Interview with Journalist, David Perry; "Pay to Stay: How Policy Is Undermining Disabled Lives"

Mark (: 00:00

welcome to the podcast. Thanks so much for being here, David.

David M. Perry (: 00:02

It is just a pleasure.

Mark (: 00:05

I came across your article, I guess, through MS Now. your article my son is a disabled adult, the Trump White House is has him in his sights and immediately latched on. So you were kind enough to respond to my my invite immediately and that was really cool for me. So ⁓ I'm excited to get what's it?

David M. Perry (: 00:24

It's just a Yeah.

I it's what I want to talk about. So I'm I any time someone says you wanna talk about this thing you care about so much and I know you get it, like I'm I'm in. So I'm I'm glad to be here.

Mark (: 00:29

Yeah, yeah.

Fantastic.

That's great. Yeah, I'm excited to talk about it because the things that are going on right now are just outrageous. And I just saw something else about autism clinics these wealthy investors are investing in these autism clinics and overcharging so the states are being bombarded with these incredible

bills, I guess, to be able to cover it. But I just saw that this morning, so I don't know that much about it. I don't know if you had heard anything about it.

David M. Perry (: 01:01

there was a great story in the nation. I I have heard something about it, but I haven't written about it because there was a story in the nation, boy, I just was looking it up in twenty twenty one, so that's been a minute, by a guy named John Summers, about private equity moving into autism treatment. And I have plenty to say about autism therapy. I have written about my problems with ABA. and I have I mean there's a whole other conversation to have.

Mark (: 01:13

wow.

David M. Perry (: 01:27

But I I think we can I hope you and I and any listeners can agree that when private equity is moving into something like autism treatment, they aren't doing it out of a sense of goodwill or attempt to better serve autistic Americans, but because they see a profit margin that they can exploit. And it it is happened it is happening all over the country and it is it is it is not how I think we should best support

Mark (: 01:27

Totally.

David M. Perry (: 01:55

our autistic children in America. Yeah. Right. Right.

Mark (: 01:57

Say the least, right?

everything's about the profit margin. And that's what we're gonna kinda talk about today too, because we're gonna talk about this article that you wrote and what's been going on, what the Trump administration wants to do with SSI. And so but before I start

Maybe you could just give the audience a little bit of background about who you are, 'cause I know you've been writing about this the disability world for like twenty years from what I understand, so you have quite a background. you just give us a little update.

David M. Perry (: 02:19

Yeah. Well, my son,

I think like a lot of us, my son is nineteen and so I've been writing about it in some ways for nineteen years, right? ⁓ and I've been writing about it publicly since maybe two thousand eight, so I guess that's not that's eighteen years or or a long long time ago now. ⁓ yeah, so I am a historian and I'm actually a historian of medieval Europe. That's

Mark (: 02:28

Okay.

Close. Close enough. Yeah.

David M. Perry (: 02:42

That used to be my day job, believe it or not, that that is a day job or can be, although I I'm not doing exactly that anymore, as a day job. I started you know, when my son was born in two thousand and seven, in in the f winter of two thousand seven, he was born and and quite quickly diagnosed with Down syndrome. And, you know, I think when you have these moments, a as I suspect you and everyone listening to this likely knows, it it

Mark (: 02:45

Well.

David M. Perry (: 03:08

when these these words show up, whenever there's a diagnostic word or or whatever that process is, it really shifts your worldview in a fairly profound way. And sometimes we shift quickly and sometimes we shift with great resistance and sometimes we think we figured it out and then in fact we haven't figured it out at all. and I can I can talk about the fact that my son does have Down syndrome, but he is also autistic and that was an age ten or eleven kind of understanding of what that looks like. So that was big

Actually didn't change anything 'cause all of his everything we was what we saw, but we had a new set of a new set of framework to th to think about it, which was ⁓ which was great. But you know, I when my son was born I did what I had been trained to do as as a historian, as someone who has dedicated his life to education, who believes in in the humanities, believes in the kind of the broadly based liberal arts and sciences education.

Mark (: 03:40

Establishment.

Mm-hmm.

David M. Perry (: 04:02

that he I want everyone to have and you know the and sciences part is is part of it. I I started reading books, and articles. Like I had this phrase down syndrome. I had a set of things that I believed about it, all of which were wrong. and 'cause I didn't know anything. And I but the great thing about being able to put together a reading list is that if you can recognize you don't know something and you can think about well what would it look like to know it and then you can execute that plan.

Mark (: 04:17

Yeah, why would you?

David M. Perry (: 04:29

then suddenly you're on a different stage. And I I you know, that's what grad school for me, like I have a PhD in history, it trained me in a lot of things. One of them was to say, huh, I don't understand this. How could I understand this? Okay, now I've done the reading and maybe I understand it. And and that that's so I I applied that to my parenting, not because I wanted to write about it so much, but because I needed to understand for my own sake and for my family's sake and to to and and it quite quickly, as again everyone

listening knows the combination of things, sort of cultural, artistic, representational questions, issues of language and and ideas around disability, but also the specifics of state, federal, county, school district government policies. I mean,

you know, my son is in in a school district, so that's one kind of government. He is on Medicaid, and that is a federal program going through a state agency and administered by the county, right? All of these different i when he if he did parks and rec, that would be through the town I'm in, right? All of the different levels of government

Mark (: 05:19

say it, yeah.

David M. Perry (: 05:37

We're all tangled up in them, all of us. But like his are specific programs I can point to. And I I just needed to understand what that looked like. And then as I understood what it looked like, I thought there might be some ways I could do some writing and some teaching. and I've been doing that ever since.

