI/SSA - please explain the differences!

Who makes the disability determination? (DDS)

What are the myths about SSI? Will my loved one have to stop working?

How to apply - steps

Do I need an attorney?

What is SOAR? Can they help? How much does it cost?

What materials/records do I need to gather/create?

And more

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

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SPEAKER_01 0:00

If you have ever tried to get SSI or SSDI for your loved one, and it's not been as easy as you thought, then this episode is for you. Welcome to our podcast, Schizophrenia. Three moms in the trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feltman, Mindy Gryling, and Randy Kaye. This is episode 50. And when I put it on our Facebook group to ask people if they had any questions about social security or social security disability, I can't even tell you how many comments there were. And we're going to do our best to answer them today. But welcome to episode 50 called Help. I don't understand social security. And our guest today is Danny Page, who I have to do full disclosure is my first cousin. And I love her and she's awesome. And I don't like her enough because she lives in Colorado. But anyway, um, we do have some childhood memories together and grandparents in common, which is awesome. Danny is um she's certified in SOAR, which is SSI, SSDI outreach, access and recovery. And that's for individuals with behavioral health challenges who are homeless or at risk. She's also a presenter and facilitator on implicit bias in the space of disability, certified family-to-family facilitator, as am I, and um and a retired attorney. Is that fair to say?

SPEAKER_03 1:34

That's fair.

SPEAKER_01 1:35

That's fair. So welcome. I'm so, so excited that you're here. Um, Danny, I'm just gonna leave your camera on for a second and we're we're going to get two minutes to just tell you who we are. So if there's any listeners here who don't know who we are, I know you know me, but briefly, I have a son who I call Ben for publicity purposes. He is currently for the second time on uh Social Security. He had a space in between where he was doing so well that he was taken off Social Security. And as a result, he has actually a better monthly now because he was able to work in between. But I will have to say that I agree with somebody in my family, the family class, who said, you may as well quit your job if you have to apply for social security for a loved one, because the paperwork will take you hours and hours and hours. And it was like writing a term paper. I feel like it was the thesis to get everything together. Uh, getting him reinstated was another very long journey. We finally did it, but it took much, much longer, even on the fast track. So that's a bit about me. My son Ben is 40. He has schizophrenia. Uh Mindy, you want to go next?

SPEAKER_02 2:50

Sure. Jim is uh 44. I am in Minnesota Danny, and I wrote Fix What You Can Schizophrenia and a lawmaker's fight for her son. Um, Jim started out working full-time after he was diagnosed, and he was at a program where they were doing things like janitorial work and um yard work and things that were low stress, and he was able to work full-time. But as time wore on, they had less hours for him, and then he had to uh go on SSDI when he was 28. And we knew it was hard, so we just plain hired a Danny. We hired an attorney. And um she just told me, I think I've said on this program before, you don't come because they're gonna ask, can he ever work again? And you're gonna say yes. And so we can't have you in the courtroom. And then she worked with Jim and we got it on the first try. She was such an experienced attorney that whenever she walked in, a judge you know, gave up and gave permission because they knew she had done all her homework and she wouldn't be there otherwise. But everyone can uh uh afford an attorney. But I have to say, the last thing we didn't have to pay her a dime. She took the first two months of Jim's uh check and he wasn't getting one anyway, so that was really no hardship. And so I hope it I hope to find out that it's that way in every state, Danny, when you we give you a chance to talk.

SPEAKER_01 4:14

Thank you. And Mimi. So you're muted.

SPEAKER_00 4:21

Hi, I'm Mimi Miriam Feldman. Um I have a son, Nick, who's 36 and he has schizophrenia, and my book is called He Came In With It. And you know, I was very lucky with SSDI because I was advised by a friend who's a social worker very early on to do this. And my husband and I had a lot of misgivings about it because back then it was so hard to accept um the diagnosis and also the idea of being on the goal was just something you know, we had this feeling, well, we take care of our own. Well, thank God this friend of mine um uh enlightened me about it. And so we did it, and um it wasn't that hard. I mean, this was 15 plus years ago in Los Angeles, and there were a lot of hoops to go through and a lot of papers to fill out, and it all came down to going to some designated doctor at um some horrible clinic in downtown LA who saw Nick for 15 minutes and then okayed it. And since then, you know, it comes up for review, but um it seems pretty rote so far. I guess I should not on wood.

SPEAKER_01 5:43

Okay, thank you. And Danny, I'm gonna give you a second to introduce yourself. And uh, I've I've said some of your qualifications, but we don't know your family stories. So if you would tell us a bit of that, and then I if you're watching this on YouTube, Danny's gonna share a screen and she's got a whole presentation. If you're listening as an audio podcast, it'll be self-explanatory as well. And in this presentation, she's gonna, I gave all the questions to her. You were following the Facebook group, so she's gonna try to answer as many of them as possible, and uh then we'll see what comes up. So go ahead, Danny.

