Episode 13: How to Successfully Apply for SSI or SSDI with Dena Gassner

Applying for SSI or SSDI is a daunting process that’s anything but transparent. The system is set up for you to fail, and as a result a lot of people eventually just give up.

Today, we sit down with social work expert Dena Gassner, who presents her proven system for successfully applying for SSI/SSDI – without getting a lawyer. She educates us on the seven criteria Social Security is looking for (but won’t actually tell you about) and how to cross reference medical reports with your personal narrative.

She also lets us in on the fact that Social Security will be thrilled to give you an extra budget for financial literacy purposes, and how to itemize living expenses so you can qualify for your max benefit. We also learn more about how to get Medicaid to pay for Medicare premiums when you’re on SSI/SSDI.

You won’t want to miss this episode of Mom Autism Money!


Learn more about CalABLE

Check out these educational videos from today’s episode sponsor, CalABLE. You can learn more about CalABLE here.

You’ll also want to be sure to check out their full suite of educational videos and webinars on their YouTube Channel.

Show Notes

Dena’s Center for Understanding FB page.
Find your local chapter of The ARC.
Find your local chapter of The Autism Society.
Find your local chapter of United Cerebral Palsy.
Contact Dr. Connie Anderson to check audit availability for Dena’s class at Townson.
Like Mom Autism Money on Facebook.

Full Episode Transcript

Brynne: Hi, everyone. Welcome to Mom Autism Money. We are very excited to bring you today’s episode. Joyce, how did you feel about today’s episode?

Joyce: One of my favorites. And I keep saying that all the time, but I learned so much from Dena and I hope you guys do, too, because she is amazing. And has some tips that you are going to need if you are going to be applying for SSI or SSDI.

Brynne: Oh my gosh, me, too. I am so, so psyched to talk to Dena. Now, we actually talked to Dena about two different topics. We talked to her about SSI, SSDI, and applying for that as hard. Like most people get denied multiple times. Sometimes you have to get a lawyer involved.

It’s not a transparent process, but yeah. Dena gives us some really great tips and this like explicit system on how to address it. Now next week, we’re going to talk to her again about vocational rehabilitation and we have some great information on that, too. But today it’s just SSI/SSDI.

Dena Gassner is an adjunct faculty member at Towson university, and she’s also a PhD candidate at Adelphi University.

She was recently appointed to the Interagency Autism Coordinating Committee, which is a body that reviews current autism research and uses that to advise the president’s cabinet on the priorities for autism funding. She is also the co-chair of the autistic research committee for the international society of autism research and a national board member for the Arc US.

She coordinated the INSAR, which is that international society for autism research, INSAR opening for special interest groups, which is a three-year research project beginning with building on the strengths of autistic scholars by addressing systemic barriers to autistic success in academia. She is extensively networked and published and has provided training events to the United Nations in Russia, England, Copenhagen, and some other places, too.

So we are just so honored and excited that we got to sit down with Dena. And we’re really excited to introduce you guys to this system that Dena has developed for applying for SSI.

Also, before we get started, we wanted to say thank you to today’s sponsor, CalABLE. That’s California’s ABLE program. You can use these accounts to shelter your savings from SSI and other means tested programs.

So you guys are going to hear a couple of ads from them throughout the episode today, and we hope you will check them out.

All right, guys, let’s get started.

(whooshing sound)

Brynne: Thank you so much for joining us today, Dena. And before we get started, I’m wondering if you could tell us a little bit about yourself and also your experience with some of these services that we’re going to be talking about today.

Dena: I am a 63 year old PhD candidate writing a dissertation, uh, frankly, on social security access. So that’s kind of funny. What I find is that with a lot of these systems, it isn’t the person’s limitations or challenges that is inhibiting them accessing them, but something the literature calls “administrative burden,” which is just intentional red tape.

And it’s sort of like there’s a hidden curriculum to this that nobody tells anyone about. So when I’m working with families on accessing social security or voc rehab, when I tell them about the hidden curriculum, I find that they get really anxious and very overwhelmed and frustrated.

And I try to get them beyond that to: It is what it is, and let’s just work within the system’s framework. So that’s the approach I take. I’m on the national board of directors for the Arc US. I think I’m in my last year of my tenure with them. And I’m heavily involved in autism research, uh, nationally and internationally, as well as doing a lot of policy work for the Interagency Autism Coordinating Committee or the IACC.

Um, this is my first year in that appointment. And what we do is advise the white house on where funding for research monies through the NIH and the CDC should go. So I wear a lot of hats. Um, but all of this started because I had a kiddo that was diagnosed with autism at three. They misdiagnosed him with intellectual disability.

So I tell people my career’s been developmental. So as he would pass through different thresholds for services and supports, I’d develop a new area of expertise. So now he’s in his thirties and my expertise area focuses primarily on adult needs. I was very surprised, but not necessarily disappointed to get my own autism diagnosis at 40.

