March 6, 2025 • 25 mins
With recent threats to Medicaid funding, we discuss why Medicaid is important to care in the United States, what it is and what cutting funds might mean.
Nicole Jorwic is the Chief of Campaigns and Advocacy at Caring Across Generations. She is a family caregiver, having a brother with significant disabilities, and watched her parents navigate care for her grandparents. These experiences led Nicole to passionately advocate for a better experience for everyone. She is not afraid to share her viewpoints and positions. More information about Nicole and Caring Across Generations is here: https://caringacross.org/about/team/
Learn more about the difference between Medicaid and Medicare here: https://www.hhs.gov/answers/medicare-and-medicaid/what-is-the-difference-between-medicare-
medicaid/index.html
Read the full story quoted from CNN: https://www.cnn.com/2025/02/26/politics/medicaid-proposed-cuts-what-matters/index.html
Read about the popularity of Medicaid here: https://www.kff.org/health-costs/poll-finding/kff-health-tracking-poll-public-weighs-health-care-spending-and-other-priorities-for-incoming-administration/
Find out what Medicaid is called in your state: https://www.healthcare.gov/medicaid-chip-program-names/
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
- “More than 72 million people have health insurance through Medicaid – that’s more than one in five Americans. It covers children, senior citizens, people with disabilities, parents and adults without dependents. In addition, more than 7.2 million children are enrolled in the Children’s Health Insurance Program, because their families’ incomes are too high to qualify for Medicaid.
- Medicaid provides health insurance for about two in five children and also covers about 40% of all births, according to KFF, a nonpartisan health policy research group. It also covers more than 60% of nursing home residents and nearly 30% of non-elderly adults with mental illness, as well as about one in three people with disabilities. Plus, it pays for substance abuse treatment.”-CNN
Nicole Jorwic is the Chief of Campaigns and Advocacy at Caring Across Generations. She is a family caregiver, having a brother with significant disabilities, and watched her parents navigate care for her grandparents. These experiences led Nicole to passionately advocate for a better experience for everyone. She is not afraid to share her viewpoints and positions. More information about Nicole and Caring Across Generations is here: https://caringacross.org/about/team/
Learn more about the difference between Medicaid and Medicare here: https://www.hhs.gov/answers/medicare-and-medicaid/what-is-the-difference-between-medicare-
medicaid/index.html
Read the full story quoted from CNN: https://www.cnn.com/2025/02/26/politics/medicaid-proposed-cuts-what-matters/index.html
Read about the popularity of Medicaid here: https://www.kff.org/health-costs/poll-finding/kff-health-tracking-poll-public-weighs-health-care-spending-and-other-priorities-for-incoming-administration/
Find out what Medicaid is called in your state: https://www.healthcare.gov/medicaid-chip-program-names/
Become a supporter of this podcast: https://www.spreaker.com/podcast/love-doesn-t-pay-the-bills--5692861/support.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
[Music]
(00:11):
Welcome to Love Doesn't Pay the Bills.
I'm Lisa Tschudi. I am a family caregiver.
With me today is Nicole Jordan.
She is the Chief of Campaigns and Advocacy at Caring Across Generations.
Nicole is a brilliant advocate.
If you have a caregiver herself, she has been on the podcast before.
I encourage you to go back and listen to that one.
(00:34):
Nicole is here to talk about recent challenges to Medicaid.
I would love to just jump right into that.
Sounds good. It's a timely topic.
Thank you so much. I'm so glad to be here.
Yes. Welcome Nicole.
What is the difference between Medicare and Medicaid?
(00:55):
That's a great question. Frankly, it's something that a lot of folks don't understand.
Unfortunately, a lot of family caregivers really learn the difference between Medicare and Medicaid
when they find out the things that Medicare doesn't cover.
Medicare is a program that is meant for individuals who are 65 years or older.
It provides health care services and a lot of those supports.
(01:17):
Medicaid can help older people, but it is also a low-income program.
It is really the only program outside of a very narrow home health benefit in Medicare
that covers long-term supports and services, aging and disability care, long-term care.
It's called a lot of different things, but when it comes to supports in the home and in the community
(01:41):
for long-term care, Medicaid is the main funder of that.
