Episode 33: Marriage Penalty

4 months ago

Kimberly talks with Allison Hayes about the marriage penalty and the perils and pitfalls of financial planning for disabled people.

Visit Alison’s website at: thrivingwhiledisabled.com

For coaching services, reach out to her at [email protected]

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

Visit Moving Forward, the Advocado Press blog.

Send comments and questions to [email protected]

Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript Welcome to Demand and Disrupt the Disability Podcast.

Here, we will learn to advocate for ourselves and each other.

This podcast is supported with funds from the Advocato Press based in Louisville, Kentucky.

Welcome to Demand and Disrupt a Disability Podcast.

I am your host, Kimberly Parsley.

And I'm Lisa McKinley.

Thank you for joining us.

How are you, Kimberly?

What's been going on?

I'm doing very well.

I am just...

The kids are home from the summer, so it's been busy.

We got the puppy.

I'm trying to relearn braille, which you...

Bless your heart.

You're so patient.

You're such a kind soul, Lisa.

Lisa came to my house to help me to figure out the NLS, which stands for National Library Service for the Blind and Print Disabled.

And she came to my house to help me use the e-reader, which is basically a braille display for books.

And it's great and it's awesome, except it doesn't have speech.

It's just all in braille, which is wonderful if you can read braille, which I can't, and...

Well, I can, and I used to could a lot.

And now I apparently can't anymore.

Are you figuring it out?

Well, you know, I'm trying and I'm working on it, and I don't know why I want to.

It's just a thing.

And now that I've started, I just can't make myself not.

And so this is interesting.

Tell me if you do this, too.

It's like I have this thing in my head that just because I know a thing intellectually, my body ought to respond accordingly.

Do you know what I mean?

For example, I know the code.

I know the braille code.

I know what an A is, a B is.

I know what all the letters are.

But in my case, it's my thumb.

What I read braille with, I know what it boils down to is a practice thing.

It's just keep at it, keep practicing.

But I just have it in my head that because I intellectually know how to read braille and I know all these things, like I could take a test over it and pass.

What's the sign for A and D or whatever?

I could do that.

I think I ought to be able to read braille.

And it's just sort of annoying that that's not really how life works, you know?

So it's not coming to you as your fingers or your thumb is not picking it up as fast as you'd like it to.

Do you think it's like just that neural pathway from finger to brain or what do you think it is?

I think it's probably that.

I think I just need to practice.

Like, I think I just need to practice and over time it will just come.

And it's kind of like it's like how we teach the kids to ride a bicycle.

Neither of my kids can ride a bicycle, by the way.

It's like, you know, when you're teaching a person to ride the bicycle, you tell them like this is the bike and these are the parts and this is what you do.

But there just is there's no shortcut between you just have to keep falling down and getting up until you learn.

Right.

Yeah.

So I think it's that it's very frustrating because I am sort of an overachiever.

And I really like once I decide I know a thing, I like to know a thing.

And this is just not working with me.

And so anyway, I think you also decide, you know, you think you're going to devote X amount of time and, you know, progress should be coming faster based on the time.

And it takes longer than you thought.

That is true.

And sometimes you stop with a thing and you're like, OK, is it worth devoting this much time to?

And, you know, I think with the Braille, you really want it to work.

So you're just going to keep pressing on at it, I think.

That's true.

And when you're, you know, everybody's life is so busy now and you have so many things that you have to do and to take, you know, however many minutes a day you I think you're constantly fighting.

That is, is it worth it?

Yeah.

Is it worth it?

Yeah.

With so many things.

That's that's true.

But you're so sweet to have come over and tried to help me to learn how to.

It wasn't that great of help.

But thank you for being nice.

It took you and also both of our husbands who are tech guys.

And we still only got 30 30 percent of the way where we need to be.

Yeah, it was a team effort.

It really was.

So what's going on with you, Lisa?

Well, I've been, you know, doing the whole massage school thing.

I'm home on break.

We're taking a little summer break.