And so my son and I experienced very different journeys. He was, he never knew a day where autism wasn’t part of his language. Where understanding himself through the lens of this language wasn’t available to him. He never knew a day we’re getting supports was unacceptable. He never had a day where injustice that he faced was ever internalized as his doing.

Obviously at 40, I had a very, very different experience. So my focus right now is primarily on individuals like myself, for whom there was no diagnostic label for what we experienced. Or worst case scenario the labels we were assigned came with ensuing medical maltreatment and malservice because it was incorrect or partial.

Right? So for example, many autistic women who were not identified because the, you know, the nuances of autism were not understood, experienced misdiagnoses or partial diagnoses of like mental health issues. You know what autistic doesn’t experience anxiety, for example? If all you get is a diagnosis of an anxiety disorder, the underlying developmental issues will never be addressed.

I’m in that kind of cohort of individuals who are, you know, having to unpack social conditioning about how we experience the world and trying to reintegrate our identities to incorporate our Autism.

That’s me in a nutshell. In terms of systems, my son and I have endured multiple systems in multiple states.

He was massively underserved in our state of origin. And when my daughter left for college, my son and I relocated first to North Carolina, and then to Nashville near Nashville, Tennessee, to try to get him in a school system that understood that his problem was less about autism and more about global processing differences, learning disabilities in every academic domain.

But once we provided the intensity of support that he genuinely needed, we were able to clearly see that he was very capable and he went on to graduate from Marshall University, graduated from high school with an honors diploma, but it required intensive, intensive supports for him to achieve those goals.

Interestingly enough, you know, he’s, he’s doing very well, but we navigated Voc Rehab out of Tennessee, voc rehab out of West Virginia. And now we’re back negotiating VR through Kentucky. And the systems are going through a massive, uh, struggle with, with COVID. We’re really struggling to maintain services for these agencies and to get adequate support across the board for people with IDD.

Brynne: Absolutely. And for everyone who is listening, if we haven’t, I’m not sure if I introduced you guys to this term yet. It’s something that I know, especially if you’re a parent of a younger child, you may not have heard of this state resource before, but every state has their own vocational rehabilitation office.

And they might call that office by a slightly different name in your state. But when we’re talking about voc rehab, that’s the programming that we’re talking about. And before we get into that, a little bit, I want to talk about SSI. What kind of circumstances or situation a lot of people who find themselves applying for SSI, find themselves in? Like what prompts that initial application for a lot of people?

Dena: Well, generally there’s two groups of people that wind up applying. The first is a group of individuals who are transitioning into adulthood, whether that’d be 18 or 19 years old. They have a lot of intensive parental support in accessing that transition, into getting that funding. And then there’s…and so my son was in that grouping. And then there’s individuals who frankly have spent an entire lifetime experiencing autism, but never having adequate supports and services.

And so it’s actually a result of repeated microtrauma, if you will, of being under supported, that leads to a state that Rainmaker and others call autistic burnout. And it’s a state you get into when none of your sometimes limited cognitive resources are available for even the most basic help-seeking. It’s just a state of shutdown.

And these, these episodic experiences with burnout often come after periods of being overwhelmed with too many demands in the workplace. It could be a relational breakdown. It could be a massive, uh, lack of support at a point of transition. So for example, someone returning to college late in life, and these are usually people who are getting late diagnoses.

And so they, the reasons why these people go are, are obviously different, right? One is doing it because it seems like the next natural step and the other is doing it out of a state of complete shutdown. There is another group of people who should be using social security. And that’s the people who don’t think they need it, or they have this myth in their head that if they get social security for their young person, It means that they will never continue to aspire or that it’s the last resort.

Or the biggest myth whatsoever, it’s well, maybe it’s not a myth, but it’s the truth that, because people don’t know how to use the system and how to navigate the system it’s perceived as unbearably difficult to secure and too complicated. So people don’t try. So hopefully after today, we’ll make it a little more accessible for people.

And they’ll get a little braver because for us, I mean, social security paid for my son’s housing and paid for his meal plan in college. I just don’t think enough people consider using social security as the next natural step to post-secondary supports.

Brynne: And with SSI, from what I understand, it is very basic.

I think max benefits, if you’re getting like that maximum number you’re allowed, it’s somewhere between $700 and $900 a month, last time I checked? I don’t know if there’s been a boost with  inflation or not.

Dena: Yeah. Let me backpedal and say there is another pocket of social security funding for young children who have disability.

Wherein the household income is fairly low, but this is not what I’m prepared to talk about today. So I just want people to know that that’s not what we’re about today because that’s not my area of expertise, but it is available if the household income is low enough. It really is a program that presents the application process as a transparent, simplistic approach.

