Nicole Jorwic
Appearances
Nobody Should Believe Me
Introducing: At Liberty
Not a ton to add. Just really leaning in on, you know, special needs. I have like an earworm for it. If I hear it, it makes my skin crawl because there actually isn't anything special about being disabled. As Zoe said, it's a high percentage of of the human experience for a lot of our community members.
Nobody Should Believe Me
Introducing: At Liberty
And the more that you get nervous about it or try to call it something else, the more it actually takes away from the reality of the existence of the person.
Nobody Should Believe Me
Introducing: At Liberty
Yeah, we really don't. And the reality for the vast majority of disabled people is that they're relying on either an incredibly underpaid workforce or unpaid family caregivers. The direct care workforce that is paid for via Medicaid, which I know we're going to talk about in a little bit,
Nobody Should Believe Me
Introducing: At Liberty
is historically has been underpaid, predominantly a workforce made up of women, predominantly women of color and immigrants, partially because of the makeup of the workforce and also the makeup of the people that are receiving care.
Nobody Should Believe Me
Introducing: At Liberty
So disabled people and aging adults who, as we've already discussed, historically have not been part of policy conversations or sometimes part of society as a whole, you have a very underpaid workforce. And then you have over 105 million people who are providing some type of care.
Nobody Should Believe Me
Introducing: At Liberty
So that's over 40% of the country that's providing some type of care because of the lack of government systems to do so. And that comes at a great financial cost. Per the National Partnership on Women and Families, $1 trillion of unpaid care is provided to the economy because of the lack of systems in place. That's impacting young people.
Nobody Should Believe Me
Introducing: At Liberty
That's impacting disabled people who are also acting as caregivers. And that's also, you've kind of been hearing more in this, especially during the presidential campaign about sandwich generation caregivers. Oftentimes you're thinking about parent of a young child and Maybe somebody who's also helping to care for their older adults, but it takes on a lot more different looks.
Nobody Should Believe Me
Introducing: At Liberty
It can look like me who is caring for a brother, an adult brother with disabilities and my aging grandparents. The longer the lifespan, the more sandwich generation caregivers that there are. And so it's not just a disability issue. It's a care issue when it comes to the systems that we need to create.
Nobody Should Believe Me
Introducing: At Liberty
And I can say this. I'm coming out of a two-week period of doing actual direct care myself for different generations of my family. I have my grandma who has Parkinson's. I was down taking care of her. Came directly to help my mom who had her knee replaced. did and stayed with her for a few days and then had my brother come and stay with my husband and I so that my mom could have a break.
Nobody Should Believe Me
Introducing: At Liberty
And let me tell you what, I did not have anything left to give. And I'm somebody who knows what caregiving is. So I knew I could name it, but that doesn't mean that it isn't hard, but there's so many people that can't even name it. I have sat in so many conversations with journalists or with consultants that we're working with where they'll say, yeah, I'm not really a caregiver though.
Nobody Should Believe Me
Introducing: At Liberty
I just like schedule all the appointments, take them to them, make sure that they have food. And I like watch the realization that they realize that they're a caregiver. And while it doesn't have to be an identity that everybody takes on, it actually is really important that we recognize it and also name it because it is hard. And it doesn't have to be that way if we had systems that were in place
Nobody Should Believe Me
Introducing: At Liberty
to actually care so that care was a choice, right? If every disabled person and every aging adult in this country had a system in place to get that home-based care that they needed when they need it, then family members can just be filling in the gaps instead of being the actual system.
Nobody Should Believe Me
Introducing: At Liberty
Well, right now, we know that 95% of disabled people want to stay in their homes and communities and 90% of older adults want to age in place. That is not what the funding structure looks like. So if I could wave my magic wand, I would at least make sure that the funding for long-term care in this country matched what people want.
Nobody Should Believe Me
Introducing: At Liberty
There have been decades, including a lot of work from the National Political Advocacy Department at ACLU, trying to make sure that we're working on rebalancing, getting more money into the home and community. But even in the best performing states, like the New Yorks and the Californias, it's barely maybe 60% of the funding that's going to that. So that would be one way that I would change it.