Mark (: 05:51

Mm-hmm.

Yeah, that's great. I've I've experienced so many different types of parent in their approach to dealing with their child and and the system. And

how a lot of parents back when I was teaching really were just kind of going along with whatever the school prescribed for their child and whatever the rules were, they went along with it. they weren't challenging it or questioning it as much. And I, applaud you and I and I encourage parents always to ask the questions too. And it's the intimidation factor too is is a big part of that, I think because you feel like, you know, you shouldn't be questioning the authorities who know best.

and the authorities don't always know best. You know your child best. And often then what happens is your child gets underserved because you're not getting the s proper services that you need. Did you come across those experiences when you were dealing with school schools and and your child going through it? Yeah.

David M. Perry (: 06:41

Yeah, of of course. and

you know, the thing about Nico is that he is the kid that people get into special ed to work with. By which I mean his needs are extremely obvious. He is nonverbal. He has low muscle tone. he you know, that that the way the the kinds of it's

Easily diagnosed, right? There are there are people with disabilities where you know there's there's needs, but it's hard to know what they are, where they come from or what's going on. That's difficult. Nico's really obvious. He r really likes to be he loves people, he's incredibly social. people people just fall in love with him. and I have written extensively about the negative impact of positive stereotypes around disability. Things like treating people like my son as l as lifelong children.

you know, when you see someone in their thirties being referred to as childlike. Well that's it's a problem. I I wrote a manifesto against the use of the word cute, as as sort of this dominant word in the Down syndrome. But my son is cute. he people fall in love with him. He is the he is the he's just this incredible human being that is a delight to work with. And so we've never had a problem where people didn't want to be around him and work with him. The question was always where are we where are the the boundaries and where can they be pushed? And

Mark (: 07:45

Yeah.

David M. Perry (: 07:59

And a lot of the times when we really hit obstacles, it was about lack of communication between and more incl you know, the the mainstream classroom teacher and his special ed, therapists and teacher and and, you know, not they didn't talk to each other every week so there wasn't communication about what was going on there and and you know, sometimes we handled it all internally and sometimes when things got bad, I wrote about it in the Washington Post and then the print

And and then the principal called me. And am I you know that's that's right. But but I always I always

Mark (: 08:27

Not the most common thing, but you had the opportunity.

David M. Perry (: 08:30

feel like if someone with the advantages that I have and that my wife has, she's a scientist, if we're and and a and with a a child who in some ways is very easy to work with, because he is a delight, ⁓ right?

Mark (: 08:46

Yeah, right. Right.

It's congenial. Yeah.

David M. Perry (: 08:48

Not not everyone

is congenial. Those kids deserve a hundred percent deserve every every service they they they're eligible for. But my kid is a delight and I know maybe every parent says that, but it's just true. and he is a delight. Yeah, yeah. Yeah. So so like you know, if we're having these problems with all of our resources and all of the sort of the in some ways ease of the what we need, I just always think, well what is what are the problems other people are having and how can I make how can I

Mark (: 08:59

Yeah. I know what you're talking about. I mean I know what you're talking about.

David M. Perry (: 09:17

both build changes within my schools within whatever school system my son is in, but also more broadly by writing about it in public. You know, and again, one of one of the solutions, a major solution, this was in second grade, was that the special ed teacher and the classroom teacher needed to have more regular meetings. And not even long meetings. That cost so that's a zero dollar solution, right? That is w

Mark (: 09:26

I mean what a great app.

David M. Perry (: 09:40

No money, no extra staff, they just needed to talk to each other sometimes. And you know, that was a good day. I I like to think that that the next year that second grade worked better for the next set of kids because they're 'cause the principal had implemented a more regular discussion among among the team. And so so that was the kind of thing I tried to do.

Mark (: 09:44

Yeah.

Yeah.

I love that. it worked every once in a while with in my school, but it's something that I certainly encourage parents to, really stress with the staff that you want to be part of the team, you want them to be teaming and communicating with each other in order to give all the best information you could possibly have to make decisions. 'Cause now you're at like nineteen years old, so you're facing this you got two more years, right? But you still now what's gonna happen after that? So it's a whole other podcast episode.

David M. Perry (: 10:18

Yeah. Yeah.

Mark (: 10:24

There's so much we could talk about. I'm gonna have you on every week and we could probably talk.

David M. Perry (: 10:27

Yeah, that's

that's that is that is the next the next journey. But but I also have learned when my son was born, and the doctors did what the doctors are trained to do is they gave us a list of sort of risk factors, right? He has Down syndrome, here are the things that that could mean. It was a long list. None of which were relevant to him at that moment.

Mark (: 10:32

Yeah.

David M. Perry (: 10:49

And you know, doctors that's what they give you a diagnosis and they tell you everything. But I you know, you do have to think a little long term, but also you really like what's happening now? What are we gonna do now? you know, I can't worry about you know, I c I when he was born I didn't need to worry about him being bullied in high school. but that was something people brought up and yeah

Mark (: 11:09

Right, right, right.

David M. Perry (: 11:10

'Cause that was their their mindset, they hear down syndrome, they think about their own experiences, they think about the bullying of of of disabled kids when they were growing up. Right. But also like like he was one at the time. I don't care. Like high school's just not I we have a lot of other concerns happening right now, right? And so s similarly, like, yeah, he's gonna be twenty two and then that's gonna be a whole new set of things and and we are thinking about it and looking towards it.

Mark (: 11:18

And then they and then they project it onto everybody else.

I got stuff. I gotta change some diaper right now.