SPEAKER_03 6:15

So, as pertains to my family, um, first of all, I want to tell you I was licensed as an attorney since 1984, and fortuitously I worked in the disability arena and have worked in that area to the present day. Fast forward a few years, my son um comes home to me and we learned that he had many cognitive challenges. And at some point he was diagnosed with Tourette syndrome. The ticking piece hasn't really remained tremendously. He's 32 now, but the OCD, low cognitive function, executive dysfunction, a lot of the things I know many of your families parallel are definitely um in his current um daily activities. I did get him on SSI when he was 18, but I will tell you it was a terrible experience with SSA. They turned it down, they said he was too young, he hadn't proven yet that he was a problematic person who wouldn't be able to work or make some kind of living, which is common, quite frankly, the younger, the harder it is to get the uh grant through SSA.

SPEAKER_01 7:29

SSA is Social Security Administration, yes, okay, um, versus going through a judge.

SPEAKER_03 7:35

And I'll explain that process a little bit, but through a judge, he ultimately got it. One of the questions on Facebook is what do you do when your kiddo won't even acknowledge they have a disability? That's my son. So when we get to court, he says to the judge, Well, everybody thinks there's something wrong with me and that I'm weird, but I'm perfectly normal. And the judge really appreciated and respected that because then he had all the other information in front of him. And he said, I'm gonna give this kid a shot. And so he went on to SSI. He was on it for about eight years, and I will tell you at this end, um, I hated working with Social Security Administration. So we opted to go off for a while without saying that he had recovered from his disability. We just went off it. It looks like we may be heading back toward though there in the next year. That's the end of that. What I'm gonna do is put up my PowerPoint for those of you who aren't seeing it. For those of you who do see it, I'm gonna whip through it because some of it's kind of important, some of it's really not. And I think my goal here is it's basically a primer. There's no way to get into the weeds with you because there's so many differences with individual circumstances. I would tell you that in general, if you live with schizophrenia or schizoaffective, there seems to be a kinder, gentler SSA out there in considering the applications. So take that and feel after spending two days of hell just thinking about the worst things about your family member or your loved one, that it's worth it because somebody will understand what your loved one is going through. So I just want to put that there up front because I think there is somewhat an easier path with schizophrenia. So let me try and get into my PowerPoint, which may take me a moment.

SPEAKER_02 9:33

Okay, while you're doing that, I'm just gonna say, yay, there's something better about schizophrenia.

SPEAKER_03 9:38

That's I know, right? Isn't that sad? It's like, oh good, my my kiddo has something good going for him or her. Yeah. So this is really again a primer on the basics of supplementing supplementary security income, which is called SSI and Social Security Disability Insurance. Oh, it doesn't want to go down. Um let me try this one. There we go. This to me is like the most important slide. For this reason only, am I going to read this slide to those who are listening? There's some really um mistaken beliefs out there about applying for disability benefits. You have to have an attorney to apply. Mindy, I appreciate that was a positive for you. I don't think it is, and I'll tell you why in the present day. You have to apply three times before you get approved. Nah nah nah. It takes two to three years to get approved. I'd say no. There is some delay because of COVID. They're not doing as many in-person interviews. It has slowed the process up. It differs from state to state, which I'll explain. There's a belief that you have to quit your job when you apply for disability benefits. Not true. There's also a misbelief that you can't work or you will lose your benefits once they're granted. Again, not accurate. And in fact, in the SOAR program, we always encourage people to try and do a little bit of work because it's it's good for their heart, their soul, their value, and it gives them a little bit of extra spending money when you only, if you receive SSI, only gain $841 a month. You know, that little bit of extra money is quite welcomed. So I'm going to do a general overview again of SSI and SSDI. People confuse SSI, SSDI, Medicare, and Medicaid frequently. So let me explain SSI again is supplemental security income, and it's considered a welfare program. The SSDI is because you've paid money into the system, much like an insurance policy. If you have a car accident after you've already paid in for your insurance, you expect you will get money back. So this is the reason I cannot go into the weeds with you. Social Security Administration is a federal agency, but the strange thing is this Social Security Administration reviews only the financial eligibility in any claim that is filed with them regarding disabilities. They don't look at the medical piece. That, bizarrely to me, I can't explain it, but goes to what is called disability determination services. That program is actually a state program funded by the feds. But because it is a state program, outcomes across the country are different, which should never be the case in a federal program, right? You'd think if it's a national-wide program, there should be equity across state lines. That is not the case. Wow.

SPEAKER_01 12:55

This clears up for me so much. So SSDI is Social Security disability income, which is different from what I'm going to get when I retire, which is correct. But that's but the determination as to whether or not you have a disability is a state agency. Is that what you're saying?

SPEAKER_03 13:14

Yes, a state agency that's paid by the feds. And I know this is going to be taped and I may get in a lot of trouble, but I'm going to say this in most states, the people who are at the DDS, the Disability Determination Services Program, are not trained in medical issues. They might have a doctor available if they think they need to talk to somebody, but our loved ones' cases are reviewed by a lay person. And that is the reason, Mindy, I'm going to guess that you were very fortunate in your circumstance, it may be the state. But that's why I don't think attorneys are valuable at the first level. When you start speaking legalese, it's falling on lay people and they're pissed that a lawyer thinks they know more than they do. So I always try to tell people to try and be as basic as you can, but be as thorough as you can. And we'll go through that. If your case is denied, 190% of the time you have to have an attorney appeal the case to get it before an administrative law judge. You cannot do it on your own. Please don't even try. I don't care if you hire a divorce attorney. It's better than having no attorney with you.