Nobody Should Believe Me
Introducing: At Liberty
And I could go into the whys, but I won't go into it. But that would be one way to quickly address the almost million people that are on waiting lists for these services.
Nobody Should Believe Me
Introducing: At Liberty
Definitely. And in long term care is so expensive, especially facility based care is exponentially more expensive than community based care. But then you need to have the housing units and you need to have the direct care worker support. So all of that has to come together. And yes, I empathize with all of those scenarios.
Nobody Should Believe Me
Introducing: At Liberty
It's something that I think these are the conversations that are happening at every kitchen table. But it's unfortunately not what we're seeing reflected in the policy conversations in D.C. right now.
Nobody Should Believe Me
Introducing: At Liberty
Well, that's that is the unfortunate reality is that so I get daily emails or phone calls from folks that will say like, oh, I'm not on Medicaid. I'm on in California. I have medical or IHS. Yes, that is Medicaid. And like the biggest thing and I've been Medicaid has been my like bread and butter work for the entirety of my career outside of when I practiced law for a little while.
Nobody Should Believe Me
Introducing: At Liberty
And the bane of my existence is the fact that nobody knows what it's called, even the people that are benefiting from it. And that is, as Zoe said, it's because it is this federal program that is administered by the states. State and federal dollars go into it.
Nobody Should Believe Me
Introducing: At Liberty
And Medicaid historically hadn't necessarily pulled well, but actually now pulls almost as well as Medicare, which I never thought I'd see the day, but I'm very happy. But I think it is because we have an understanding now and there is more of an understanding of of all of the different services that it covers. It is that essential health program for 72 million people.
Nobody Should Believe Me
Introducing: At Liberty
It does provide long term care, home and community based services for 10 million disabled adults and even more older adults. And it provides all half of all kids their health care. So it's this health care program. It's this long term care program. It's also a workforce program. it pays the wages of direct care workers.
Nobody Should Believe Me
Introducing: At Liberty
Also, one in four child care workers rely on Medicaid for their own health insurance coverage. So it's this web. Medicaid is a web of care that's really complicated. And I do, to Zoe's point, think sometimes that's by design. But frankly, I think that legislators are understanding that they might have
Nobody Should Believe Me
Introducing: At Liberty
around a little too much and they're about to find out because more people are... Is that the legal term? That's the legal term, yes. Because we are seeing the fact that they're proposing some of these big cuts and they're forgetting about the way that the disability community rose up in 2017 when they proposed some of these same things.
Nobody Should Believe Me
Introducing: At Liberty
I have the luck or unluck of dealing with Congress most days. And so what is currently being proposed is almost $900 billion in cuts to the Medicaid program. which frankly, that's like how much the country spent more than, but around how much they spend per year to cut the entire program. And what that would do is shift a ton of that responsibility, fiscal responsibility to the states
Nobody Should Believe Me
Introducing: At Liberty
There is not a state in the country that has the amount of money to make up for any cut of that size in federal funding. And so ultimately what that would do is completely rock the foundation of the Medicaid program. And right now they've passed step one. So one thing that's really important to know is they're trying to use this really wonky budget reconciliation process.
Nobody Should Believe Me
Introducing: At Liberty
And the reason that they're doing that is they only need a simple majority. So they only need in the Senate 51. and a simple majority in the House. And they've passed up one, which is a framework. So the House passed their version that does include that $880 billion in cuts.
Nobody Should Believe Me
Introducing: At Liberty
But for those of you who might not have been watching C-SPAN two weeks ago, they actually almost didn't because of Medicaid advocates, because people are being loud, because people understand that they're going to lose health insurance coverage. that their family member isn't going to get those home and community-based services anymore.
Nobody Should Believe Me
Introducing: At Liberty
But we need to be louder because now they have these warring two different bills. There's a Senate version that doesn't have the cuts and a House version that does. But now they have to actually write it. So President Trump and other people said, oh, no, or Speaker Johnson are saying, no, no, we're not going to touch Medicaid. But the Congressional Budget Office, which is a nonpartisan
Nobody Should Believe Me
Introducing: At Liberty
completely objective office of the government said that there is no way to get to that $880 billion number without cutting Medicaid by at least 500 billion. So now they actually have to write it down. So they can't hide from it before the next vote. So we have a lot of chances to make them really scared in the finding out phase of this fight.