David M. Perry (: 11:38

But really I'm focused on can we get him on SSI now? what is changing with Medicaid specifically in Minnesota, and with the various threats to pull funding from the federal government. What is that gonna mean for us now? 'Cause we're really dependent on certain kinds of Medicaid supports. like there's too much to to Yeah, yeah.

Mark (: 11:58

On the plate right now, for

sure. Yeah. Well it's a great transition to what we wanted to talk about today. we wanna talk about what's going on with SSI changes and this is what you wrote about. So do you wanna kinda give the premise of your article and then we can dive into it from there?

David M. Perry (: 12:10

So This was the one that was the tr

Mark (: 12:12

One

my son is disabled adult and Trump White House has him in its sights. talking about how families may be charged like having a bedroom is looked at as income, The most recent one, correct. Okay. Okay. Awesome.

David M. Perry (: 12:23

I love to talk, love to talk about that.

So right now the Trump White House is planning, they have announced that they're going to change a couple of things. They're gonna change and this comes out of a pro-publica study that they want to change some things based on how you count poverty. So in the past, if you got food stamps, there were sort of assumptions

Mark (: 12:27

There's a thing called editing, so it's fine.

David M. Perry (: 12:51

that you would be eligible for other income-based programs. and so that removed that's right. Yeah. And so it removed a a bureaucratic hurdle or what some scholars I like to call administrative burdens, so that every time in a social program you implement any kind of bureaucratic step

Mark (: 12:55

Right. Because it made sense that if you needed Snap then you weren't equipped necessarily.

David M. Perry (: 13:13

A certain number of people won't complete it and will be dropped out of the program. And I a certain number of people who are otherwise eligible won't complete and be dropped out of the program. This is sometimes done in good faith by people who really just want to make sure that, you know, they're testing for the means appropriately. but it often it is done by people who fundamentally don't believe in social welfare, government-funded social welfare. And

But they also know that politically saying, well, we're gonna kick these poor kids off Medicaid is bad politics. So instead they say, well, we're very concerned about fraud. We're gonna put in this these new bureaucratic steps. And and they know if they've done any reading, and I I really think that the people in this iteration of the Trump administration, in fact, are quite savvy about this in ways that some of the people in the last Trump administration were not.

that they are really quite savvy about it. They know that it's a way of of pulling back from supporting people without having to go through the the politics of telling people, hey, this is what we're cutting. They they don't they don't want to tell they don't want to tell people. The second thing is that if you

Mark (: 14:19

cutting right we're not cutting benefits right

David M. Perry (: 14:24

SSI isn't a lot of money. And the administration is proposing to deduct the value of a bedroom from that small amount of money. So my son is 19 and lives directly above the room I'm in right now. He's at school right now, but he literally right above there. he has lived there since we moved here in 2017. But technically, if this rule goes through

they could give him less money per month because he is living up there rather than living in group housing somewhere else. ⁓

Mark (: 14:54

Right,

right. So you're being charged for the room as if it's ⁓ like an apartment income, they're taking that money away. Right.

David M. Perry (: 14:57

Yeah. Yeah, as if it's as if it's it's a b a benefit.

there's so many things wrong with it. It's cer first of all, it's not really clear what that's going to mean specifically for families like mine, because they're making it confusing. I really I really don't know what it's going to mean. I don't know. and

Mark (: 15:11

Mm-hmm. Yeah.

David M. Perry (: 15:17

It is always better for people to live in their own homes, whether with their family members or not. I definitely think for my son and our relationship that it will be positive for him to live in this house or whatever house I live in for the foreseeable future. And that it's only the foreseeable future. At some point I will hopefully become older and more disabled and also need more support. That is hopefully because otherwise I will

not be around, right? Like like that is what happens in life, and so then there'll have to be a change. But it seems like the federal government wants to present a choice between not having your adult dependent child in my case in your home or having less money. And

Mark (: 15:44

Be here. Yeah.

David M. Perry (: 16:05

I don't know what's going on there so everyone who studies this knows it is cheaper for people to live

in their own homes, whether with family members or in in sort of small scale group housing or in independent apartments. There's a lot of different people with a lot of different needs and a lot of different models for housing. I have my biases about what I like more than others. But that's not that sort of doesn't matter in the scale I wrote just wrote another piece about like how eager I am to debate housing models, but we can't because the the bigger threats are just too big. So we can't like like

Mark (: 16:34

There's no

time for it.

David M. Perry (: 16:35

Just like I

want to talk about autism therapy and like different models of autism therapy, but I don't have time for that because they're just shutting them all down. ⁓ right? Like like who is ta like I can't do the nuanced important and the important nuanced conversations. So so what I want to say about this is that I think the agenda is, and I just think this, I cannot prove it, there's an assumption that people like me will keep their kids in

Mark (: 16:38

Yeah.

Right, exactly. They're not gonna be there.

David M. Perry (: 16:59

our homes because we want them here and just accept less money. Accept less financial support. ⁓ we'll just roll over, we will surrender, rather than say, no, you have to give us the same financial support and my move my son out of my house. I'm just not gonna do that. So if it's less money, it's less money and that's just what it is. But also it saves so much money in the system

Mark (: 17:06

You'll roll over because you want the night.

David M. Perry (: 17:24

overall to have your independent housing or housing in the context for my son within this home. We do have AIDS, but we don't need as much AIDS. He is gonna have much better health care with parents, at least I hope, me and my wife, I think, keep and and and you know his brother keeping an eye on him. we're you know, we're not gonna miss things that then add up to incredibly expensive health care. His long term health is likely to be better. He will eventually, as again with all of us, experience age related competition

complications, often to memory earlier with Down syndrome than than people without Down syndrome. but that's likely to happen later. It's gonna save enormous amounts of money, even just in our family and vast amounts in aggregate, to continue to support people living in more independent, more community based, home based, in our case, living. But they don't care about that. They think they can just cut the program right now.