SPEAKER_01 14:32

But that's only if you're turned down and you're appealing.

SPEAKER_03 14:35

Correct.

unknown 14:36

Okay.

SPEAKER_03 14:37

So just a quickie on this supplemental security income, again, is for a low-income person, somebody who's blind, somebody with a disability. It's needs-based. So what that means is it's the largest welfare program in the United States. That is what SSI is. SSDI is for people who have paid, whether it's years or just short amounts of time, they have paid money into the system through FICA, typically through an employer, or if you're self-employed, you pay that yourself. And so it sits away in an account in case you ever need it, because you yourself become disabled, your loved one becomes disabled. The way you can figure out whether you qualify for any SSDI is very simple. And please excuse me, I can't believe I'm saying this. I really like the website for SSA.gov now. I think it was terrible during the prior administration. You could get no information. It's improved tremendously. There's some empathetic people sitting there. SSA.gov is your friend for doing any kind of research or questions you might have. So go to that website and you'll see a little box that says, create my SSA account. If you do that, you can look at it regardless if you have a disability parents. You should be doing it to find out what you would qualify for when you do retire, have an idea of how much you'd make at 62, 66, and whatever months, or 70. It's so it's a nice guideline and for your loved one as well. There are similarities because you are dealing with Social Security Administration. There are similarities in applying for SSI and SSDI. The application process is the same, the definition of disability is the same. The ability to work, which they call substantial gainful activity, is the same. If you can make $1,350 or more a month, then you are not considered to qualify financially. I can explain that a little bit more when I finish. There is health insurance tied to a grant. For those with SSI, it is, I believe, every state in this country grants Medicaid with an SSI grant. When you receive SSDI, you may qualify for Medicaid, but within two years of the onset of your disease or disability, you will qualify for Medicare. One family member had asked, I don't want my kid on Medicare because they are covered by my insurance as an adult child with or son or daughter with a disability. I'd have two comments on that. That $170 a month, you should probably call your state, Medicaid and Medicare office to see if they will pay for it. Sometimes they do. My son also received Medicare because of a disability I have. And we were able to get that waived because my insurance as a federal employee to this day is fabulous. I'm just going to stick this in here now. If you have a loved one with a disability that is under the age of 26, go get a job at the federal government for five years. Because our insurance is the best thing you can ever imagine. It carries into my son forever and ever and ever. Even when I die, he's eligible for my federal insurance plan, which is better than any Medicare or Medicaid program.

SPEAKER_01 18:32

So that's an and so I'm just yeah, because I think what a lot of people are confused about, and I love that you're already answering questions from the Facebook thread. So what confused me so much was SSI, SSDI, SSA, S that made me crazy. So just so I make sure I understand it. So when my son first got it, he had not worked very very long. He had done some work, he had had seven jobs in one year and lost them all after two to three weeks because he decided he was better than everybody. And but he had paid something into the system. And at the time, he was eligible for about $700 a month. And then he got SSI, which I understood as supplementing his SSDI, and that came from the state. So he eventually got Medicare through Social Security and he got Medicaid because he was getting SSI. So, you know, now he put in some years of working full-time and he gets enough from Social Security SSDI itself to not need supplemental. But so that's where, you know, there comes a time if you make a little money, then they make you pay premiums and it gets very confusing. So for those of us, it's too late to get a federal job. Someone whose child is is, and I don't want to get too much in specifics because I know you have a lot of general to cover, but since you started answering the question, so this woman whose kid is is covered as a disabled adult under her, she should still look into Medicaid Medicare for her loved one because or for someone to help pay those premiums.

SPEAKER_03 20:10

Is that so yeah? So what I would suggest from what I understood from her post or her question was that her son does receive her insurance as an adult child with a disability, but Medicare kicked in. So I'm going to assume that he was receiving SSDI, where Medicare does kick in.

unknown 20:30

Okay.

SPEAKER_03 20:30

Medicare takes priority over private insurance. So I suspect what's happening is there are many doctors who won't take young people on Medicare. Stinks, not right, but they do it. So her private insurance or his private insurance should kick in, but I would check with my my insurer on that one. But the um she can go to the, it is confusing. It's a federal program, Medicaid is from the state, Medicare is federal, but she could still go to the state and say, my son receives Medicare because he receives federal disability benefits. Does our state program pay for his premium because of his low income? So then at least he wouldn't have to pay the premium. The other question would be: she could go to Medicare.gov and chat with them and say, I want to waive his right to Medicare. I don't want him to be on Medicare. And that is a possibility, too, if she gets the right person chatting on the other end. If not, I'd recommend sending an email to a federal rep or congressperson, just say, Can you intervene on this? My son doesn't need the benefit of Medicare, at least not at this time.

SPEAKER_01 21:50

Okay, thank you. All right, so I'm gonna let you continue. While we're stopping, Mindy or Mimi, do you have any questions so far?

SPEAKER_02 21:57

Yeah, I just wanted to underscore what Danny just said. Which I think, which I'm always harping on wherever I go, but I think a lot of people forget, and it's very important to always contact your elected officials at whatever level you are dealing with, because they have wonderful constituent services. Yes. I had it when I was a legislator to deal with state issues, the Congress people do, and so do the county commissioners, where the rubber meets the road with the mental health system. And sometimes people think, well, I'm going to be intimidated if I get that congressional person or something. Of course, they never answer their mail. They have staff to do that, and they're wonderful staff. So everyone should heed what you just said. If you have trouble with these things, contact your congressperson.