The biggest distinction between Medicare and Medicaid isn't just the populations that it serves,
but it's the type of services that it provides.
That's a really key point that this is really one of the few ways that people can access ongoing long-term.
(02:06):
They call it home and community-based supports in Medicaid for people that need help with activities of daily living on an ongoing basis.
It's super important for those reasons.
Let's talk a little bit about the scope of the size of Medicaid.
(02:28):
I read that it is, and I will put links in the show notes.
It's more than one in five Americans.
This is every single audience member or somebody they love, if not themselves.
It's a lot of people.
Everyone will have somebody they love impacted by Medicaid.
Absolutely. Medicaid is a massive program. It covers over between 70 and 80 million people.
(02:54):
It covers everyone from children all the way up to seniors and you're exactly right.
Everybody knows somebody who's supported by Medicaid, even if they don't realize that they're supported by Medicaid.
How is Medicaid funded?
Medicaid is a differentiation between Medicare and Medicaid, which is that Medicare is completely federally funded, whereas Medicaid is funded through a state and federal partnership.
(03:27):
The way that it works in every state in this country, if a state government is investing a dollar into Medicaid, they know that it's going to get matched at a predetermined rate by the federal government.
It is funded with both state and federal dollars, which is why we're really anxious about the cuts that are being contemplated at the federal level.
(03:50):
It's that state and federal partnership in terms of funding and also in terms of, but when it comes to oversight, it's all at the state level.
It is implemented by the states with a share. Do you know what percentage comes from the federal government versus the state?
It varies state by state, but in every state, it's more than 50% is federal dollars, but it can be up to 75% that's federal dollars.
(04:17):
The average is around 60% of Medicaid spending is federal spending.
So if those federal funds are in fact reduced or eliminated entirely, states will have to decide how they're going to respond and there might be some wide variation.
Absolutely. There's already wide variation because of the state and federal partnership in terms of, you know, some folks have more opportunity.
(04:42):
There's waiting lists in some states and there's not in other states as an example.
The types of services are already different, but we have a real concern that that variation would only get worse if you have a have cuts into what's coming down the federal level because there is not a state in this country that can make up for the federal dollars.
(05:03):
That would be cut coming in Medicaid is an incredibly lean program, meaning it's an incredibly efficient program, which means that there's not a lot of saving on the edges.
So the only way that the states would be able to make up for these big cuts and federal funding would be cuts and services.
And that services that are really critical to a lot of folks that don't have a whole lot of other options. So why are cuts to Medicaid being discussed? Why this issue in the budget conversations right now on the federal level?
(05:43):
Why is this being discussed? It's being discussed as pay for is it's being discussed the cuts to Medicaid that were just past this week.
Well, past as a container for those cuts to Medicaid or past this week are being contemplated to pay for massive tax cuts to individual wealthy individuals and corporations.
(06:06):
Thank you for the point that in fact the house did pass that the budget resolution.
What are the next steps in that process?
The house passed the budget resolution which I've really been talking about as a container.
It's it's a container of which from which the the house of representatives will have to fill in with legislative text around how to actually get to some of the savings that are included in the resolution.
(06:35):
And when I say savings, I'm talking about massive Medicaid cuts. So the way that a that container works is that each committee in the house of representatives and it's a little confusing because of the name but the committee that oversees Medicaid funding in the house is energy and commerce.
And so that container includes instructions for that committee to cut at least in that at least is important at least $880 billion.
(07:02):
And so that is really concerning. Well, we can talk more about what folks can do. However, the next steps to answer your question is that there was another very different version of that container.
So now the Senate and the house of representatives need to get together and decide which which proposal they're going to go with. And so now we're kind of in a waiting game to see what happens.
(07:35):
We've we've heard some senators very clearly state that they're very concerned or even opposed to some of the cuts in Medicaid.
And so the next steps is what's what we call in DC conferencing between those two versions. And then again, they're still going to have to write the actual legislative text once they agree to the container.
So there's a lot of process still. This isn't happening super quick. We're going to take a break now. Please stay right here and we'll be right back.
(08:08):
Thank you for sticking around. We continue our conversation.
So into what can folks who are concerned about this issue, what can we do to push it in one direction or another?