But what's been really interesting is after class, I I go down to Circus Square Park and there's a bench in front of the waterfall or the water fountains.

And I wait for my husband to pick me up.

And I'm telling you, I've been meeting some very interesting characters, including last week a young man.

I believe he was probably late 20s, early 30s.

He came up and he asked if he could pray for me.

And no, you know, man, man, that's not the first time that's happened.

I'm sure it's it might have happened to you at some point in the past.

And here's the thing.

It's not the fact that someone wants to pray for me because, you know, heck, I'll take all the prayers I can get.

But the fact people want to pray for my eyes to be open, for me to be able to see, it's almost as if this is something that needs to be prayed away.

And I think we need to be careful about that.

You know, in the man's sister.

Yeah.

So when he asked me, my response was, you know, because I am a Christian and I do pray often.

And I said, you know, you can pray for me, but but not for that.

I said, you know, I think God uses me more effectively as a blind person.

That's what I told him.

That's what you told him.

Yeah.

Well, and what did he say to them?

He's like, oh, well, you know, the word tells us that, you know, blind eyes will be open.

And at that point, I just let him do his thing because he had a script and you weren't following the script.

Yeah, I kind of.

Yeah.

I busted the script.

Right.

A part of me appreciates boldness of a person and the other part of me.

You know, I don't want to be constantly reminded that society sees my disability as problematic and something that needs to be corrected.

Right.

Yeah.

Well said.

But I am, you know, I'm genuinely sorry that that happened to you because that is off putting and can really just ruin a person's day.

You know, so I just try to remember and remind myself at the end of the day, they are their intents are good.

You know, there is no what you know, and maybe they just don't know.

I mean, is there intent people who do that?

And I've talked to several disabled people and, you know, many, many of us have had that experience.

Is the intent to actually pray for someone and hope to change their life or is the intent like a virtue signaling?

You know, like I am so much of a Christian.

I'm going to do this right here in public in front of everybody.

You know, yeah, I don't know.

That's an interesting question.

Sometimes I think they might do it because they really want to test the powers and just that they would just be absolutely blown away if somebody's eyes were opened and could see.

Maybe they're now the next time it happens, you have got to jump up and say, I can say, you've got to do it.

I've been healed because if we can't laugh about it, y'all, you know, then we just can't get through it.

That's the only way is just to laugh about it.

So along these same same things, did you know that July is Disability Pride Month?

I did know that.

Yeah, I, you know, I know it and then I forget it until like July.

Usually, hey, at least this year, at least this year, it came to my attention at the end of June instead of the end of July, which last year I think was.

I only knew it because you told me earlier like 10 minutes ago, but it started recording.

So, yes.

Well, you don't have to tell them that part, Lisa.

But yes, so Disability Pride Month, and it makes me wonder how if, you know, I don't, I don't not celebrate Disability Pride Month, but I also don't celebrate.

So I wonder what would be a good way to celebrate Disability Pride Month?

I mean, I will definitely be on the lookout for celebrations that people are having or things that are happening, you know, public events, that kind of thing.

I'll definitely be on the lookout for those, but like individually, if you were going to like celebrate Disability Pride Month, what would you do?

That's a good question.

I don't know.

Do we have a parade?

We ought to have a parade with not us leading it.

No, no, no.

About a nighttime parade of blind people because we don't really need to see.

Or a big float that's in the shape of a wheelchair.

Now that would be cool.

Yeah, we should, we need a parade.

A parade?

There aren't enough parades if you ask me.

We should have a parade.

I'm sure there probably is one somewhere.

A parade is always good.

I don't know.

I'm trying to think in my mind, you know, is there a separation or difference between bringing awareness and celebrating pride?

I mean, I think that there is or there should be.

Yeah, I think it should be for us.

Celebrate our pride.

Yes, exactly.

That's what it was.

Yeah, it should be for us.

Yeah.

Like, like I think like all the restaurants should have like, I don't know, dollar margaritas for all the disabled people or something.