Mark (: 18:20

and it's so it's so short sighted 'cause they oftentimes shoot themselves in the foot because they they do these things, they kind of flood the zone, confuse people, people don't know what to do, they don't know what they qualify for, and then they get away with it. But sometimes, like you said, it would be less expensive to actually house your your son at home than the government is even recognizing, it seems. So

David M. Perry (: 18:41

Right. And it does seem like

maybe we can get around it because I could just charge him rent and then that money would still be part of my but like I like this is all Yeah, yeah. That's right. That's right. No, I'd have to pull it out of the SSI and then like could I give it back to him somehow? I don't know. I don't you I don't I really don't know. And again

Mark (: 18:50

But you're pulling you're pulling that out of the SSI, aren't you? Yeah.

He's got less money then.

David M. Perry (: 19:01

I have so many resources compared to most people that I I just can't imagine how confusing it is and th and scary it is for people. And there's this idea that if you make some kind of small mistake, you're gonna lose everything. And and it's it's it's very stressful. I had a period where s a a third party donor created a special needs trust for my child.

Which was a wonderful act of generosity, right? So there's a there's a trust. ⁓ it's great. The financial planner who was took that that those assets

Mark (: 19:27

Mm. Wow. That's beautiful.

David M. Perry (: 19:37

made a mistake and I can say legally made a mistake. There was ultimately six months or a year later a settlement just to make everything whole again, right? Made a mistake and associated with my son's ID and took a lot of profit in trans in moving money around. Not profit, profit, but you know, taxable. Mate made things that shouldn't have been taxable, taxable, and the IRS noticed. And suddenly I start getting these terrifying letters that's, you know, all block print.

from the state saying, your son has assets, he will lose all of his benefits if you can't prove something. And it was scary because I didn't understand. Now I know what had happened and that who had screwed up and everything has f been fixed for a couple years. But it was scary and I kept thinking, what if I didn't speak English? What if I was working and it was sent in the mail? Like what if I had moved? There was no phone call. There was no email. It was a to a P.O. box, right? Like like all of these systems

Mark (: 20:23

Exactly. Mm-hmm.

David M. Perry (: 20:33

are are difficult to navigate for people with the most resources, ⁓ and again, often by design, often intended to weed people out.

Mark (: 20:41

Right.

Exactly. The confusion's the reason behind it. And this way they don't have to come out and like you said and be like the evil we're we're cutting you. Well, you're cutting yourself because you don't understand what we're trying to what we're asking of you. And underserved populations, people who are uneducated that have kids, they don't know what to do. They're at such at such a disadvantage and

The inequality is so frustrating. I won't go into it. I I know you've probably seethed over these things too. when you when did you start to notice the confusion? Did you notice it throughout your experience with your son, the confusion that the system throws at you through the years?

David M. Perry (: 21:19

Yeah. You

know, the the thing that really I mean, yes, absolutely. I remember s when we moved to Minnesota. Minnesota we moved from Illinois to Minnesota in for many reasons, but one of them was our sense that the disability system would be better for Nico, particularly as he got older. And that is in fact true. But there was this moment in which first we got rejected for everything because someone put mild developmentally disabled on a piece of paper. and

You know, so now I so then I I'm I'm my job is to argue for severity. My job is to argue, no, this is bad. And it's just him. It's not bad. It's fine. But he has lots of needs and needs support for them. but but then once we sort of sorted that out, there are these two wonderful so dedicated women from the county, both women in different things, and they were sitting at my kitchen table and they were just like saying acronyms at each other.

And I was sitting there not understanding anything they were saying. we could do this thing, we could do that thing, we could do this thing, is he eligible for this? And each time it was an acronym. And I was thinking, Boy, I have to I've read a lot and I have no idea what they're talking about. What happens, you know, with again in in a situation where someone is less resourced? So so for sure

Mark (: 22:26

Mm. Yeah.

David M. Perry (: 22:32

There's just there's just a lot of it's a really complex program. The people who help you figure out those complexities tend to be way over taxed. There's never enough staff to give you the time that you need. enormous amounts of energy are poured in to sort of sort of checking in on you. So every year I have to prove that my son is still disabled and still has Down syndrome, and he does every year. ⁓ and

Mark (: 22:55

Yeah, every

year.

David M. Perry (: 22:56

And

obviously there are some kinds of conditions where you, in fact, might need to say, Hey, has this changed? Right? You've had an illness, you had something like that. But in fact, every year my son is going to have Down syndrome. ⁓ I just feel like they don't need to dedicate that hour a year, just an hour, and that but then also whatever paperwork's being done behind the scenes, so maybe it's actually four or five hours, plus the five or six hours that I have for filling out paperwork, and then times every kid in

Mark (: 23:07

Yeah.

Right.

David M. Perry (: 23:24

the state of Minnesota, right? That's actually a lot of person hours dedicated to proving that people with Down syndrome still have Down syndrome. That people with cerebral palsy, yep, still have cerebral palsy. right, like not all disabilities are lifelong, but a lot of them are and and you can tell, but those systems, those checks are built in. And so that that gets very stressful. And again, Minnesota's a good state. Our annual reauthorization form is about 20 pages.

Mark (: 23:30

Still adapt and yeah.

Some item.

Yeah.