Absolutely. So it's really important that folks that represent us, whether that's our representatives in the house of representatives or our senators in the Senate have an understanding of the full breath of the Medicaid program.
(08:36):
Obviously at caring across generations are focused on the aging and disability care components of what Medicaid pays for, but it does a lot more than that Medicaid also covers basic health insurance coverage for aging adults and disabled people, but also family caregivers who are so often pushed out of the workforce because of their caregiving responsibilities.
And also covers a lot of our direct care workers that are actually providing that aging and disability care. So the breath of Medicaid and the impact on folks with disabilities, aging adults and their family caregivers really can't be overstated.
(09:14):
So what we can do is keep stating it.
I can give an example. My own family is an example. My daughter is a young adult with disabilities that relies on Medicaid, home and community based services.
And at this time, her parents, my husband and myself and her sister are the caregivers, filling those positions.
(09:37):
We would lose income and we would also lose ability to potentially hire any outside caregivers, unless we could somehow afford it ourselves privately, which is completely unfeasible.
So my daughter, we would be back to unpaid caregiving, which I did for 18 years and it really harmed our whole family.
(09:58):
So, yeah, and there's huge numbers of families like me and across the country that are really relying on this program.
It's absolutely.
Yeah. As well as even non-family care workers who might be losing jobs and that's going to impact them as well.
(10:19):
Yeah, absolutely. And so exactly what you just did is exactly what people can be doing and should be doing, which is sharing the real life implications.
The real life benefits that you get. I also am a family caregiver as you mentioned in my intro. I have my brother Chris who I'm about to go see in a couple hours receives Medicaid, home and community based services in Illinois.
(10:40):
And we're really concerned about that loss of services for him.
And so that's what we need to be doing is sharing those stories and sharing the impact, the financial impact of not having that those access to those services.
I'm sure from the 18 years of caregiving that you did unpaid, that impacted your retirement and security, your financial future.
(11:03):
Those are the things that we need to be reminding people so that when those legislators, those representatives and those senators are taking the votes like they did this past Tuesday night, that they have the faces of the many people that would be impacted by Medicaid cuts on their mind.
That's what we can be doing right now. Absolutely. And I have been contacting my own congressional representatives and both Congress and Senate. The senators are already on board with preserving Medicaid, but my local congressman, I have been calling.
(11:41):
I think that, you know, for us to all discuss these stories is a is is super important. I agree. And I think that all of the listeners have their own, their own stories and their own ways that these kind of cuts will impact them.
And I think that the more we can share that, the better. So the biggest piece in my family's story isn't even it's it's both my own loss of income and what that might be.
(12:10):
And what that might mean for my eventual retirement or older age. But my daughter would really be very vulnerable if she did not have access to home and community based services.
I don't have family resources again. I was unpaid for 18 years. We don't have family resource to set her up for care to be provided for her out of out of any private resources. My daughter would be in a very, very vulnerable position for the entire rest of her life.
(12:47):
Yeah, absolutely vulnerable and also at like at risk of of going back in time in terms of services. So I can like what my real concern is and this is not something I talk a lot about publicly, but it's just real. And so it's an important time to be talking about it is that, you know, we have a long history in this country of institutionalizing when we're housing people with disabilities in large facility based care.
(13:11):
And unfortunately right now we have if there's major cuts to Medicaid, the first place they're going to come is to home and community based services because while they are not optional in the lives of people like your daughter and people like my brother, they are optional under the law. So they're going to be the first to get cut.
And what that means is that the only thing that will be left are institutions and because there are stones, institutions open. I'll just use my home state of Illinois as an example because Illinois still has seven seven in the year 2025 state funded institutions open for people with disabilities and 20,000 person waiting list for home and community based services.
(13:55):
If funding gets cut for Medicaid federal funding, there's not a state legislature that can make up those cuts. What that means is longer waiting lists or for folks that don't have family members who can step up at their own at the risk of their own financial well being.
There's also a real risk of institutionalization of folks that do not need to be institutionalized and that is something that we have to really be talking about and remain vigilant about because it is a much less cost effective form of care, but that's not the point. It's also not what people want.