SPEAKER_03 22:44

And honestly, the people that sit in the offices, Mindy, I suspect this was your experience because you were the hiring authority, but the patience is tremendous. And I've seen them explain things I couldn't figure out on my own. So it is a great place to seek some help.

SPEAKER_01 23:03

Okay.

SPEAKER_03 23:05

All right. We'll forge forward. I'm going to give you a really quick abbreviated summary for the criteria for eligibility for both programs because it is the same. Okay. So the thing I want to emphasize over and over again, it's not just having a disability, it's a disability plus the inability to engage in substantial gainful activity, which means you have to be able to earn $13.50 or more a month in 2022. It changes every year. I think it went up about $40 this year. So it's that whole piece of don't tell people they shouldn't be working. It's okay if they work four hours a week and make $100. What how wonderful is that for their self-respect, their dignity, getting out in life. So don't ever discourage that. And it frustrates me to no end when people tell you quit your job. Um medically.

SPEAKER_01 24:07

So I think um I'm not sure if you misspoke, but what you're saying is that in order to qualify, you have to be unable to engage in substantial gainful activity. And they define that as earning less than 1350 a month. Thank you, still you can still be working a little bit and still qualify. Exactly. Thank you. Yeah, perfect.

SPEAKER_03 24:32

Um, medically determinable physical or mental impairment, uh, you know, with schizophrenia, schizoaffective, the conditions can be diagnosed by a doctor. So again, the benefit to having a family member with schizophrenia or schizoaffective is you more likely than not have dealt with doctors or hospitals because of a 72-hour hold or psychosis or something to that effect. Duration was a question that came up too. And so what I want to say is don't panic over the duration issue. Um, the impairment has to have lasted a year or is expected to last a year in the future, or mixture those two. Let's say your child had a psychotic break and was hospitalized for two months, is back home, has been diagnosed with schizophrenia, and the psychiatrist is willing to write in his um psychiatric summary this young person has been diagnosed with schizophrenia. The diagnosis happened um in April of 2022. It's expected to last for the rest of his life to the next 10 months. Um, that it is it is an ongoing disability. It's not something that, as Randy might say, you can't give them um chicken soup and it goes away, right? So the duration piece doesn't really make me nervous, except to say, just because your loved one has only experienced it for two months, don't let that shy you away from pursuing this. Functional information, I think, is this thing you and I see every day with our family member, which is oh my God, he can't even figure out how to brush his teeth, brush his hair, take a shower, not smell bad, get to bed, get up. Those are functional things. It's the things that you and I do on a daily basis without thinking about it. And that's one of the reasons our role in this is so important. Because our loved ones to them, the way they live is normal for them, right? It's typical, but it's not what the greater community sees as typical. So, in essence, we become the comparator for our child. So when our family member, our loved one is running into these problems and they have to fill out paperwork about what they can and can't do, don't help them. Let them do it for Social Security Administration, because there's a form we can fill out that tells the real truth from the point of view of somebody who lives in the typical world.

SPEAKER_01 27:19

So that uh that brings up something for me that a lot of people were asking as well. Now, when I initially applied for Ben, he said, I don't want disability insurance, I'm not disabled, I don't want it. And the only reason that I believe I was able to do that for him is because I became his conservator. So a lot of people were saying, Well, what if they don't want to get SSDI? Can I apply for them? So are you saying that your loved one can fill out a form about what they can and can't do, and you can fill out your own version of it and submit both?

SPEAKER_03 28:02

That's absolutely correct. And he doesn't really even have to submit it as if you because Randy, I know in your circumstance you had medical evidence. So even though he didn't feel like he's disabled, you had that evidence to establish it. The piece that gets really difficult is when the family member doesn't even want to go see a doctor. Then so, and I will talk about that. But I um so yes, you can do it in filling out the form, they will ask you relatively currently in the last 10 years, they will ask you, are you filling it out yourself or someone filling it out for you? And you can say, I am a family member, or I'm the doctor, or I'm the social worker filling it out for this individual because part of his disability is the inability to recognize that he has a disability. And so that is one of his disabling conditions.

SPEAKER_01 28:58

Great.