Yes.

You know, stuff like that.

A celebration should be about us, us enjoying it, having fun and also, you know, being with other disabled people because I think that is important.

Yes.

And it should be a celebration of just how like the rest of the world we are and not we are different because of X, Y, and Z disabilities, but that would celebrate just how much we are all the same and can we do things, but we might do them differently, you know?

Yeah, that's what needs to be celebrated because I think we get can get down on ourselves about all the things we can't do just like the rest of the world does.

But dang it, we find a way to do what we need to do and we have fun in the process and that's what we need to celebrate.

That is, I think that's very well said, Lisa, as always.

And you know, if I find information about celebrations or things going on, or if anybody wants to, you know, write up something about this topic, the Advocato Press, who is supports the Demand and Disrupt podcast, they have a blog, it's called Moving Forward.

And I'll put a link to that blog in the show notes for people to look at and great content on that already.

They've been going I think about a month or so now.

So some wonderful content and Tina Jackson is the person who is editor in chief of that blog and she creates a lot of content.

So I'm sure she would love it if you wanted to reach out to her through the blog page and maybe submit something.

If you have ideas about Disability Pride or Disability Pride celebrations, any of those things that I'm sure she would appreciate that and continuing on the theme of stuff we don't know.

Also, this week when we're recording this is Learning Disabilities Week.

So by the time listeners hear this, it will already be over, but I never want to be constrained by time limitations.

As the length of my interviews can sometimes show, I want to go ahead and talk about that learning disabilities.

So you know, I working at the Center for Accessible Living every encounter I have with anyone with a learning or developmental disability shows me something new, tells me something new, teaches me something every time.

So if you're a listener and you have a learning or developmental disability, I would love for you to reach out to us at demandanddisrupt at gmail.com and let us know maybe what do you wish people knew.

What kinds of things do you wish people knew about having a intellectual or developmental disability?

That would be great.

I would love that.

Absolutely.

And that's what will make our program successful and helpful to more people.

If you all can write in, let us know and then maybe in the future we can interview someone on that topic.

Oh yeah, that would be great.

Yep.

That would be great.

I actually have someone coming up.

I think I haven't done the interview yet, but I've got a contact, but you can never have too many contacts for interviews, right Lisa?

No, no, not at all.

Our next interview, our interview guest this week, I interviewed Alison Hayes.

She does a website called Thriving While Disabled, where she talks about financial preparedness and planning when you have a disability.

So lots of good information there.

Everyone stay tuned for my interview with Alison Hayes.

Hello everyone.

I'm excited to be joined today by disability writer, advocate, and coach Alison Hayes.

Hello, Alison.

How are you?

I am doing great and it is so nice to be here.

Wonderful.

I'm so glad you could make time for us.

You've got a lot going on these days, huh?

Yes.

I've been very busy with my book.

Excellent.

And we're going to talk to that.

So talk about that because that would tease that out there.

There's going to be a book full of information coming up for our listeners.

So in the book, A Celebration of Family, I am chapter 23 in that book.

I may have mentioned that time or two, not that I'm bitter to be so far at the end, but not far enough to be like, like the last, like you're the last chapter, like the final, isn't she awesome chapter.

See?

So it's, it's kind of unfair.

I'm telling you, but you are chapter 26 rounding out the book right before just the conclusion and your chapter is about something called the marriage penalty.

So can you tell me about that and how you became interested in this topic?

Okay.

So the marriage penalty basically is the fact that people who are on SSI, Supplemental Security Income, if they get married, they're actually penalized for it financially by social security.

One person getting SSI benefits has Medicaid coverage and can have up to $2,000 in assets.

However, a married couple on SSI can only have $3,000 of assets.

So what happens is the couple loses access to $1,000 worth of assets if they get married or as SSI puts it are living as married, which is a very vague and open to interpretation statement.

And it's kind of intentionally that way.

So what the way it works is people in SSI have very limited incomes and very limited assets.