(14:33):
We know that 90% of aging adults want to age in place, 95% of disabled people want to be in their homes and communities, but that is going to be in almost an impossibility if we face these major cuts to Medicaid.
Yeah. I have certainly heard that point being discussed elsewhere and you know the largest institution in Oregon was fair view and that only closed in 2000.
(14:59):
We've got a history of lots of abuse and neglect happening there.
So it may be a type of care, but it's not safe.
And a lot of really you can Google for example, fair view and learn more about that history that we have as a country.
(15:27):
That sort of institutional institutionalization does as well is separates families and it's harmful for the family as well.
The family members, there's a documentary called Where's Molly?
Well, just I mean it's it you will be very touched and crying if you watch this is talking about a person who their family was encouraged to place their daughter in a fair view and just never talk about her.
(16:02):
And the sibling, the brother is discussing the impact that had on him. These are issues that do impact everyone.
Yeah.
Yeah.
You have to go back to some kind of institutionalization like that particularly if they're some of the worst cases is very harmful.
(16:26):
It's very harmful and I frankly think that that's what's what's really frustrating about we've also heard a lot about in these conversations, including for members of the House of Representatives who voted for those draconian level cuts in the house that there's,
and they're not on quote unquote waste fraud in abuse in the Medicaid program but actually that's just outside of potentially because there's 75% of Medicaid is controlled by private insurance companies in the states that might be where there could be some waste and waste there but in all actuality it is a very lean program.
(17:05):
And that only a 3.9% of administrative cost which means the vast majority of funding is actually going to those services.
And also the that funding is going to pay for those workers a lot of people something that really hasn't been getting a lot of attention is just how much Medicaid is also a workforce program.
It pays the wages of direct care workers and so there's so many different ways that cuts would that cuts to the program would impact people and there's the ways for out of abuse actually when it especially when it comes to the abuse component of it to your point is is occurring when you have folks that are hidden away.
(17:46):
And unfortunately we've seen the results of that and including there's very recent in both Iowa and in Illinois cases of abuse in large scale institutions.
And I think that the more the fewer choices people have the more at risk they are of that kind of harm and abuse what home and community based services does to some extent is a guarantees that there are some at least a handful of various options.
(18:23):
And I think that people will choose what's safest and most appropriate for them when they have choices.
And we need to keep Medicaid strong so that families do have those choices because right now.
You know there's families now in the current system right that Medicaid actually isn't funded enough and we don't just have to guess that in 2021 Congress passed the American rescue plan acts that included short term funding to expand access to those home and community.
(18:52):
And we're going to do those home and community based services and all 50 states took that money that's because of the level of need of funding so why would we then five four years later be talking about cutting it.
Yeah it doesn't make a whole lot of sense.
So let's talk let's come back to the question of what we can do about this what steps we can take to come together and make these these points that we need to keep Medicaid.
(19:34):
So obviously folks should be you know following in on the list for carrying across generations that's one way that you can really make sure we know we just got the data that we had 2000 calls going calls and actions going to Congress on that on Tuesday when we had a day of action to protect Medicaid.
(19:55):
So just being connected in with groups like carrying across generations and others so that you know when is the time to really be putting that pressure on is really important also a lot of legislators folks should be they're going to be going home for different for recess during their spring breaks and the how the spring holidays.
(20:17):
And so it's important when they're home to try to get in and have those meetings again so that they're seeing those faces but if a meeting is too much another way to to local not local legislators with state level legislators read their local press there it's really a good idea to write letters to the editor about what folks are what you're seeing making sure that again if it's not you going to an office that they're seeing those faces and that they're seeing the impact.
(20:46):
Of the votes that they're taking and ultimately it's about putting that pressure on making those calls to Congress and also it doesn't just have to be Congress it's also making sure that your friends and family understand the supports that your family member relies on after both this election in the past election I come from a family just like everybody else that has a wide array of political leanings and political views.
(21:13):
But when you talk about the issues when you talk when I say this is the funding that supports Chris's services this is the funding that pays the woman down the street to be with him every couple of days that is it's harder to argue with it and when you're sharing it with your circle of support then they can call their legislators they can they can talk to people as well so it's not just if you know it might be some forever it's not reaching out to legislators isn't for everybody.