But it’s not what it appears to be. It’s a little bit misleading in some ways. And I will say, too, that it’s a hard switch for parents who have spent 12 years of public school, and for many adults, trying to prove their capacities and their worthiness, right? Trying to demonstrate relative strengths.

And for the purposes of social security, we have to flip that upside down. It can’t be focusing or emphasizing strengths. We’re going to have to focus exclusively on functional limitations. A lot of people also think that diagnosis is what’s relevant. So they send in all of this evidence of being diagnosed, which is relevant.

But the judge isn’t going to really examine that evidence very thoroughly to look for evidence of functional limitations. So that’s where my strategy comes in, is closing that gap and making sure we’ve more meaningfully articulated the nature of a day in the life of someone.

And another thing parents struggle with is realizing it’s a day in the life if the primary supportive person isn’t available. And so it can be really kind of, uh, grief triggering for many people when they have to like frankly and transparently look at how much more room for growth there is. But I have to keep reiterating to people. It’s just a process we have to execute. It’s not a destination.

It’s not where things are going to stay. It’s just this process we have to execute to get where you need to be.

Brynne: And with that, I’m wondering if there are any tips for kind of handling…I mean, obviously we want to learn about ways to handle the legal paperwork burden. But also that emotional burden that comes with kind of having to bring up all of these things that, you know, they’re not the things that you necessarily define yourself by, but the government makes us prove, I guess they focus on the negative parts throughout this process. So I’m wondering if you have any tips for that emotional process, too.

Dena: It’s a very medical model process, right? You know, many IEPs are very medical model. It’s exclusively based on deficits. There’s nothing in IEPs, largely that says, “Johnny is really, really good at this. So let’s give him more opportunities to grow that strength.” Right?

And so parents have, you know, again, been at that IEP table saying Johnny’s really, really good at this. Can we give him two music classes instead of one? And trying to demonstrate that they’re worthy of the amount of staff time and energy and so on, that needs to be, you know, in our case, my son didn’t have any externalizing behaviors.

And they wanted to reserve one-on-one support for students who have more behavioral concerns. Well, my son’s needs were academic, not behavioral. And it was a real battle to get past a prior misdiagnosis of ID, intellectual disability, to prove that he was able to get a diploma and for them to be able to justify the staff that he needed to do so.

You know. And so to go from that mindset to my, my child is unable to and looking at all of the things, first of all, that are expected for adulthood. And secondly, all the things the school didn’t provide. Are students who are high verbal language scattered, but relatively high intellectual capacity, but maybe with poor social skills, poor executive function, difficulties with processing, difficulties with self-regulation.

Those individuals are thrust into the academic coursework and they don’t ever get any training whatsoever for more mundane activities of daily living. They just don’t get taught how to make change or how to order new medications or how to cook because we’re spending everything they have trying to get them through the academics.

Right? And so these are the people often that have even worse adaptive behavioral skills. These are the everyday things we do in terms of self-care and initiating tasks and maintaining our homes and all of those kinds of things.

(chime sound)

Nondescript voice: And now, a word from our sponsor.

Brynne: CalABLE is helping thousands of Californians living with disabilities achieve a better quality of life. CalABLE is an excellent tool to help us all strive toward financial equity.

Today, we are honored to introduce you to the CalABLE account holders and parents of accountholders that truly embody this program’s mission.

These ambassadors are realizing the world of possibilities that are now available with a CalABLE account.

The 2022 CalABLE ambassadors are:

● Dominika Bednarska

● Stephen Bell

● Valerie Crisci

● Ryan Hoag

● Ashley Mannheim

● Jennifer Obakhume

● Brenda Pascual

● Héctor Manuel Ramírez

● Patty Wong

CalABLE can help you achieve your dreams both big and small, and one of the best ways to learn about CalABLE is to hear directly from people who are already benefitting from their accounts.

In the coming weeks the California state treasury will be sharing videos featuring each of their 2022 Ambassadors and we can’t wait for you to hear their stories. You can find the ambassador stories by subscribing to CalABLE’s YouTube channel, where you’ll also find webinars about topics important to families like ours, such as:

·       Maximizing your year-end ABLE account contributions.

·       How CalABLE accounts work with Special Needs Trusts.

·       And how CalABLE works with programs like SSI and HUD.

Get ready to be inspired. And perhaps, you’ll consider opening a CalABLE account for yourself or a loved one.

Learn more by subscribing to the CalABLE channel on Youtube. That’s C-A-L-A-B-L-E on Youtube.

(chime sounds)

Dena: That is actually what we’re going to, we’re going to start with. So let me just kind of talk about what social security needs to give you an affirmative response. So social security has specific areas of limitation that they need to see evidence of. And that evidence can be presented in two ways. One is obviously these diagnostic tools.