And so it's just, if they go over that magic number, and for one person, it's 2,000, for two people, it's 3,000.

They're no longer eligible for SSI, which means no Medicaid, no checks.

They may lose their eligibility for additional financial based programs as well.

And these are all the things that somebody on SSI needs to survive.

And the other bit and the other thing that people don't always realize is anything that's shared between them can be counted twice, not just for one person but for both, and they can both be penalized for it.

So basically, if you have a shared bank account, that money is counted towards that total.

And so as soon as the couple is over the number, they lose everything.

And so just because you're okay with each person on SSI getting married, having the same amount of assets, they can lose everything.

And this just isn't well explained anywhere.

And it's something that generally isn't talked about.

And so people on SSI get married or are viewed as living as married and then can lose all of their benefits.

So what inspired you to start Thriving Well Disabled?

Well, okay, so I have a condition called functional neurological disorder FND, which is a stress responsive neurological condition.

So basically, whenever I'm dealing with any certain level of stress, I have muscle movements and few other symptoms.

I've actually grown up with the disabled identity that I didn't think about it that way for a long time.

When I was very little, I had like a gross motor disability, I was able to kind of get that down to fine motor issues, which I still have.

It translates into sometimes I grip, you know, pencils and utensils a little funny, and my handwriting is terrible.

But you know, I've learned I learned quickly how to kind of navigate around those things.

I've also got a history with depression and anxiety.

And all of it together led to me applying for disability when I was only 23.

And my symptoms had actually started while I was in college.

So I had a lot of like rebooting that I had to do with my life.

In that process, I started this is my second business, and I've worked part time a lot.

And so I've been on and off, I've never been completely utterly off of SSDI.

But I've had a lot of times that I've made decisions that put my benefits a little at risk and figured out how to backtrack that.

Yeah, yeah.

And and so that whole process had me learn a lot about the systems.

My partner, we've now been together 13 years, but the year before I started Thriving Well Disabled, and the reason I started it was he fell and shattered his acetabellum, big hip bone joint.

Oh, my goodness.

Yeah.

And it took us about a year to get down to what caused it.

And he was watching me take care of all of his medical stuff, and just talk to the doctors, talk to the insurance, figure all that out, get him the coverage he needed, you know, get him on temporary disability, all of the different pieces that we needed to go through.

And he was like, Oh, my god, you understand this so well.

I don't know how many other people do.

I know I would have been completely lost if you hadn't been here and, you know, carrying all this and knowing who to call and what to say and how to make it work.

And I was, you know, trying to figure out what I was going to do next with my life.

And so after some conversation, Thriving Well Disabled was born as a way for me to share what I knew with other disabled folks so that people have a better chance of success with all of these different barriers we face.

And so that folks would have, because so many of the supports that are out there are able people who are doing it because it's a bureaucratic job, not somebody who's been through the system.

And so I wanted to come in as a person who's been there and done that and gets how it works and why so that I can give like, guidance and help in navigating it.

And I don't have a dog in the game, so to speak.

I'm not beholden to anybody.

I don't have to talk nicely about what they're doing or try to make up for their lacks, but I can say straight up, this is what I saw.

This is how it worked.

And here's my understanding of why this happens this way.

Having a supportive partner is amazing, isn't it?

It's wonderful.

That this marriage penalty situation has the effect of depriving people of that really pisses me off.

Yes, there are ways to work around it, which are interesting too, but it's all very frustrating because we have to figure out how to work around it.

My partner and I are not married basically, in part in solidarity too, with the people in SSI who just really can't with being an SSDI.

I don't have as much to worry about there.

But one of the big things is that it's about money and sharing money.

And so I would always advise folks on any of the disability programs to keep their finances separate from their partners, unless you are legally married and then everything is everybody's.

But my partner and I keep separate bank accounts, pay bills somewhat separately.

We're each paying about half of the household costs.

So we can be what we need to be as the situation requires.