(21:42):
But everybody should know and that's another thing people should do is know what funds your services Medicaid is because of that state and federal partnership called different things in different states in Tennessee.
It's 10 care in Wisconsin. It's badger care in my home state of Illinois they they call it silas from and that's what they call group homes.
(22:06):
It's in and I cannot tell you how many conversations I have every week where people say oh no no I'm my stuff isn't funded by Medicaid and then I gently remind them that it is and so the first thing you can do is find out how Medicaid does impact your life and then start talking about it.
Yeah that's a very good point the fact that Medicaid is administered differently by the different states and and they used a lot of different terminology in Oregon we have the Oregon health plan.
(22:34):
So there's a it may it does make it very very difficult to have these conversations across not nationally.
Because there is so much different terminology in different ways that these things are implemented.
So it is it is very worth well to find out what your own state does and thank you very much Nicole I will have links in the show notes to help people get involved.
(23:03):
As well. Is there something we haven't touched on that you particularly want to add.
We touched on a lot great questions and great conversation. I think the one thing I just want to make sure folks really because I know that some people are discouraged because obviously the first vote has happened and it didn't go the way that we wanted.
I just want to end by emphasizing we have a lot of time to stop this and don't be discouraged I know I was sad and I was frustrated as well on that night and I still am fighting a little bit of that.
(23:36):
But we still can win and we've won before let me remind folks of that in 2017 very similar level similar levels of cuts were proposed to Medicaid.
We're able to stop that by doing all of the things that I just talked about and so we can do it again. Don't be discouraged and make sure that we keep fighting and sharing why Medicaid matters in the lives of us and those that we love.
(24:01):
Thank you so much. That's a really great point to end on. There is always hope.
On all of your representatives because they're all going to be talking to each other to get to that compromise.
And so the focus should be on the House and the Senate and also your state legislatures and your governors because they're going to be the ones that if these massive cuts come through that have to make the hard decisions and the cuts.
(24:30):
So you want to be encouraging them also to be reminding the representatives in Congress that they don't want to make those decisions.
Great. Thank you so much.
Thank you. It's a pleasure.
Thank you. I'm Lisa Tschudi and this is Love doesn't pay the bills.
[Music]
[Music]
(00:11):
Welcome to Love Doesn't Pay the Bills.
I'm Lisa Tschudi. I am a family caregiver.
With me today is Nicole Jordan.
She is the Chief of Campaigns and Advocacy at Caring Across Generations.
Nicole is a brilliant advocate.
If you have a caregiver herself, she has been on the podcast before.
I encourage you to go back and listen to that one.
(00:34):
Nicole is here to talk about recent challenges to Medicaid.
I would love to just jump right into that.
Sounds good. It's a timely topic.
Thank you so much. I'm so glad to be here.
Yes. Welcome Nicole.
What is the difference between Medicare and Medicaid?
(00:55):
That's a great question. Frankly, it's something that a lot of folks don't understand.
Unfortunately, a lot of family caregivers really learn the difference between Medicare and Medicaid
when they find out the things that Medicare doesn't cover.
Medicare is a program that is meant for individuals who are 65 years or older.
It provides health care services and a lot of those supports.
(01:17):
Medicaid can help older people, but it is also a low-income program.
It is really the only program outside of a very narrow home health benefit in Medicare
that covers long-term supports and services, aging and disability care, long-term care.
It's called a lot of different things, but when it comes to supports in the home and in the community
(01:41):
for long-term care, Medicaid is the main funder of that.
The biggest distinction between Medicare and Medicaid isn't just the populations that it serves,
but it's the type of services that it provides.
That's a really key point that this is really one of the few ways that people can access ongoing long-term.
(02:06):
They call it home and community-based supports in Medicaid for people that need help with activities of daily living on an ongoing basis.
It's super important for those reasons.
Let's talk a little bit about the scope of the size of Medicaid.
(02:28):
I read that it is, and I will put links in the show notes.
It's more than one in five Americans.
This is every single audience member or somebody they love, if not themselves.
It's a lot of people.
Everyone will have somebody they love impacted by Medicaid.
Absolutely. Medicaid is a massive program. It covers over between 70 and 80 million people.