SPEAKER_03 28:58

Um, I'm gonna show you this again. This is one of the things you go to SSA.gov. That's a pretty decent, uh decent list. So it's called the checklist for online adult disability application. They just kind of give you a checklist of things you might want to have nearby as you go through the application process. It gives you a heads up so you don't go in there and fumble all around in a panic. This to me is my most favorite part about um Social Security Administration. So I have here social security.gov that you can just put in SSA.gov, pull it up, search for blue book. So in law, the blue book for us explains to attorneys how we're supposed to cite to things, how we're supposed to refer to articles. The blue book for Social Security Administration is the book that tells disability determination services what they're supposed to look at in assessing somebody's claim. So let's say you got through that part where you know that you're financially going to qualify, and then Social Security Administration passes it off to their state counterpart, and disability determination services has it in front of them. This is why I love this book. So this is what's called the listing of impairments under the disability um uh blue book. And when I know for those of you who are not looking at, but when you pull it up under SSA.gov, you will see the area you are interested in is chapter 12 called mental disorders. Then when you pull that up on the left-hand side, you'll see like notes that um actually break down mental disorders into more um specific areas. For schizophrenia and other psychotic disorders, it's 12.03. So, this is why I want to tell you about this. I'm not going to read through it. They explain to you what the end of what the um examiner looks at. I learned this a long time as an attorney working for the government. I worked for Legal Aid before that and had to deal with the government. Whenever you can spit back the language they've given you, you put them in a more comfortable zone. Every time you can cite to a piece of language they provide you, I'm telling you, it's like a shoehorn, it's helpful. So, just for example, they want medical documentation of one or more of the following delusions and hallucinations. When you're writing about the different functional issues your loved one has, you are going to, if it applies, use delusions, hallucinations, disorganized thinking, which we might call word salad, but highlight it too. It's almost like a test. Every time you cite to something they have put in their own document, you get a point, a check mark.

SPEAKER_02 32:12

You know BS really well.

SPEAKER_03 32:15

Yes, I do.

unknown 32:16

I do.

SPEAKER_03 32:17

And I really am all about highlighting and making it easier for the government employee, right? Because they are overwhelmed. And the truth of the matter is they do get some fraudulent claims, as is true in any benefit program. There are those who try to cheat. Unfortunately, they brush us all with this broad stroke, and assume we're all trying to cheat. So you just have to bring them back in to a place they're comfortable by using language they're comfortable with.

SPEAKER_02 32:43

Could I just ask really quickly? There's a, you know, many people in the mental health movement that would like schizophrenia not to be a mental disorder as much as a neurological disorder. I noticed that was one of the categories. Where is where are things like um autism or dementia over there?

SPEAKER_03 33:01

Autism is also in mental disorder. Interesting. Yeah, I know. We're not getting very far on this. To me, they're all medical issues, right? Our neurological system, our brain, all of that, and cognitive is also mental health disorder. Um, and I really don't know what the the current events, how this will change any of this. I'm hoping it makes people more anxious so they're more accepting of the stigma they've created to allow our family members to get the treatment that they should be getting. I don't know where it's gonna go, Mindy. I'd I'd be curious to know what you um hear from your inside sources at some point. So I'm gonna move on. There is another part to my slide that gives you some more of those buzzwords that I really want you to go after. Um, but I think again, if you can have your psychiatrist explain that the disease is serious and persistent, it doesn't just go away. I think that's really valuable language. And at some point, I think it might be valuable if you're dealing with psychiatrists that aren't really familiar, perhaps, with this area, that we come up with some kind of um form that they can use in filling it out so they can use some of those buzzwords that are beneficial, and of course, assuming it's accurate. So again, I think in discussing how this disorder affects them, it's not just that they have schizophrenia or schizoaffective, but affects them in their inability to work. So our daily act, our daily living activities organ, are those things that we take for granted, being able to go to the bathroom, brush our teeth, clean our hair, shower, not be disheveled, um, be polite to people, not yell, not look down, ignore. So those are things that are really important. Um, the social functioning piece, difficulties in maintaining concentration, the ability to follow through with instructions, as well as episodes of decompensation. So, for example, Randy, I know your son was feeling like he might be too good for his job, so he'd quit. My son might be told you really shouldn't be using your cell phone so much. And he'd go, Oh, you fired me, and he walked out the door. So, right, those are episodes to me of decompensation and failure for social comprehension.

SPEAKER_01 35:35

So, again, this is a case of like the more we are educated, the more we can help our loved ones and to see it. You know, for me, it's it it it it's new to me to remember the difference between social security agency and the and the state agency that determines if there's a disability. So check it out, use the language, speak to them in their language so that these poor government employees can, you know, tick off the boxes. That's really, really helpful information. Okay.

SPEAKER_03 36:07

And make a really quick decision, is our goal, right?

SPEAKER_01 36:10

Right.

SPEAKER_03 36:10

Yeah. So developing a stronger case, I've um again documentation that addresses, I called it listing criteria on my slide, but against that blue book listing for 12.03. So highlight those areas and make sure there's somebody, in addition to you, because you get to use that language too, but that your psychiatrist or treating physician can deal with. Good medical treatment is considered specialist psychiatrists in this event versus general doctors or nurses, but longer treatment is more valuable than one examination. If your loved one is experiencing homelessness, it may very well be that they don't have any medical information available to them. In that situation, disability determination services is supposed to set them up with a qualified psychiatrist that can make the assessment, state to state. I would just say in Colorado, I don't like who they send them to. That's all I'm gonna say. Yeah.

SPEAKER_01 37:15

So um, but I we're here representing like four or five different states. And so, but that's part of the beauty of the podcast. But we have spoken in the past about this, and all of us um keep records, keep records, keep records, keep records, every medication they were on, what the symptoms you saw. Uh, and and you know, obviously we're talking as parents, but you know, for spouses and siblings and and children of, if you're an adult children of someone, just note the hospital stays, note the doctors that treated them, the more you don't have to dig up that information when it comes time to fill out the forms. Uh the I won't say easy, but the easier it will be. Mimi, did you keep a lot of records when you were complying?

SPEAKER_00 38:07

Um, you know, again, I and the more I learn about this, the more I realize how incredibly lucky I was because it all just happened very quickly when he was like 20. And um no, I didn't.