David M. Perry (: 23:50

the last time I looked at Tennessees it was a hundred and one pages. So I mean I I mean it may have changed. This was some years ago, but like right Right, right. So like you know, it's

Mark (: 23:57

So how much would it have changed? Ninety-nine now? You know? And

it's the and it's the way that they're changing the paperwork too, right? They're they're making people fill out the same repetitive stuff, but then they change the paperwork too, and all of a sudden you have to prove more. so parents are at a loss. And so that's how they drop out of the system, right? That's how we get rid of them from the system. It's disgusting.

David M. Perry (: 24:16

Yeah. Yep. And it's true it's true

in education too, that you'll you'll get you'll be in the room as a parent with a team of incredibly dedicated professionals, a teacher, a bunch of therapists, someone from the school district, and often they are talking in a way that is incomprehensible to someone who is not a professional educator in that system. And they are not doing it

intentionally they're doing it because they have to produce a document that conforms to very specific norms. And and I understand that intellectually, but it does mean that I sat in rooms or in Zoom meetings later on that like I just I didn't really understand what they were talking about and I didn't understand the stakes of what we said here and what we said there and and things had to be talked about always in terms of deficits.

Right right from early intervention. I I remember we you know, our first early intervention meeting, we had had a year of all these therapists t praising our son and praising us and telling us how great everything was going, and then they sat in a room and talked about how terrible everything was going. So they could well, so they could write down he has these deficits. So they can Yeah. I a hundred percent intellectually understand, but also I want I do want people any educators listening to this, I want them to know

Mark (: 25:24

Well, right. It's the only way to keep in the system, right.

David M. Perry (: 25:34

It is emotionally difficult and it does not get less emotionally difficult to hear this person you love talked about in what is the worst possible way. When we signed up for sorry, I'm ranting a little bit, but when we signed up for Medicaid, when we finally got through the acronym tennis and figured out what he was eligible for, I went to a county meeting in which the person from the county bluntly said, You have to describe your child on their worst day in order to get maximum funding.

And I do not want to describe my child's worst day. I don't want to take his worst his worst moments over the course of a month and aggregate them into a single terrible day. Because that is like it is true. It is I but it is not I don't wanna I don't wanna write down things about my child that way. I don't wanna see him.

Mark (: 26:21

Yeah, and you don't want to define it, you want other people to define them that way either, right? Yeah. And you know, we as teachers, very similar. We we had to prove that there was regression, right? We had to prove it. So we always had I was always like, so do we want this child to succeed or we want this child to fail? You know, it's such a confusing thing even for the me, the person who was actually, you know, instructing the child and trying to help their child learn.

David M. Perry (: 26:23

That's right. That's right.

Mark (: 26:46

what were the limits and what was I supposed to stop doing and and push and not push, all those kind of things. And the teachers too at those meetings are they're bound, you know, they they can they can say just so much. I mean I've had decisions made with me in the room. I was the teacher, I knew the student best, but they were made by the administrators or the resource people that made decisions about this child's future, whether they stayed in our school or they went somewhere else, they got exposure to certain like to sign language, things like that. And so

It's very frustrating for teachers as well, no doubt. And I and teachers I give a lot of credit, they're overworked, underpaid, all those things. And I'm sure that they would want to be able to do like you said, they got they're there with the best intentions and I'm sure that they would want to do more if they could. Their hands are tied. So what do you do as a parent if you're having you said that the resources really aren't that great for families that really do struggle with this paperwork. Where do people turn?

Have you s looked into that?

David M. Perry (: 27:42

Yeah, I mean there are both state and non profit actors who are supposed to to help with this. every state has a disability legal center. I'm actually forgetting the the acronym, speaking of acronyms, but ⁓ you know, i i I know that in in Chic in sh in Chicago there was

Mark (: 27:55

Ha ha ha.

I'm good. I'm terrible with acronyms too, so

David M. Perry (: 28:03

There was Access Living, which is the sort of disability policy and legal support, but then there's a different group that was working specifically on partnering with parents around education. And that's true in most places, that there are nonprofit centers. Ever every state is supposed to have, like with feder federally funded at least to some extent, but that is, of course, in danger. But ⁓ you know, a disability some some kind of some kind of dis pro bono disability legal support.

Mark (: 28:25

I was gonna say that's gonna be cut. Yeah.

David M. Perry (: 28:32

they're all enormously understaffed and overworked. And then also, sort of parent and education support groups that that are supposed to connect as well there. and so there are non profit centers to do to help, but it's really limited what they can do. I mean in Minnesota we have

Mark (: 28:36

I would think,

David M. Perry (: 28:49

I I apparently apparently I can't remember any names right now. ⁓ well it's just it's just it's just ridiculous. PACE, which I don't know what PACER stands for as an acronym, but PACER is in Minnesota and works on disability policy and so you can contact them. And in fact when we had a real conflict with our school district during COVID

Mark (: 28:53

That's all right. You write a lot. It's a lot to remember.

David M. Perry (: 29:12

And we needed an advocate as we went through the whole process on our way towards hiring an attorney. PACER provided an advocate for us. Now, it was someone who we've known since my son was born. and my wife has known since they were teenagers. But still, she worked for PACER and that's h and and that's how we we connected with her and and and so on and so forth. So there are places they're easier to access in major cities, they are easier to access in

Mark (: 29:25

Okay. cool.

David M. Perry (: 29:37

wealthier states that have funded these things at higher levels. you know, I know people working in the San Francisco dis dreadf again, I don't know. I don't all these acronyms apparently is gonna be the theme of the day. ⁓ no normally when I'm writing I'm c I'm looking things up and typing them in but talking I don't I don't have it at hand. But every you know, these these resources are out there and people should look for them. when when parents can't or disabled

Mark (: 29:50

Yeah, no, it's good that that's okay.