So an ADOS or The Brief is a very good measure of executive function. Something like the Vineland is really good at looking at everyday functional skills. But what we find is that the social security administrators and the judges struggled to dig into those evaluations to find that evidence. And it’s not organized in the way that a judge would use it.

So that creates an incredible barrier for people trying to get social security. Okay. The second area, uh, or mechanism that you can demonstrate need is with something called a personal narrative. So it’s basically a narrative reporting of a day in the life of this individual. But again, if you just write your personal story, the judge is not going to dig through all of that to organize it in their system.

So what I’m going to teach you now is what the system asks so that you can respond within their framework. So effectively social security uses primarily seven areas of limitation that they examine. And I adapt that a little bit to consider the population and I can even customize it a bit for individual needs.

Okay. So for example, one of their areas of limitation is mobility. And again, where parents go to and often autistic adults using the system is mobility is walking. So since I don’t use a walker or a cane or a wheelchair, I don’t have a mobility issue. But according to the social security framework, it can also include the psychological ability to navigate to places in the community.

Also within your own home. Also within other environments, like say a closed campus at a university. So for example, I had a client who went to college every day, parked in the exact same designated parking space every day. And every day she went to campus, it was as if she had never been there before. So that would be a mobility impairment.

Being unable to use Uber is a mobility impairment. You can also add into this category things like I live in a rural area. So there’s difficulty securing any kind of ride share services or public transportation, right? That’s not the person’s limitation, it’s an environmental one, but it could certainly be added into here as a factor.

And it’s often important to remember that all of these are focused on employment. So it isn’t even enough to say this person has trouble remembering how to navigate physical environments. It has to have the so, what? So as a result is often missing in the psychological reports, right? And in also the psychological reports, don’t specify for employment.

So it needs to report in the narrative: When I go to my college to try to attend classes it’s as if I’ve never been there before. As a result, I’m frequently late for class and I’m judged by my professors as not being focused. Even if I get there an hour early, I could still be late for class. So that’s the snapshot that social security needs to see.

Right? If a person has a relative strength, like they do have a driver’s license, it may need to quantify that they can’t drive at night. They don’t drive on the interstate and they don’t drive in bad weather. So you can see how even a relative strength has been quantified or reduced such as they still see a limitation.

And the so what to that would be, so the individual is going to either need to advocate in the workplace for a colleague to pick them up in those conditions. Or they will never be able to work at night? right. Or they never be able to work somewhere where they can only access it through the interstate.

That’s just one category. And those are some of the examples. I had a client who did have autism and an intellectual disability. And she had never ridden on public transportation. And her parents had now navigated her into living in her own condo in the city in Nashville. And when she would ride the bus, she would forget to get off because on the bus she wasn’t facing forward anymore.

She was facing the interior of the bus. So they had to do an entirely new set of training for her to teach her how to look at the sides. Or at the front, through all of the other seats to see when to get off the bus or how to advocate with the driver to say, I need to get off at such and so, right? So you can see that, you know, there’s a lot of ways mobility challenges can manifest in this population.

It’s very individual, but I would start with the heading mobility in the narrative report. Use these labels as an outline, if you will. Does that make sense?

Brynne: No, that is super smart. Thank you. Thank you for that. What are the other ones?

Dena: Yeah. Yeah. So I just wanted to go deep on that one because it’s one that’s often misunderstood.

The next category is communication. So for the autism community, you know, we, we talk about communication. We talk about expressive, or how we communicate verbally, or in writing, how we express ourselves. Receptive, which is how we receive information verbally or in writing. And then the third area is pragmatics.

So for social security under communication, I have that heading. And then under that, I break it into expressive and receptive language. Hold on to pragmatics. We’ll come back to that. So this would be any kind of learning differences, processing differences, being verbal, having language collapse under pressure or under anxiety, having social misinterpretations.

Although that would probably go to pragmatics. We’ll talk about that more, but like, this is a person who has a learning disability with their autism and they can’t write things out. Can’t participate meaningfully in receiving directions for the job requirements and so on. Okay. Pragmatics actually goes under social security’s category of interpersonal skills.

So this is the social aspects of communication, and it’s also relational. Being able to have a good relationship in the workplace. And although social security says it can include family relationships, we still need to apply this to employment. So this would be not being able to utilize a filter to ascertain what is considered appropriate workplace behavior or communication versus what we do in the public forum.

Like when we go in for a girl’s night out, we’re not who we are at a job interview. So autistic people may struggle at transitioning in and out of these different environments. Um, this person may have a work history…I describe mine as looking like Swiss cheese for many years, right? Because I was actually trying to secure a job instead of a job that was adapted to my neuro-diversity.