SPEAKER_03 38:25

I mean, I keep med I keep records for medical, but um they didn't ask for a lot, it was just this one doctor's that's really nice to hear, and again, I think that this type of diagnosis is going to be recognized um more seriously, and um yes, so I think that's a surprise me.

SPEAKER_00 38:54

On the day that we took Nick to this doctor in downtown LA, we luckily he was uh floridly psychology. So it was like textbook, I want to say crazy, but I know I upset people. Textbook schizophrenia. I mean, it was like out of a movie. So I mean, when he walked out the hall, uh my husband was waiting for him, the doctor actually gave my husband a thumbs up.

SPEAKER_03 39:23

Oh wow. Well, Mimi, the other thing I tell you is California is one of those states that's known for granting higher than other states. Um, so I'm hope, and there's also movement going on, and I'm hoping it'll move quicker, that allows somebody who's been diagnosed with schizophrenia, whether they're homeless or facing homelessness, to be given a preliminary grant for six months so that the um disability determination services examiner can actually start pulling the case together to encourage a grant. And they're having something like a 93% success with those grants. And there's three different cities, I believe, in California there are doing that pilot project. So there is some movement, it's horribly slow and it's never quick enough, right? Because it's just difficult. Um, the other thing is be sure to mention again those functional limitations. Yeah, he can make peanut butter and jelly, but by George by God, if he has to pull back the cellophane in a microwaved food, it ain't gonna happen. It's either gonna blow up or still be frozen. Um, be consistent and credible. I swear they try to trick us. You will get what's called the adult function report, and they will ask the same question in three different ways to see if they can trip you up. Don't let them trip you up. Be consistent and credible. I don't even care if you say, Well, I already responded to this, but in case you didn't read it, here I am again. Um, so if you're at if you are missing any type of medical treatment, maybe you want to get it before you start putting your case together. Use detailed explanations and attachments. They give you about this much room. I'm I'm gonna say my hands are showing four lines for you to put the different things that impact your loved one. You're not just gonna write schizophrenia, you're gonna write everything that falls under that. Insomnia, noncompliant medication, depression, um, impulsivity, executive dysfunction. Again, highlight those names and put it on an attachment because there's not enough room. Our stories are much bigger than what they think it is. The struggles are much bigger than what they think it is. So never shy away. Highlight areas if that particular examiner likes depression things, they'll go, ah, depression, I get it. Okay. Um, be consistent, uh thoroughly probe your limitations, your loved ones' limitations, be consistent with your statements, and use that blue book for guidance on what the buzzword should be. I always recommend people apply online. I will explain this. SSA.gov, you can go to disability application, click into it. It's really intended only for SSDI, that is the person who has paid money into the system and are looking for insurance. Regardless, fill it out online for two reasons. It helps you pull everything together. It allows you to take a break when you just feel like all you want to do is sit down, have a pity party, go have your pity party. Come back when you're ready. Be sure not to lose what they call the re-entry code. Take a snapshot of it, print it out. You lose it, you start all over again. Sometimes it's hidden and not easy to see. So every time you move to the next page, be sure to look for it.

SPEAKER_01 42:57

Do you save as you go or does it automatically? You can save as you go. Yeah. Okay, but you there's a re-entry code if you have to leave and prior on it. Exactly. Okay, great.

SPEAKER_03 43:07

Um, and print receipts, print copies of your application, every single thing that you submit, whether it's by computer or sending it off to disability determination services. And this is just the reality of being swamped, right? 100% they're gonna lose your documents. So you've got to have copies. If it gets caught up in somebody else's file, it never made it to that particular examiner. It's not because they're bad people, it's just the reality of having way too heavy caseloads. So after you have done that, you'll it will say you've completed your SSDI application. Would you also like to apply for SSI? Everybody should do that. Randy, I think you said that. Yeah. Um, Ben did get some SSDI, but not enough. So it can be supplemented. You can get both SSDI and SSI.

SPEAKER_01 44:00

Right. And that's how he was able to pay uh to room and board at the group home. Oh, perfect. And I made them pay so they would go with him to the bank and they would take their rent out and then give him spending money at the time.