Nobody Should Believe Me
Introducing: At Liberty
Luckily, there's a lot. I mean, obviously, there's a lot of outside advocacy groups, including the National Political Advocacy Department of ACLU, Caring Across Generations, Little Lobbyists, the Arc of the United States, a lot of. the AAPD, a lot of disability rights groups, but there's also a lot of legislators.
Nobody Should Believe Me
Introducing: At Liberty
And I will say I was very pleasantly surprised the day of that vote to have every member, a Democratic member of the Senate sent a letter saying no Medicaid cuts. You had Leader Jeffries in the House standing with every member saying no Medicaid cuts.
Nobody Should Believe Me
Introducing: At Liberty
You had even in the joint address that President Trump did to Congress last week, you had some of the protests, and I'm using air quotes, protest signs that said, save Medicaid. And then you also had Representative Greene, who was the only member who stood up. And one of the reasons he stood up and waved his cane as a proud disabled man was in protection of Medicaid.
Nobody Should Believe Me
Introducing: At Liberty
I just got excited about the green card. No, no, but that's the reality. And that's the same energy that came the last time that President Trump was in office in 2017. They proposed cuts that, frankly, almost were exactly the same size. It was around $900 billion that time. So they haven't learned their lesson.
Nobody Should Believe Me
Introducing: At Liberty
But at that time, and folks might remember the late Senator John McCain's thumbs down, which was when that terrible cut was saved. We were saved from that. And at that time, you had disabled people from different groups, including National Adapt, come and stage a die-in at Leader McConnell at the Times office.
Nobody Should Believe Me
Introducing: At Liberty
That is what you have disabled advocates like folks like Alice Wong and folks like Amani and everybody else putting their bodies on the line because this is literally a life and death issue for disabled people. Disabled people who have fought for decades to get out of institutions. There are still institutions open in over 35 states.
Nobody Should Believe Me
Introducing: At Liberty
And that's the funding shift, the magic wand thing I want to do, getting that money out of those institutions and into the community. But that's what you're going to have to see, and that's what we know that disability advocates and allies have lined up to fight against the Medicaid cuts this time around again.
Nobody Should Believe Me
Introducing: At Liberty
Yeah, I think the threats to 504 are really about protecting the rights of people to be part of their communities in all the different ways that Zoe said. And then you pair that with cuts to Medicaid that actually funds the services to keep people part of their communities and on the job. A lot of Medicaid funding goes to job coaching and work supports for disabled people.
Nobody Should Believe Me
Introducing: At Liberty
So it's really when you think about the Trump administration continuing and the attacks on 504, and then the administration and congressional attacks on Medicaid, it's a real double whammy.
Nobody Should Believe Me
Introducing: At Liberty
Well, internalized ableism is real. And there are a lot of people who don't want to think about themselves as a disabled person and then make really heinous policy decisions along those lines. But ultimately that I think is
Nobody Should Believe Me
Introducing: At Liberty
the role and the goal of those of us that are fighting against the Medicaid cuts and fighting against the attacks on 504 is that anybody at any point could become part of this community. And these are members of our community that we should be celebrating and supporting and not pushing back behind closed doors.
Nobody Should Believe Me
Introducing: At Liberty
Texas also does have the longest waiting list in the country and is the heaviest institutionalized per capita state in the country. So he's He's supporting attacks on 504 and also has an over 100,000 person waiting list for Medicaid home and community-based services. And all of the Republican members of Congress in Texas would support gutting the program.
Nobody Should Believe Me
Introducing: At Liberty
That's the double. Get all the sweetness in there. It's almost like a cup, a morning cupcake. I like that. Nicole Jorwick. I am the chief program officer for Caring Across Generations, lifelong disability advocate. And I think my favorite would be probably Banana Nut.
Nobody Should Believe Me
Introducing: At Liberty
That Medicaid might not be called Medicaid in your state, and you should know what it's called, and that's it.
Nobody Should Believe Me
Introducing: At Liberty
I would like them to reach out to their members of Congress and tell them to vote no on any bill that includes cuts to Medicaid.