And so I kept having repeated terminations or I would quit the jobs because I would get burned out because it didn’t incorporate tasks that I was hardwired to be able to do more effortlessly. It can also include trouble with transitions, like say a boss is working with you in the supermarket, and they’re asking you to go from stocking shelves to bagging groceries, or they’re asking you to change a schedule like that can be experienced by an autistic person as illogical or overwhelming, or, you know, you may just like not be able to stop talking about a special interest in the workplace.

And that could be annoying. So those are more of the pragmatic pieces. So now we have mobility, pragmatics as embedded in interpersonal skills and expressive and receptive skills are buried under their category of communication. The fourth one is self-direction. This is basically executive function.

Being able to independently, and that word’s very important, very important. This is that, that tier right, being able to demonstrate these skillsets for 40 hours a week with no support. That’s the measure. So I had a family come in and say that they had checked a box that said that their their loved one…the question is misleading.

It says, can the person shower independently? What it really is asking is do they? And as you can imagine, you might get two different responses with that slight change in interpretation. So for example, do they shower with a pattern of behavior that’s comparable and necessary to what other people have to do to go to work?

Right? So if they don’t exhibit those self care capacities, then that would be something we need to report. Being able to plan your day, being able to initiate a problem-solving scenario and ask for help. Being able to call a friend and go out for a round of basketball. Like this is where that kind of information goes.

And self care is more of those actual tasks. You know, self-direction is the cognitive organization of skills and self care is executing them. So eating, drinking, grooming, caring for one’s money and managing that, managing medications, like the things you need to live from day to day. And then the last category is work tolerance.

And this is where that, that autistic burnout factor could be measured. Right? So it’s the ability to sustain the physical cognitive or psychosocial, emotional demands of a job. And remember, we’re again, looking at 40 hours a week full-time employment, right? So if people take these seven categories, I also sometimes add trauma as a category or I’ll add medication challenges.

You know, many autistic people have medication imbalances or intolerances. And can’t say for example, manage trauma in terms of dealing with anxiety and using SSRIs. Anything like that. If they lost a parent during COVID God forbid, you know, you would want to address a big T trauma like that. But if parents will use these categories as an outline, and then even more specifically find the evidence of those things in those psychologicals and add that into the narratives.

So John has tremendous difficulty initiating the tasks required to begin and sustain his day. Then you give a couple of examples of that. And then you could say, uh, parentheses report by Gassner page four, paragraph three. That’s very, very detailed. That’s what I do as a social work professional is cross-reference everything.

But I don’t want to not offer that to families because a lot of people have the capacity to do that, right? And so then what you would be doing is putting the day in the life and merging it with that document. Now, if I were the queen of everything, we would be teaching these psychological evaluators how to report for transition services.

Right? You wouldn’t need that in-between. But there’s sort of a template out there that we don’t seem to be able to break through. And that’s what we go end up with. So the heavy burden, again comes on to the families or the individual. Now the catch 22 is if you’re a 40 year old, who’s late diagnosed with autism who is coming to social security because of a state of burnout.

Basically, we’re talking about you having to be non-disabled to show that you’re disabled to get the services, you know, so again, if I were the queen of everything, we would actually create employment for people. That we would call system navigators and they would actually help the person execute the process.

So that’s what I do on the side. When I’m not dissertating currently, I’m not taking any clients. But I mean, this is something that a lot of families could facilitate if they just knew this hidden curriculum.

Brynne: Yeah, that is incredible. And I am on your team about that. We could really use some system navigators because this is, it’s a process that they’re looking for very specific things, but as the individual or as the parent, you don’t have any idea, like you’re, it’s just like throwing spaghetti at a wall and hoping something will stick. So it’s so helpful to know this background process. Thank you so much.

I know that some people do have trouble getting that first application through, and then there are appeals involved and filling out additional paperwork.

I’m wondering at what point should people, if they don’t have access to a system navigator and they feel really stuck and like, they don’t know what they’re doing. I know sometimes people end up getting lawyers involved and that really helps their case. Um, is there a certain point where you think people should start thinking about that? Or?

Dena: Well, people should assume, particularly when there’s no co-occurring evidence of, a very measurable condition. So people with COVID are fighting this right now, right? Long haulers, people whose autism doesn’t externally express itself struggle more than say someone like my son, who is in the moderate range of functioning and his disability actually does manifest.

But people should expect to be denied, if there’s, if they don’t have something, say for example, Ehlers Danlos syndrome, which is a genetic disorder involving hypermobility, which can be measured and evaluated in a very medical model framework. Or if they have a co-occurring heart condition, like when people with down syndrome often experience those kinds of complications, they should expect to be denied.

I would say, 90% of my cases on first trial get denied. And I have a theory about that. After two years, you become not eligible for Medicaid, but Medicare. And so I think part of it is an intentional delay process just to see if you’ll wait out the two year period, frankly. But I tell people, you know, again, my people who do this narrative, they have a tendency to be approved by the second appeal.