So if I need charity care to help offset a medical bill, I'm a household of one.

And then we don't have to worry about what his financial situation is.

And I don't have to turn in his paperwork and I don't have to, you know what I mean?

There's a lot of extra headaches that come with having another person legally in your life.

And so for that reason, think about that too.

And you technically can be married on SSI, but you have to live separately in order to keep your benefits.

Yeah.

I got married and didn't know any better.

And immediately his minimum wage job was, wow, we were just loaded.

So I lost my SSI.

So, yeah.

Oh yeah.

And that's the thing.

Too many people don't know or don't understand what it means.

And they don't explain it to you.

They do not explain it at all.

And it makes for so many problems and so many headaches.

And yeah, so like my partner and I talked about it and we're like, we're not going to get married to protect ourselves.

And after he broke his hip, we actually had a little while where we didn't know if he would be able to return to work.

And we discovered the only program he might have been able to be eligible for because he'd had a brain injury a few years earlier that kept him out of work for a year.

And he'd lost a job.

He'd lost employment for a while.

When the bubble burst in 2008, he would only be eligible for SSI if anything.

And so the fact that we weren't married was the only thing that gave him a chance of having any support whatsoever given his work history at that time.

And so in that moment I was incredibly grateful that we'd never gotten married because at least he could have had something if worst came to worst.

You know, it strikes me that when people who are rich try to protect themselves, protect their futures, protect their assets, society just deems that as normal behavior.

But when poor or disabled people try to do the same thing, it's somehow looked upon as though we're trying to scam a system.

Yep.

That's a common accusation, which goes back to the idea of we're living off the taxpayers because we're getting benefits.

But the point of the benefits is to allow for a functioning society by having us have money to live on.

And the money that we're provided is completely inadequate.

Another thing I've got in my book is I'm talking about the basis for the federal poverty level, which is that amount that they want for every application for every financially based support program.

That amount, the federal poverty level is still the very basis of it is what it cost for a family of three to not die of starvation in 1955.

Wow.

That's still the number?

That's still the equation.

The number changes every year.

But basically, it's three times the value of the minimal amount of food to survive.

Right.

The minimal amount.

Yes.

Right.

So like you're saying, there's like, yeah, like basically, the Department of Agriculture has created like nutritional assessments and said these are the foods that say like, basically, it's nutritionally adequate for the short term.

And so they take the value of a nutritionally adequate diet, what it would cost for a month and multiply that by three.

And pretty much that's your federal poverty level.

Right.

Which is truly absurd to think about because what did people in 1955 spent, I mean, it was less than 10% of their household budget was food, right?

I mean, it's something like 5% or something.

Well, it was larger.

But the thing about it was at that time, they didn't have a lot of what we consider essential supplies.

Like, there weren't, you know, now we have to pay for cell phones, now we have to pay for internet access.

Also, food at that time was almost entirely the raw ingredients that then the housewife did the unpaid labor of preparing.

Right.

And the housewife did the unpaid labor of caring for the kids.

And, you know, the other part is, okay, you can cut how much you spend on food, but your house is still your housing is going to cost the same as it did before.

And so the woman who created this calculation was not trying to do anything like what they've used it for.

She was trying to get basically, she was like, we can't agree on how much is enough.

Let's at least agree on how much is too little.

And this was her conservative underestimate of how much was too little.

How much was too little.

Right.

And someone on SSI is not even making it to that level today.

Right.

Yeah.

Okay.

All right.

So yeah, so like that's just so you see what I mean.

The background is, yes, it was like, this is how much is too, she made a lot of other calculations and they use none of them.

This was the cheapest one.

And there have been two studies done since then, but neither of them was brave enough to put out like an actual equation.

So nobody adopted any changes.

So this calculation was created in 1965.

And other than being simplified a couple of times, no major changes have occurred in how they make these calculations.

Wow.

Is there any way to interpret this law and these rules as being other than just an attempt to keep disabled people living in poverty?

Not really.