Nobody Should Believe Me
Introducing: At Liberty
And even if you live in a state and are represented by all Democratic members who are currently standing, still make the calls and then make calls to your friends and family and make sure that they understand what Medicaid covers, who it supports, and that they should also make those same phone calls.
Nobody Should Believe Me
Introducing: At Liberty
Absolutely. And yes, absolutely. Because they need to know that they that as deals are being made and side conversations are happening, that Medicaid can't be on the table in any way, shape or form.
Nobody Should Believe Me
Introducing: At Liberty
What's giving me hope right now is that I think that the disability rights community, including folks at the ACLU and other allied organizations, are much better organized than we were in 2017 at this time, which means we're going to be able to make sure that the pressure is felt at every phase of this fight.
Nobody Should Believe Me
Introducing: At Liberty
And what's giving me hope is more of the aha moments that I'm seeing with folks understanding what Medicaid is, And also that they themselves are caregivers, including maybe today on this podcast. Because the more that we have those folks making those recognitions and seeing that this is something that touches their lives, it means we're going to win.
Nobody Should Believe Me
Introducing: At Liberty
Making things accessible for disabled people makes things accessible for everyone. So I just want to say that out loud. I think that it's obviously important to make sure that the physical spaces are literally accessible, making sure that when you're inviting someone into a space that they can actually get in.
Nobody Should Believe Me
Introducing: At Liberty
that there's ramps, elevators, all of those more, more maybe obvious things, but also making sure that materials are in plain language so that everyone can understand them, making sure that you have, um, cart and ASL interpretation, and also making sure that there's ways that aren't necessarily in person for, for folks to also engage having virtual options.
Nobody Should Believe Me
Introducing: At Liberty
You know, I think that we got really good at that post COVID, but for, for, for some disabled people, going in person isn't the way. So making sure that there's also multiple modalities for folks to engage is a really important thing for accessibility.
Nobody Should Believe Me
Introducing: At Liberty
Sure. So across all channels, Caring Across Generations, just at Caring Across Gen, G-E-N, I'm just at Nicole Jorwick. If you want to hear everything about Medicaid, I do, in fact, I think talk about it in my sleep, but I definitely talk about it online, including we do Medicaid Minute videos, breaking down some of the more complex pieces.
Nobody Should Believe Me
Introducing: At Liberty
So definitely follow us there at Caring Across Gen or at Nicole Jorwick.
Nobody Should Believe Me
Introducing: At Liberty
Thank you. It was a great conversation. Thank you so much.
Nobody Should Believe Me
Introducing: At Liberty
Yeah. And for me, disability, I've been really lucky that disability has been a through line thread in my life. I have a brother who has autism. He's 35. But actually, before he was even born, his name's Chris. I'm sure I'll talk about him a lot because he's also my favorite Medicaid recipient.
Nobody Should Believe Me
Introducing: At Liberty
But before he was even born, I was in the first included school district many decades ago in the first classroom in our school district where we had people with disabilities in our classroom, in our regular ed classroom. And so for me, the term disability integration and community integration is really something that I've been lucky to live at so many different phases of my life.
Nobody Should Believe Me
Introducing: At Liberty
And the term integration is based in the Latin root integrare, which means to make whole. And for me, every part of my existence wouldn't have been whole without my friends and relatives and colleagues with disabilities.
Nobody Should Believe Me
Introducing: At Liberty
Yeah, and it isn't always enough. And also part of why it does seem like it's so recent in time, and unfortunately it is, is because for so long, when you think about the history of the disability movement, I also am lucky to have learned a lot from people like Alice and others before me, is that people with disabilities were so often hidden, right? I'm not that old. I'm in my early 40s.
Nobody Should Believe Me
Introducing: At Liberty
And I was in the first included school district. Right. My brother is 35 and he was the first student with autism included in our school district. And that's a very recent history. And that's because so often for cultural reasons and just lack medical reasons and the medical industry is saying that, you know, people should go into institutions until the 70s and 80s.
Nobody Should Believe Me
Introducing: At Liberty
That's what parents were being told. So, so often people with disabilities were this unseen unheard at home if they were anywhere or warehouse and institutions. And that's part of why things like the ADA and Individuals with Disabilities Education Act really are relatively new in history because that integration piece is actually relatively new.