So when you get denied, you definitely want to immediately ask for the appeal and then you wait until you get a little closer to the day that everything is due. And so like a month out, you reach out to all of your providers and ask for an update. And the update should be just a one-page document that says status quo, nothing has changed, or they’ve had a regression or they’ve had modest improvement, but still insufficient for employment.

And you resubmit those one page documents that basically say it’s been six months since you’ve seen us and nothing has gotten better. I often encourage people to wait until after they have an ALJ hearing. So you’re going to get one denial. You appeal on paper, then you’ll probably get denied again.

Maybe, maybe not. And then you go ahead and appeal again, and that next appeal puts you in front of a hearing officer. And for many people in that scenario, their anxiety becomes so overwhelming that the disability is more tangible. In other words, they’re actually meeting you and they’re seeing evidence of limitation in person.

I encourage people to at least go that far. Before they, they bring an attorney in. Because the attorney is going to get a chunk of your money. Yes, it’s capped. Yes, they can’t take more than what’s reasonable, but it’s still your money that they’re taking. And the other thing is the system I’m explaining to you, they don’t know about. They don’t execute this.

So the only value the attorney has is demonstrating that you can’t do this by yourself, which is evidence of disability in itself. I really have had tremendous success regardless of IQ level, regardless of prior employment, regardless of education, when people use this system.

Brynne: Awesome. Awesome.

(chime sound)

Nondescript voice: And now, a word from our sponsor.

Brynne: Dreaming of saving for your financial goals without losing access to SSI and other means-tested programs?

Dreams can come true, and you can make it happen with California’s ABLE account: CalABLE. After you’ve opened your ABLE account at calable.ca.gov, follow these three simple steps.

First, ask yourself, what would it take to change your life for the better? Make a list of what you are saving for and estimate the costs for each item on your list to set your savings goals.

Then, share your goals with family and friends and see how you can all contribute to your account. Keep your loved ones up to date as contributions come in.

Finally, stick with your plan, learn more as you go, and celebrate all the wins along the way!

Let’s dream, plan and succeed together. Get started today by opening your ABLE account at calable.ca.gov or calling 833-CAL-ABLE. That 833-225-2253 or 833-CAL-ABLE.

Consider the investment objectives, risks, charges and expenses before investing in the California 529A Qualified ABLE Program. Please call toll-free 833- CAL-ABLE for a Disclosure Statement containing this and other information. Read it carefully.

Before investing in any ABLE program, you should consider whether your home state provides its taxpayers with favorable state tax or other benefits that are only available through investment in the home state’s ABLE program. You also should consult your financial, tax, or other adviser to learn more about how state- based benefits (or any limitations) would apply to your specific circumstances.

You also may wish to directly contact your home state’s ABLE program, or any other ABLE program, to learn more about those plans’ features, benefits and limitations. State-based benefits should be one of many appropriately weighted factors to be considered when making an investment decision. The CalABLE Program is offered by the State of California.

TIAA-CREF Tuition Financing, Inc. program manager. TIAA-CREF Individual & Institutional Services, LLC, Member FINRA, distributor and underwriter. None of the State of California, its agencies, TFI or TCS nor any of their applicable affiliates insures accounts or guarantees the principal deposited therein or any investment returns on any account or investment option, and you may lose the principal amount invested. The FDIC Insured Portfolio is FDIC-insured up to $250,000, subject to certain restrictions. Interests in the CalABLE Program are not registered with or in any way approved by the Securities and Exchange Commission or by any state securities commission.

If funds aren’t used for qualified expenses, the earnings portion of a non-qualified withdrawal is subject to federal income tax, possibly including the additional federal tax.

Non-qualified withdrawals may also be subject to state and/or local income tax. For those beneficiaries subject to California income tax, the earnings portion of a nonqualified withdrawal is subject to California income tax and the additional California tax. This CalABLE informational program was brought to you by the State of California’s CalABLE Board. Any statements or opinions contained within are those of the State of California. Your experience may differ based on a variety of factors, including your own state-of-residence, your needs-based benefits, tax and financial circumstances.

(chime sound)

Brynne:  That kind of answers my next question: A lot of times when you’re going through this process, like your resource thin. So how do you even afford that lawyer? And it sounds like if you have enough patience and wherewithal and know the system well enough, you might not need one. You just have to be willing to appeal through the process, keep jumping through their hoops.

Dena: Right. Again, it’s so important for people. You know, autistic people and often their families seem to share this social justice hot button where, you know, the, the shoulda coulda wouldas get in the way of just moving through the process. Well, they should be clearer about what they want. You know, they shouldn’t make it so difficult.