I mean, it's the idea of it in theory is that it's part of marriage equality.

Once people have access to assets, when they're married, everything belongs to both people.

But it's just, as a disabled person, we deserve to have basic rights.

And SSI itself is just a financial based program.

That's the other part of it.

It's a entitlements program.

Yeah, sorry.

We're just covered by it.

Yeah.

So how did this become, how did this become a topic of interest to you?

Well, I'm really interested in how the entire social welfare system works.

I've been living on SSDI for most of my life.

And I remember as a young adult, because I went on to SSDI when I was 23, I was suddenly facing these ideas of maybe I couldn't get married, maybe that wouldn't make sense, what was going to be necessary for my financial future.

And so I looked into all of these things.

I also just generally investigated how social security works and really have gotten to know the system pretty well.

So for me, the marriage penalty and SSI is just, the disabled community is one of the only ones, one of the only communities out there that were penalized for getting married as opposed to rewarded.

And this SSI is like the biggest symbol of that.

To me, it's more signs of the structural ableism.

We're assumed to be incapable and we're assumed to be someone else's problem.

We're our spouse's problem, we're a parent's responsibility and so on.

And this decision to have our marriage assets counted against us is just more proof that the assumption is disabled people who are on SSI benefits can't and won't get married.

And SSI primarily is covering the folks who have been disabled their entire lives, who have never been able to have a work history.

And yeah, it's one of the more identifiable classes of disabled folks in that sense.

Right.

And I know you'll agree and it's worth pointing out that when you say has no work history, often not because of anything to do with us, the disabled people, but because people won't hire us.

Absolutely.

There's a lot of bias and discrimination involved.

So like for any disabled person, our first question may be what can I do?

But once we figure out what we can do, we're then faced with society's assumptions of what we can and can't do, which are often much, much more limiting.

And every step of the job application process, the society's bias against disabled people makes it that much harder for us to get the interview, get the position, get to the next step in the hiring process.

So yes, I'm not saying people in SSI are not capable of working.

SSI, just a lot of the people who are on it have been living with disabling conditions since childhood, or have just not been able to reliably find or keep work.

I knew that's what you meant.

I just wanted to point that out.

I think it's important to point those things like that out, that the deck is so stacked against people with disabilities.

It's just not a matter of, well, if they wanted to, they could.

Oh, no, it absolutely.

I have never met a person for whom that was the case.

Oh, absolutely not.

And it's interesting with having the differences between like looking at all the differences between SSI and SSDI.

There's so much in there that's these assumptions of failure in both parts, but everything about the social security process is just painful and ableist and difficult.

By design, I think some might say, right?

I would argue that it's not malicious design because they didn't bother thinking about us that way.

No, I'm serious.

Because basically what it is, is everything's written from an abled perspective.

And they're building on these abled assumptions.

And so those of us who are disabled who are applying are having to contort ourselves in different ways and are handling an ablest bias for every single step of the process.

Everything needs to be done exactly, just like any other bureaucracy, things have to be done exactly the way they want it done, using the words they want, in the format they want, even though the questions themselves are poorly worded, not well defined, and make assumptions that may not be true in your particular case.

Like every piece of this.

The other big thing is the laws themselves have pretty much not been, they've not had any major adjustments since very early in the process, like very early in the history of social security.

And so a lot, there's been small changes.

But the large, but the, there's been no large scale change.

I mean, the asset limit for SSI is $2,000.

Now, now there, yeah, right.

That's laughable nowadays, isn't it?

Exactly.

I keep hearing rumblings that that was going to go up.

Did that ever happen?

It has not happened, to my knowledge.

There was a push to bring it up from $2,000 to $10,000, which would make more sense.

That would be, yeah.

But to my knowledge, that change hasn't happened.

And I'm not sure where that is.

I just know I haven't, I heard the rumblings too and I haven't heard anything since either.

Ah, okay.

Okay.

Yeah.

It's the, in fact, there's only one program out there that acknowledges that being disabled is more expensive than being abled.