David M. Perry (: 30:02

individuals contact me and ask for help, my first question is, okay, where are you? And then looking specifically in that place to try to connect them with people. because that's where you where you f no not yeah, not intellectually in your process or emotionally in your journey. Where in the world exactly are you right now? And then I point them towards towards these networks. But I I want I wanna I want to double back on one more thing though.

Mark (: 30:10

And your process.

yeah, where are you specifically geographically? Right.

Right. Right. Geographically.

Okay. And I would think I would think you go

back one.

David M. Perry (: 30:31

A lot of these networks date back to Kennedy era legislation, funding for them. I will be shocked if we reach twenty twenty nine without at least one major sort of cornerstone of disability support in this country being eroded in the way that abortion rights have been award eroded and voting rights have been eroded. ⁓

Mark (: 30:55

Mm-hmm.

David M. Perry (: 30:57

civil rights so you know, ra race race-based civil rights in education

Mark (: 30:57

Just another set of civil rights. Yeah. Yeah.

David M. Perry (: 31:01

and job and hiring have been eroded. And I just think everyone needs to be ready for I don't know if it will be, you know, pulling back on the ADA or if this anti five four lawsuit that is making its way through the courts, you know, it's a ridiculous lawsuit, but that doesn't mean that the Supreme Court won't say, ⁓ yeah, five four is unconstitutional. And and I bet a lot of people don't even know

Mark (: 31:20

Yeah.

David M. Perry (: 31:24

I mean, in education they know because there's literally five four plans. but I bet a lot of people don't know what that is. And even people who are in education and haven't really looked at what the five four plan means legally that it comes from this n night this one section of a nineteen seventy-three law that now is making it through the courts. or maybe it's the Olmsted decision that guarantees as much independent living and community inclusion as possible, and an and an interactive

accommodation process. I or maybe it's gonna be these various nonprofit support disability law centers or and it could be a lot of them. I I just don't expect to make them to twenty twenty nine intact as they have been.

Yeah. Yeah. I mean and what what we're losing right now is we're losing federal support. So the Office of Civil Rights, so if you're in education, the Office of Civil Rights and the Department of Education has been doing has been doing that work. That that was all moved to the Justice Department, I think. I it was gonna be. It's hard to know if things have actually been done. And and staff heavily reduced. So even if the two people there, however many it is, have the best will possible.

Mark (: 32:04

going, I I can't argue it. You know, you can't argue it.

Yes.

Education, yeah.

Mm-hmm. Well. Right.

David M. Perry (: 32:33

There's only a couple instead of there being twenty, right? It's a s everything is shrunk down. So that is that is a l that is lost. We've yeah. We've we've al yeah, we've already lost that. We can rebuild it, but we've already lost that. The question is are we gonna lose these legal precedents that have been sort of core pillars of of what we've been doing since the seventies and eighties. And and my guess is yes.

Mark (: 32:36

Mm.

Yeah, so many of the experts have been fired, like thousands. Yeah. Mm-hmm.

Right.

Yeah. I mean you think historically how far we've come, right? And the risk now well let you talk about it because I could talk about it, but I'd like to hear your perspective on it. Like the risks now of, okay, so I can't afford to have my child live at home, what are we saying then? We're setting ourselves back decades.

David M. Perry (: 33:04

Yeah, yeah.

And and at great cost. I mean, so the answer is then right. So big big institutions, I guess, is what they're is the other option. again, I I think the Trump administration assumes that no one will put them in a big institution but will just, you know, take less money and try to make ends meet. And and some people will be fine and other people will be homeless. ⁓ and and or dead, just to be really, really blunt about it. You know, I

Mark (: 33:34

Mm-hmm.

Yeah. And

and

David M. Perry (: 33:39

I don't get to talk about these things as much about as other topics and I really appreciate the opportunity. So if I'm going on a little bit, I hope you and your I hope you and your listeners will be will be patient with me. Yeah.

Mark (: 33:45

⁓ I'm happy to have you dude, this is like a this is a place to let you

also as a parent vent, you know. Go for it.

David M. Perry (: 33:54

We have

in this country, starting in the Kennedy administration really in the nineteen sixties, as problematic as many things were with the that family and what they were thinking of, but a lot of goodwill there, a lot of important legislation, building into both education and then the rehab acts in act in the in the 70s, heading of course into the ADA and related legislation in nineteen ninety.

And then a series of various kind of legislative or sorry, judicial processes and and Supreme Court decisions that that define what things mean in ever expanding ways. We really built in this country what I call a core truly bipartisan consensus around fundamentals of disability rights. And what I mean is that almost everyone in America

or you know certainly across a broad political spectrum, agreed that disabled kids should get an education. Disabled people should get housing, not just be thrown out into the streets. Disabled people ought to be able to work if there's a way to make it work. That we should have, you know, yeah, maybe ramps are good. Like you should be able to people should be able to get into to s especially public spaces, right? This this this very broad, generalized

consensus around disability rights with huge disagreements about like how it would be implemented, how it would be funded, what were the limitations, who qualified as disabled, all these other things we've been fighting about. But this real bipartisan consensus culminating in the ADA more more than anything else And I I just need Yeah. Yeah. I I just need people to understand that bipartisan consensus is dead. It is dead.

Mark (: 35:34

Right. Yeah, traditionally fairly an easy one to get behind.