This shouldn’t be so hard and that’s just wasted cognitive energy. Right? When you go into this process, you just say, you know what? It is, what it is. We’re going to jump through the hoops. And then we might get through to the other side. I do want to mention just briefly for people who have never worked or who have worked very limited erratic timelines in their history.

There’s two different categories for which you can be paid. One is SSDI, and this is money that’s earmarked out of the retirement money that previously employed people have contributed. So say for example, an autistic individual just pushed themselves to the brink of destruction, but maintained steady employment.

Recently for certain period of time, they will actually draw their money from the money they contributed, not their personal money, but from the pool of money that people contribute to for people after 65. And so it comes out of money they’ve contributed, right? It doesn’t reduce your social security amount, but that’s where the pool of money comes from. For people like my son or some people who haven’t worked recently, they may be more likely to qualify under SSI, not SSDI.

And this is where there are strict income limits and, you know, you have to be very diligent and it’s based on need. So in the beginning of your case, even after you win, you will only be eligible for the money you need to live. So if you’re living at home with your parents and they’re providing housing and you’re not paying any rent, the amount of SSI you can get is greatly reduced.

Now you do get Medicaid in the beginning, and then later Medicare as you get to be in the system longer. So I don’t want to diminish the value, even if you’re only getting $15 a month, having the healthcare makes it very worth it. But what we want to help parents do is over time, start in fact charging those costs.

So I think my son initially was only granted $125 a month. So we reported within a month that my son was paying $75 a month for housing. So his next check considered that and increased. And you have to work incrementally increasing that until they get the maximum amount. So now my son gets, you know, around $800 a month.

And we report that all of that, but a hundred dollars goes into his living expenses. That allows us to keep the, the amount he earns very, very high. Um, to the max. It allows him a hundred dollars a month in spending money, but it also allows us to, say, pay back some of the student loans that were not included in his student loan forgiveness, which is another topic for another day.

And it also, you know, allows us to pay for things like his inserts for shoes are not covered by Medicare. His glasses are not paid for by Medicare. And so. So it’s, uh, it’s even after you get approved, there’s again, another timeline of gradually increasing their expenses, at least on paper so that they in turn need more money.

So they earn more money from SSA.

Brynne: Now, when you say gradually increasing, how much over how long of a time do you do that? And are you increasing just the rent bill or are you keeping the rent at $75? And then adding other expenses as time goes on as well, like food and all of that.

Dena: Yeah. Well, for food, they should be on food stamps.

That’s another, again, another topic, but you know, as long as they prepare their food and purchase their food, separate from you, which who’s going to watch that? But I don’t know about you, but my house, my son eats stuff I’d never put in my body. Like he’s very inaudible so he doesn’t eat what we eat. So that’s an easy sell to get food stamps, but it’s also needs based.

But, you know, in terms of the other expenses, that varies from state to state. So for example, in West Virginia, we had to show that he was paying rent and water and utilities, but in Kentucky, we’re able to group all of those together into a single expense. So I transfer $600 a month into my husband’s bank account.

And when we report, we say that that’s being used for his living expenses, including utilities. They’re not asking for us to be more specific in Kentucky. And by the way, we don’t have to show receipts or any documents. We just have to ballpark it. But we do have to demonstrate that he uses every single penny.

And it was interesting. I did report that he spends a hundred dollars a month on recreational and personal expenses to learn the skill of using money and social security was ecstatic about that, even though that’s not as readily tracked because they saw that as a springboard to independence. Right. Um, yeah.

So, you know, it’s it, once you get to that place, this is like a once a year kind of reporting process or every six months. It’s way, way simpler.

Brynne: Awesome. Awesome. I’m learning so much from you today. Thank you so much. Now we talked a little bit about this with food stamps. When you’re on SSI in particular, SSDI has like its own limitations, but the really restrictive program is the SSI.

So your income is just inherently capped in order to receive those benefits. So we talked about, you know, you might also need food stamps, um, are there other, I’m assuming Medicaid and Medicare play into this as well. What are some of those other programs? And is there anything people should be aware about how those programs kind of overlap with SSI in particular?

Dena: Well, first of all, people need to know that you’ll get Medicaid if you’re low-income. And you have expenses, um, probably for approximately two years. And then you’re also eligible for Medicare in many states. And again, you have to ascertain from state to state how those systems interact because Medicaid is a state system and Medicare is federal.

And it’s interpreted differently in different states. So I can’t get any more specific than that. I can say if you’re extremely low income and you have to pay for Medicare, you know, you have to pay for that insurance. Medicaid has an option whereby Medicaid pays your Medicare premium. It’s called dual enrollment.

And so people can look into that in their state to see how those systems interact. I will say also, if you’ve even applied for a social security that makes you automatically eligible for vocational rehabilitation, but here’s the caveat again, because VR is a state program. VR gets to set the priorities over who is served, what services they provide.