SPEAKER_03 44:14

That's perfect. And it takes it off your shoulders, which we really need at times, in my opinion. So with the SSI, you either have to go in person or do the interview by phone. I can't answer that question for you. My son is a gorgeous man. He presents very well. I thought it would be a disaster for him to go in person. So we did it by telephone, which is harder for him because he can't see the mouth. And that was beneficial. That's something you'll have to decide and see how you feel about it. So what's next? Once you finish filing just the initial application, which is going to be adjudicated solely on the financial piece, whether you qualify financially, it's going to be sent over to DDS, Developmental Determination, Disability Determination Services. They are going to pepper you with paperwork and you're going to be ready for it. So I would look up SSA.gov, the adult function report. There's one for the person applying. There's one for anybody else that wants to participate in it. Just kind of start going through it again, realize several questions look the same because they are. And make sure you answer them similarly. And they're going to ask questions about work history. It's fine if they had a good work history. And then all of a sudden there's this precipitous downfall, whether it was because of a psychotic break or medication change, whatever. But it shows that it's been failed work history. And so, in the kind of that's what you're looking for. I recommend that people start putting together a daily journal of what they are observing of their loved one. Like last night, couldn't go to bed until three in the morning, so didn't get up until two in the afternoon, and then was so discobobulated, just sat in bed for the next two hours. Again, what you're showing is what their reality is versus what our reality is. If you need a doctor appointment, get a doctor appointment. If you need to gather medical records, school records, employment records, do. I will tell you that technically, um, DDS is supposed to pull all that documentation for the family member, as long as you're able to identify the hospital they're hospitalized at, um, a group practice where they see their doctor, psychiatric practice, they're supposed to pull all that. I just like knowing they have some control over this. Takeaways. Again, it's not just that you have a disability, but the disability prevents you from being able to participate in substantial gainful activity, which is determined to be $13.50 a month. Apply online, even if you know that your family member is not going to qualify for SSDI. It's just an easier path. Keep copies of absolutely everything. Do not allow them to limit the space that you write what you have to write. You can always use attachments on the form itself. Be organized and consistent in what you write and what you present. Those are the end of my slides. And I know you're really short on time. So I'll let you tell me what you'd like.

SPEAKER_02 47:44

Before Randy does that, I just have to say, Danny, yeah. All of this, I am glad we went straight to an attorney who did all this for us. Yeah, I understand that. My question then is is it in every state like it is in Minnesota that the attorney is paid for by the first two months of no.

SPEAKER_03 48:04

So um I would tell you that in our state, an attorney is not paid if they do the filing with Social Security Administration, it's granted. There are no fees. They have to appeal the case to be able to get fees. And it's codified. So um the family member will not pay a penny, nothing comes out of their check, any back pay or anything, none of it. So there's almost an incentive to not win, to get an initial an initial grant. And so that is my only hesitation. But based on that, I really would love all of you, all of you, to contact your SOAR providers in your state, because they every state have a SOAR provider. All 50 states have a SOAR provider.

SPEAKER_01 48:58

Okay, so that's SSI, SSDI, that's the S. The O is outreach, the A is Access, and R is recovery.

SPEAKER_03 49:05

Right. So let me give you a website, okay? It's SOAR, S O A R Works dot SAM. Um, yeah, Substance Abuse and Mental Health Services Administration. So um S-A-M-H-S-A dot gov. So guess S-O-A-R W-O-R-K-A-S dot S-A-M-H-S-A dot gov. If you go there, they will show you who your contact is in the state you're in. They also offer online trainings for us as lay people, um, so that you can go through and learn the very specifics about what you need. And I I know that in the state of Colorado, the man who does ours, Byron Kish, actually will do some specifically geared toward mental health issues, which I think is different than physical. Um I don't think they use kid gloves with our loved ones versus people who are have physical visible disabilities, right? I would say blindness or or something. Exactly. So I love, I love SOAR. I they started out doing their programs to work with those who are homeless or facing homelessness, which I think we can say about every single one of our loved ones. If we weren't in the middle of it, they'd be homeless. So I truthfully believe you'll qualify for services and help through your SOAR program.

SPEAKER_01 50:45

There are so SOAR charge? Is that a fee-based no charge?

SPEAKER_03 50:50

There's no charge at all. It's all supported through grants and other programs. Wow. Many of the mental health centers in states will have somebody who's SOAR trained. I think they're so overwhelmed though, they're not as good as the SOAR program itself. So if you can find a SOAR program itself that um does um disability benefits, I'd head there first.

SPEAKER_01 51:15

Okay. Well, it is um that's such great information. I just have a couple of questions reflective of what a lot of people were asking on Facebook and also for myself, like uh on the SSA site or on the SOR site, is there information as to how much money they're allowed to have in a bank account? Like my son is all budgeted, but now he just started a part-time job and it's not going to be above 1300 a month, but he's got a ticket to work now, so that for the first nine months he can he can try, but right, he doesn't want to lose his his disability again. Right. And everything go so slowly that last time when he worked his way up to full-time work, he lost his social security, but nobody told him, and suddenly they sent us a bill for $30,000. So, you know, that was a whole thing. But so we're okay, we're square now. I said we're happy to pay you back at the rate of $20 a month, and then they stop bothering me. But anyway, I don't know. I I know other families with children with Down syndrome who weren't so lucky. So I want to talk with you about your specific case later. Um, they're so they're so backed up that yeah, sometimes it takes them a while to get the information to you. But my question is um, so my son wants to use this money to save for a car. Is he allowed to have money in the bank to save for a used car and not lose his socials? A lot of people ask that on the Facebook. Can he have money in the bank? Is there an okay?

SPEAKER_03 52:45

So now I've got to get to my cheat sheet, but there um for SSDI, that is not an issue for SSDI. The bank account isn't an issue for SSDI, it's the income. And again, it's because he has insurance versus having to show that he's indigent.

SPEAKER_01 53:06

Gotcha. Okay. Okay, so that's helpful. Our level asking, can they have property under their name? So for SSDI, which is a which is uh financially, you can qualify financially, but it's the disability determination services that decide if you're disciplined. Right, okay. That's correct.

SPEAKER_02 53:27

Um, before we go to another question, back to that first one. You can have money.

SPEAKER_01 53:31

Just so you know, we have about five minutes left. This will be an hour-long podcast, but worth everyone going on.