Really?

And that is the ABLE Accounts, Achieving a Better Life Experience.

Are you familiar with them?

I'm not.

Can you tell us some about that?

Absolutely.

So ABLE Accounts are, they're a program created by the federal government that allows disabled folks to put away money and not have it count towards any of the asset limits.

You as an individual can create an ABLE Account or a person's family can create an ABLE Account for them.

But it's especially useful for people who are on SSI, but it can be used by people on SSDI and people who haven't applied yet but became disabled.

It used to be earlier in life, but actually that rule is about to get changed too.

It was originally put together, I think, mainly for the wealthier family members of people with developmental and intellectual disabilities who would need supports for their entire life and might not be able to live independently.

But at this point, these accounts are basically bank and sometimes investing accounts that you can create that are, structurally, they're similar to like a school savings account you might start for a kid that you then would keep going as they grow, as they age.

And then you've got money at the, you know, when they go to college that they can use for college.

It's a tax protected account.

And you can have up to $100,000 in that account and still be eligible for social welfare benefits.

Okay, okay.

Including SSI, including Medicaid, all of it, all the financial based ones.

The money that's inside your ABLE Account just doesn't, isn't counted, as long as it's under that hundred thousand mark.

So I think a little more than that now.

Okay.

So basically, it's a way to save money and it can be used as a retirement account as well.

And the money in it just has to be used for anything related to your disability.

But that includes like housing and food.

Oh, okay.

Uh huh.

Yeah, exactly.

So basically, it's yeah, it's a way to protect yourself financially from losing out on the different, you know, from losing out on the care you need.

Because a lot of people, you know, have to stay eligible for Medicaid in order to get the community based waivers and things like that.

So this way they stay financially eligible for Medicaid, but they've got some money put aside to help them actually have a reasonable life.

Yeah.

If everyone I think knows that when we start talking numbers and money, Kimberly gets well and truly out of her depth here.

So, but fortunately you have a website that is very thorough about this and other topics relating to disability finances.

So can you tell me what that website is?

And I will of course drop a link in the show notes, but just just in case there are people grabbing note taking devices trying to jot things down, I want them to have where they can be able to, I want to, I want people to rest assured this information is not going to have to be filtered through me.

You can go get it from Alison.

So what's your, what's your website?

Okay.

So my website is thriving well-disabled www.thrivindg.com.

And basically I've got a, I've got a blog on there.

The book contents were taken from one of my blog posts and I've got close to 200 blog posts up all about disability, living with a disability, different angles on medical care and healthcare, and a lot of stuff on how social security disability, supplemental security income, and other programs that we survive by work as well as how to use them.

I offer coaching services to, to help people apply for disability and get on it or to figure out how to really think about working while on disability so that you have control over when, if, and how your benefits, because when you talk to people at like workability and other, if you talk to, when you talk to people at a lot of the programs they're supposed to support you, take it to work, they make it sound like if you're thinking about work, that means you're going to get off benefits.

And that doesn't have to be the case and it's something that you want to be thinking about carefully.

And they're not always good about explaining what the rules actually are or how to work within them.

Wonderful.

Yeah.

You're, you're definitely right about that.

So that's thriving while disabled.com.

And again, we'll put a link to that in the show notes.

And again, in the book, A Celebration of Families, the, your chapter is chapter 26 where you talk a lot about this, but since we're talking about books, you have some exciting things coming up.

So can you tell us about that?

Absolutely.

So I'm writing a book now, Disability Finances, Budgeting Your Money and Energy While Navigating Broken Support Systems.

I know that's a mouthful, but just search for disability finances.

It should pop.

I love it.

I love it though.

I really do.

I love it.

Yeah.

Because the thing about it is having a disability is expensive and not just in terms of money, though it definitely is financially expensive.

It's also emotionally expensive.

It's also expensive on the energy level.

It also can be socially expensive in that we have friends and family and strangers who don't understand and the ableism and bias is really baked into our society.