David M. Perry (: 35:43

There is no bipartisan consensus around basic things like there should be special ed, there should be housing for disabled adults, that disabled people should have healthcare, you know, pup public health care through Medicaid. that if you could do a job with a reasonable accommodation the the job has the the respon they have to let you, they have to accommodate you. that you should be able to get into a store

Or, you know, hit a button and get closed captioning or whate whatever it is, right? That that these sort of fundamental, very baseline principles, they're gone. and you can you can tell they're gone because if you look in every instance of what has been going on this past year,

These are all being eroded s one by one. And they're be eroded by people who take delight in using disability related slurs. and I don't think that's incidental. that this delight from Donald Trump and his sons and Elon Musk and people in his movement and using the R word constantly is not incidental to their disdain for supporting disabled Americans from birth to death.

So that's my rant. But I can back it up with evidence. Like there's just a lot of evidence behind it.

Mark (: 36:54

⁓

Yeah, and I'm sure people will say, Well, do your research. I would have let you talk for twenty more minutes on that. I'm a thousand percent behind you. I I believe in the same things that you're you're talking about here. I'm as offended as you are by it. the lack of humanity by this present administration is

David M. Perry (: 37:15

We we won

on the R word. We won. I I wrote another piece for my local paper I've been writing, you know, in two thousand nine Special Olympics formed the spread the word to end the word, I think is what it was called. And by tw and by twenty you know, to working against the R word. By twenty by twenty nineteen it had been so successful they changed the mission statement to not focus on slurs, but sort of more broadly about disability representation and inclusion because

Mark (: 37:28

Mm. cool.

Yeah, right, right.

David M. Perry (: 37:43

that word had been pushed out of the public discourse and it is just back. It is back every day at the highest levels of power and trickling all the way down.

Mark (: 37:46

Right. That's bad.

Yeah. it's disgusting. is a it's historical, it's followed this individual through his life and now it's seems to have brought out the worst in humanity to be a part of that movement.

that is isolating certain section of our population as the the ones that are the deserving ones and everybody else is for you serve my purpose and then you're gone. I mean literally

David M. Perry (: 38:15

And conserv conservative

people with disabilities, conservative parents of disabled children in the Down syndrome community is a community that a parenting community it it edges right towards the American right, and that's that's because of abortion politics and that's a longer conversation and one I like to have really bluntly. but maybe not today, because it's a longer one. But it I I hope people will just understand that it tends to it

Mark (: 38:37

Yeah.

David M. Perry (: 38:41

It is a right leaning community. and people who think that they're immune, because of who they vote for are wrong. They will find out they're already finding out that they're wrong and and and it's not gonna get better.

Mark (: 38:53

Well that's when policies tend to or people start to change their mind or reconsider, you know, their positions on policies. unfortunately it takes that.

David M. Perry (: 38:56

I hope so.

Mark (: 39:01

getting rid of the Department of Education, cuts to Medicaid, all the things that are in this bill, this big ugly bill, the threat coming down the line, we still haven't even experienced the fallout of these things yet. And it's it's over on the precipice of all these things. And I don't know how aware people are or how much people are really paying attention. How would you I mean, for me, the parent connection is really important.

for parents to get together and it be a resource to each other as far as, if I'm more equipped to be able to handle this paperwork and take care of it, maybe I can help you and maybe we can get together and do that kind of thing where we can support each other. Have you ever looked into something like that in your research? ⁓ have you come across

David M. Perry (: 39:39

I mean abs the

these sort of parent groups are enormously important and it's it's really it's really critical. And I do think that

I do think that one challenge has been a lot of these parent groups have been rigorously apolitical. and the problem is is that the threat is political. So it it's a challenge. And and part of it is that they want to be apolitical for, you know, tax reasons that the the you know, the every state has a I probably every state, you know, the the Illinois Association of Down syndrome or the Minnesota, you know, Down syndrome society.

great organization doing amazing work. you know, they can't be partisan or they lose at least in theory they would lose nonprofit status. the problem is that the threats are partisan. or the biggest threats are partisan. ⁓ yeah. So so you know, in in online Down syndrome parent groups, often there are, you know, moderating rules like Facebook groups, no politics.

Mark (: 40:25

Well biggest threats, yeah. I mean there's a fairly d strong demarcation between the parties on that.

David M. Perry (: 40:39

But I don't know how you talk about SSI and housing without the politics of hey, the Trump administration has announced this policy. We don't know what it means, but maybe you should call your lawmaker, right? Like that's sh that's politics. you know, please give a comment against this outcome you know, this new policy that's been proposed. That's politics. I fundamentally believe it's impossible that

because of the way disability is politicized to have any disability communities, let alone certainly not parent communities, that are trying to be apolitical, even though I understand why people want

Mark (: 41:16

Yeah, that's a really great point. I just had something in

David M. Perry (: 41:19

And maybe it and

maybe it's just me. This is why I either leave or get kicked out of online parenting groups over the years 'cause I I mean it it hasn't happened only once. Let's just say let's just say that. So

Mark (: 41:28

Well

well, you know, it's fine. I mean, you know, I found myself when I did an episode on the big ugly bill,

This was informing people of what actually is on the horizon. This is not opinion. These are facts. This is what they're stating that what they want to do. And the criticism that came back from people, I didn't think this this was going to be politics on this site. I didn't join this for this reason. But I'm like, but it is, it's about you. This is this is important. You know, this it is politics. You you can't escape it. That was my my point to that too, as you're saying. You you can't escape it because it's policies, that are impacting the community. And it's not just personal.

personal beliefs this is actual fact. But a lot of people want to deny the fact and say, well that's made up. But they're not paying attention to the actual policies that are being put out and put them down in black and white that you can actually read with their signatures on it, you know?