SPEAKER_02 53:38

So you can SSDI in money in the bank, it's just the 1300 that you have to consider, but don't you lose your MA if you have more than 2,000 if you don't have an ABLE account? Tell me what an MA is.

SPEAKER_03 53:50

I'm sorry. Medical assistance, it's uh Medicaid. Well, Medicaid probably will be impacted. That's correct. But if you're on SSDI, you should qualify for Medicare.

SPEAKER_02 54:03

Well, in in Minnesota, anyway, we call Medicaid medical assistance, but you can only have 2,000. But there is the that is correct.

SPEAKER_03 54:12

100,000, right? Yes. So yeah, and let me hit that real. So let me tell you that for Medicaid or whatever it's called, that would be backup, right? So Medicare for SSDI is still primary, Medicaid is secondary, so you don't have out-of-pocket costs, and that is still based on um indigency, which a lot of our loved ones would be indigent, right? So um, but if he's making more than that or has more in his account, um, there was a question about whether or not the amount of money that you can have to qualify is is is going to go up from $2,000. There is bipartisan discussion that that amount in the bank of assets can be $10,000. Um it's Congress, it's it's the government. It didn't discussion. So don't hold your breath. Yeah, don't hold your breath, is what I would say. Um, there was a question about my loved one isn't getting their full benefit amount, the whole $841 because I feed them and I give them a home. I'm gonna tell you how to resolve that issue. When you go into this, you say, Yes, my loved one lives with me. Yes, I provide food and I provide housing. As soon as they get benefits, they will be paying me, reimbursing me $20 a month, as you've said, Randy, or some kind of agreement. It does not have to be any more than a third of $841. That's why people are seeing the reduction of $569 or whatever it is, because they're taking a third of it for food and housing. You can say no, nobody ever checks to see how money is moved.

SPEAKER_01 55:58

So charge, charge your loved one for boom and board, but even if you don't take it, charge them and tell them.

SPEAKER_03 56:04

And you can show the movement, you know, from his account to your account. That's what we used to do. He used to be. And Mindy, you're not gonna hear this, okay? Because you know, your government. If your loved one just happens to find a gift card sitting around somewhere, I mean, just because I get my son a subway card for $10, it doesn't mean that he's gonna lose that on his SSI income. Um, I guess what I want to say is be creative. Can you read between the lines here? Yes, yes, yes. Okay, thank you.

unknown 56:41

Yeah.

SPEAKER_03 56:42

Um, and by the way, it's only housing and food. You want to send your family member on a vacation? No problem. You want to so it's just bizarre. It's that's bizarre. Yeah. Um, I think I I was just gonna check to see if there was anything. Is there anything recognized I missed?

SPEAKER_01 57:04

You covered so much there, you know, and and plus you gave us resources to go for answers between SOAR and the newly friendly SSA website that we can find answers there. I I have a feeling, Danny, that this is uh we're gonna get a lot of response to this, and maybe we'll bring you back in a couple of months for more specific questions, like part two, if that would be okay. My pleasure. Um I I I can't tell you. Look, I've been dealing with this for 20 years. I feel better because you told me stuff I didn't know. So that was, I mean, I learned something. Did you guys learn anything?

SPEAKER_02 57:43

This is the this is the program of all the 50 we've done so far where I have learned the most. Oh, thank you. I have learned the most. And luckily we we have SSDI in our house already, but I have so many people we all do that ask us questions. So you have armed me with more information than I've gotten from.

SPEAKER_03 58:02

I know I'm happy to hear that. Um, Randy, just so you maybe put on your list, I would encourage you to talk about pooled trust funds. I I think ours is called Colorado um people, um, CFPD, Colorado Fund for People with Disabilities. Oh, I guess special needs trust. But it's a pooled trust. So people who don't have a lot of money and can't afford the cost of having it um done for your loved one, it's like $40 a month if you do with uh a pooled trust. And I know all states have them.

SPEAKER_02 58:39

I will I think we should have a program just on trust. I think I do too. Another topic, and people need to know about that. And I we have, but I have never heard of pooled trust. So there's another need to look.

SPEAKER_01 58:52

I love them. I love them. Definitely going to. If you if you know anybody at Danny who'd be willing to be on the show to explain it to us, that would be awesome because we're lining up our lining up our September. We we are going to have um Judge Leifman on the show. Oh, fantastic. He said yes, and uh, we have a lot coming up. It's uh this is episode 50. We're gonna take a few weeks off and start up again. Well, we do about two a month, and uh, but you know, we if we miss each other, we may do another episode. You never know, but we have a lot lined up for you. Um Danny Page, I can't thank you enough. It's this was so pleasure. Um, any last words before we start? I just want to say I can tell Danny's related to Randy. Oh, yeah. Her dad is my mom's, was my mom's older brother. And then they moved to Colorado because her dad had asthma, right? Yeah. So we were we were denied each other's everyday company. But still, I love you.

SPEAKER_03 1:00:01

It's been a pleasure, everyone. Thank you so much. Thank you. Thank you.

SPEAKER_00 1:00:06

Thank you.

SPEAKER_01 1:00:08

Hey, thanks for joining us for this episode of Schizophrenia Three Moms in the Trenches with Randy K, 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.