And the time expense.

Yes.

The time expense is huge.

And we're doing all of that with fewer usable hours in the day because that's part of what comes with having a disability.

The exact reasons are going to vary from disability to disability.

But for a variety of reasons, the things that able people tend to take for granted take us longer or we're less able to do them.

So as an example, some people need 10 or 14 hours of sleep just to function instead of being able to function on six or seven or eight.

Others of us that just activities of daily living take longer.

A lot of us dealing with invisible in non apparent conditions like dealing with mental health stuff.

For us, it might be processing time or it may be building up the energy to do things or, you know, that self-regulation that needs to happen that takes extra time.

But all disabilities, we end up with fewer usable hours in the day.

Fewer hours where we can just do what we really want to do.

And so my book acknowledges that and helps people recognize that that's happening and what they can do to help manage it.

My central focus is the meat and potatoes of the programs to survive on like social security disability.

But I want to make sure people are also thinking about what we're a part of, how society itself is ableist and how we can take care of ourselves while we're working on taking care of ourselves.

Yes.

That's very well said.

And you're right.

Disability is expensive in so many ways.

And so the marriage penalty and those kinds of things, that's going to be all talked about in the book?

Absolutely.

Yep.

I'm going to have a section talking about the marriage penalty.

I talk a bit about taxes, banking, talk about the community development finance institutions and other ways to get financial support.

I've got a lot about working and thinking about work while disabled.

And like I said, the goal with this is for it to be a guide with lots of resources that you can go to to get more information or know where to apply and so on.

And just have a sense of what to expect with each of the options that are available.

Most of what I talk about in the book are things that I've personally explored, applied for or utilized.

And I'm sharing what my experience was while I was doing them as well.

So people can have a sense of what to expect and why.

And Nanou, you said when we were talking earlier, you mentioned that you're scrambling trying to make sure that you get the most up to date information in the book as possible, correct?

Oh, absolutely.

The other part is most of the information that changes, what changes are the numbers, not the concepts.

So a big part of my focus and how I'm writing this is making sure that my readers know what the terms are that describe the rules.

And so they can always double check the particular piece.

Because when you do, like for example, within working, substantial gainful activity is a term that comes up a lot, SGA.

It's a number that changes every year.

But if you know that you need to be under SGA, your income needs to be under SGA, you can always look up what SGA is this year.

Once you have the acronym, getting the details are easy.

That's my focus with this.

And when is the book coming out?

Our publication date is October 8th of this year.

So I am very excited.

Yeah.

Are you nervous?

Yes.

I've been I've been working away on it.

It's over 200 pages long.

And it's I've got a lot, a lot crammed in there.

And basically have taken good chunk of information from my blogs, plus a lot of extra details that as I was writing, I was like, Oh, I need to talk about this too.

And so my goal is for anybody who's disabled, who's living with a disability to have this as a resource so that they can check or double check what they're what, how to find what they may be eligible for, how to think about the processes that they might have to go through and how to make sure they're as protected as they can be as they move forward to the next step of their life.

Okay.

And that's disability finance, finances, finances, disability finances, disability finances, and shoot me that subtitle one more time.

Absolutely.

Budgeting your money and energy while navigating broken support systems.

It's long, but it's thorough.

It covers it.

It hits it right on the head there.

So that's Alison Hayes.

And anyone, like I said, I'll drop a link to her website in the show notes, and then I will drop a link to her in the show notes.

And if anyone is interested in reaching out to her for coaching services, if you are going through some of these big financial changes, they can reach out to you from that website, correct?

Absolutely.

Also, my email for this is Alison at thrivingwelldisabled.com.

Excellent.

And that's Alison with one L, correct?

Correct.

A-L-I-S-O-N.

Awesome.

Thank you very much, Alison.

We appreciate it so much.

Thank you.

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Demand and Disrupt is a publication of the Advocato Press with generous support from the Center for Accessible Living located in Louisville, Connecticut.

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