David M. Perry (: 42:20

Yeah. Or they or they just believe

it won't actually happen. And I gotta tell ya, because in twenty eighteen, thanks ultimately to the the thumbs down from John McCain, the Medicaid cuts didn't pass. I actually thought we were gonna beat the Medicaid cuts again this time. and we didn't. we didn't. And that's what I mean, like things are significantly worse.

this time around. that the people who are making these policies are smarter about how government works and how people use government services and structurally working to to to strip away resources as as as best they can. And that they're doing it through not just legislation, but through rule making, through rulemaking they're not particularly publicizing until someone leaks it to a journalist, like these

these two SSI rules about SNAP and housing, right? Like that's not something that gets debated in Congress. That is an internal document changing how things are calculated in ways that will impact lives, but they would like they're eager to have the impact without the debate. They're trying to this is on purpose. It is the the people who are running who who are stripping away our supports are savvy. they're doing it on purpose.

Mark (: 43:39

Mm-hmm.

David M. Perry (: 43:40

And ⁓

Mark (: 43:41

Yeah.

David M. Perry (: 43:41

and people just have to accept that. And then if people still want to vote for candidates who are going to strip away their own resources, I can't stop that. But I hope that they understand that's what they're doing.

Mark (: 43:53

Do you have a bottom line opinion as to why they're making these choices that are hurting people?

David M. Perry (: 43:57

I have two and one is small and one is big. I mean s the the small is that there's a fundamental opp this is a small one. There's a fundamental opposition to federal programs supporting the public good, supporting broad social goods. And so in Project twenty twenty five you could find it throughout, and then a lot of it's been implemented, just finding ways to to cut back

federal expenditures that support public goods in every aspect. That's the small one, believe it or not. the the the big one is and this relates back to the R word and and people don't like it when I say this, but I think there's a real lack of understanding of the depths of both ableism but specifically eugenic thinking in the modern conservative movement. that there is a an idea

Mark (: 44:28

Yeah, it's pretty big.

David M. Perry (: 44:47

And and it is fundamental, as fundamental as anything else if you to how Trump talks about disability and has since the nineteen seventies. So like this is not just lately. but it it infuses a lot of the the ideas about who should be supported, who is fit, who is unfit, who is worthy, who is unworthy. It is tied up in both racism and sexism and classism and and and nationalism and any number of other things.

But we are in a kind of a a new eugenic moment. it is tied up in in the high-end tech world and their ideas about, you know, it's it's why Elon Musk has a hundred children, because he's trying to breed, you know, the good babies of the future. I don't know if he has a hundred children. He has dozens. He has dozens through sper through sperm donors, right? Like he has dozens. and when I start talking like this, I sound like a wild conspiracy theorist.

Mark (: 45:31

Got a lot.

David M. Perry (: 45:39

and I'm aware of that, but again, it's just

Mark (: 45:41

Yeah. No, it

David M. Perry (: 45:42

it is fundamental to understanding so many things that seem inexplicable. Like during COVID where like why would you just let this bad stuff happen? Well, because you believe in eugenics and so it so it's okay. you know, why would you do these things? Because i it it it it serves an explanatory function in in a lot of in a lot of cases. But

Mark (: 45:57

That's a really interesting one.

Mm.

David M. Perry (: 46:06

No

's written into their Project: 2025

Mark (: 46:29

Yeah, so it's hard.

Yeah, but that's the thing. It's like you can say I sound like a conspiracy theorist who's going off but it's there. You can't actually point to these things. It's not some made up thing like a pizza polar that's having, you know, things going on in a basement that doesn't exist because they don't have a basement. So the you know, these these kind of things that you make up. But this is literally real stuff. And so the problem is it gets infuriating and it makes it very difficult to contain. And so when you have the opportunity

David M. Perry (: 46:42

Right.

Ha ha.

Mark (: 47:00

And a platform to talk about it, it's like you know, you just want to get it all out. So I totally respect that and I appreciate it because

David M. Perry (: 47:06

And and I'm eager

I'm eager to talk about the myriad problems with how the left builds disability programs and and ableism on the left as well culturally, which is which is rampant. and when Governor Walls in Minnesota, who I generally support, suggested cutting back on Medicaid waiver funding in order to save money, I wrote about that in the paper. When he when he hired an AI firm to pre screen for

fraud. I wrote about that in the paper. I'm eager to punch left. I would like to spend so much more of my time also y punching left. It's just that the big threats are coming from a particular direction.

Mark (: 47:37

Yeah.

That's the thing. It's not that things aren't happening on the left and I love people who people all love to say both sides, both sides, but this is not an instance what we're talking about the topic that we're talking about today of both sides in it. This is literally one side that's making these decisions and people are gonna be getting s really screwed.

David M. Perry (: 48:00

And making them unilaterally

mostly in private conference rooms in DC rather than on the floor of the of the Senate.

Mark (: 48:07

Yeah, that's terrifying. It's such an abuse of power, rights, our constitution. Dave, thanks so much, man. you know, I would love to have you back on to talk about the left too. Let's talk about that stuff too, you know. ⁓ you know, equal time, man. I'll I'll have you on like once a month. Yeah, thank you, man. I really appreciate your time. I appreciate your passion and your perspective and I've I hope people will follow your writing and

David M. Perry (: 48:10

I think

Yeah, sure. Anytime. Anytime. Yeah.

Yeah, I'll come I'll come anytime. Right. Yep.

Mark (: 48:31

I just wish you all the best. And I I you know, I would love to hear about how your son's doing too and and and talk about that with you too. So let's catch back up. All right. All right, you too. Bye.

David M. Perry (: 48:37

You bet. Yep, please. Have a great one. Bye.