And there can be wait lists in different states. But again, there was a federal initiative where there was an influx of money that was pushed into VR services specifically for autistic people because they were the most underserved, but COVID is messing up everything with all these systems. So it’s going to take determination, persistence.

You know, in a way we’ve never experienced before. They’ve shut down many social security offices, many individuals left the field because they didn’t want front-facing employment anymore. Everything is being done virtually or over the phone. Things are backed up atrociously because of COVID long haulers entering the system.

Not that they don’t deserve to be served. Many of them are also our folks. Right. Um, because people with IDD had greater risk for COVID co-occurring issues than anybody else, other than the elderly. So, you know, again, it’s just going to take that determination. But I encourage people to go to things like the arc or the autism society in their area.

Even in some cases where there’s a physical impairment, United cerebral palsy to kind of get the inside scoop on how it works in your state, because it’s going to be tweaked a bit, depending on the state. I hope any of this is helpful, usable, translated appropriately. So people can really utilize it.

Brynne: Oh my gosh. A thousand percent. And thank you so much for being here with us today. Before we go, I do want to ask you what are like the top, like one or two places where people can find you and connect with your work. Everything that you’ve provided today is so, so helpful to me as a parent. And I know we’re going to have listeners to want to connect and learn more, as well.

Dena: Currently I’m in the very bitter throws of writing a dissertation. And I’m really keeping my availability very, very limited right now because I just can’t do anything but dissertate. Plus I’m doing all of this international science research. I’m on five or six different research studies. So really right now is not a good time for people to be able to find me in terms of individual casework or anything like that.

I do have a Facebook page called the center for understanding that people can join. If they just want to see me, uh, they’re posting autism research and autism news and disability news more broadly. I do like have a little bit of a Facebook addiction. So I post not my work, but the work of other people there quite often, and that’s the best place to be exposed to my work.

I’ll probably be doing some training events occasionally, and that’ll be publicized there. But unfortunately until I finish this dissertation, my access to, you know, the general public is pretty, pretty tightly guarded, but I’m really glad that you persisted. And we got to have this time together because I’m really better at giving this information to broader audiences because I can impact more people that way.

As compared to me working one-on-one with a family. I’m hoping after my dissertation to develop a train the trainer model, where I can actually teach systems navigators more detail about how to do this. I want to acknowledge that part of the reason I’m effective at this is because of my broad reaching knowledge of how autism expresses itself in a variety of people.

I’ve helped over a hundred families work through this system. And I don’t think that’s replicable, but what I taught you today is replicable. And I think that we can create agencies that do nothing but the systems navigation support. So that’s where my longterm professional goal is, and I love doing autism research.

So I’ll be probably camping out there. Lastly, let me just say, I teach a class at Towson University, a transition to adulthood class in their health sciences department. It’s taught online and some semesters people can audit that class. Other semesters, uh, like for example, I have five occupational therapy, PhD students right now, like that we can’t move those folks, but people can contact my supervisor.

Who’s Dr. Connie Anderson to ask what semester they might be able to come in and take the class free standing from the. Autism certificate program if they’d like to. So those are just some places that I can, I can see people and find people. And that whole semester focuses on all of these systems, all of the social justice issues.

We talk about the neuro-diversity lens and exiting the medical model.

Brynne: Thank you so much again, Dena.

Dena: It was a blast. Thank you for having me.

Joyce: Thank you.

(whooshing sound)

Brynne: Thank you so much to Dena for joining us today and sharing her amazing system and tips with us. If you liked this episode, it would be super helpful if you could leave a five-star review on whichever platform you’re using to listen, whether that’s apple podcasts, Spotify.

Another platform entirely, but those five star reviews they really helped us gain visibility. And here’s something about the topic we’re talking about: When it comes to disability finance, this is not information that’s easily accessible. Joyce and I actually created this podcast because we ourselves had trouble finding this information despite each of us working in this field of personal finance for over a decade.

So every five-star review is going to help us get more visible, help more moms find this information and up their finances. Everyone who listened last week is going to remember that we talked with chilis about just how important entrepreneurship is to the autistic community and the disability community just generally.

And we touched on the fact that your office of vocational rehabilitation offers resources to disabled entrepreneurs. Now next week, Dena’s actually going to be joining us again. And she’s going to be sharing more about these resources in depth, including ways you can use voc rehab to get funding for your new business venture.

That means if you’re an entrepreneur and you have startup expenses, you can actually, in some cases, get vocational rehab to pay for them. We’re also going to cover how to navigate some of the W2 employment resources available through these offices. So make sure that you’re subscribed to the podcast on the listening platform of your choice.

And what that’s going to do is it’s going to automatically download it for you when it comes out so that you can be sure that you won’t miss any of that super important information. Alright. We’ll see you guys next week!

Joyce:  Bye!

Skip to content