(02:54):
It covers everyone from children all the way up to seniors and you're exactly right.
Everybody knows somebody who's supported by Medicaid, even if they don't realize that they're supported by Medicaid.
How is Medicaid funded?
Medicaid is a differentiation between Medicare and Medicaid, which is that Medicare is completely federally funded, whereas Medicaid is funded through a state and federal partnership.
(03:27):
The way that it works in every state in this country, if a state government is investing a dollar into Medicaid, they know that it's going to get matched at a predetermined rate by the federal government.
It is funded with both state and federal dollars, which is why we're really anxious about the cuts that are being contemplated at the federal level.
(03:50):
It's that state and federal partnership in terms of funding and also in terms of, but when it comes to oversight, it's all at the state level.
It is implemented by the states with a share. Do you know what percentage comes from the federal government versus the state?
It varies state by state, but in every state, it's more than 50% is federal dollars, but it can be up to 75% that's federal dollars.
(04:17):
The average is around 60% of Medicaid spending is federal spending.
So if those federal funds are in fact reduced or eliminated entirely, states will have to decide how they're going to respond and there might be some wide variation.
Absolutely. There's already wide variation because of the state and federal partnership in terms of, you know, some folks have more opportunity.
(04:42):
There's waiting lists in some states and there's not in other states as an example.
The types of services are already different, but we have a real concern that that variation would only get worse if you have a have cuts into what's coming down the federal level because there is not a state in this country that can make up for the federal dollars.
(05:03):
That would be cut coming in Medicaid is an incredibly lean program, meaning it's an incredibly efficient program, which means that there's not a lot of saving on the edges.
So the only way that the states would be able to make up for these big cuts and federal funding would be cuts and services.
And that services that are really critical to a lot of folks that don't have a whole lot of other options. So why are cuts to Medicaid being discussed? Why this issue in the budget conversations right now on the federal level?
(05:43):
Why is this being discussed? It's being discussed as pay for is it's being discussed the cuts to Medicaid that were just past this week.
Well, past as a container for those cuts to Medicaid or past this week are being contemplated to pay for massive tax cuts to individual wealthy individuals and corporations.
(06:06):
Thank you for the point that in fact the house did pass that the budget resolution.
What are the next steps in that process?
The house passed the budget resolution which I've really been talking about as a container.
It's it's a container of which from which the the house of representatives will have to fill in with legislative text around how to actually get to some of the savings that are included in the resolution.
(06:35):
And when I say savings, I'm talking about massive Medicaid cuts. So the way that a that container works is that each committee in the house of representatives and it's a little confusing because of the name but the committee that oversees Medicaid funding in the house is energy and commerce.
And so that container includes instructions for that committee to cut at least in that at least is important at least $880 billion.
(07:02):
And so that is really concerning. Well, we can talk more about what folks can do. However, the next steps to answer your question is that there was another very different version of that container.
So now the Senate and the house of representatives need to get together and decide which which proposal they're going to go with. And so now we're kind of in a waiting game to see what happens.
(07:35):
We've we've heard some senators very clearly state that they're very concerned or even opposed to some of the cuts in Medicaid.
And so the next steps is what's what we call in DC conferencing between those two versions. And then again, they're still going to have to write the actual legislative text once they agree to the container.
So there's a lot of process still. This isn't happening super quick. We're going to take a break now. Please stay right here and we'll be right back.
(08:08):
Thank you for sticking around. We continue our conversation.
So into what can folks who are concerned about this issue, what can we do to push it in one direction or another?
Absolutely. So it's really important that folks that represent us, whether that's our representatives in the house of representatives or our senators in the Senate have an understanding of the full breath of the Medicaid program.
(08:36):
Obviously at caring across generations are focused on the aging and disability care components of what Medicaid pays for, but it does a lot more than that Medicaid also covers basic health insurance coverage for aging adults and disabled people, but also family caregivers who are so often pushed out of the workforce because of their caregiving responsibilities.
And also covers a lot of our direct care workers that are actually providing that aging and disability care. So the breath of Medicaid and the impact on folks with disabilities, aging adults and their family caregivers really can't be overstated.
(09:14):
So what we can do is keep stating it.
I can give an example. My own family is an example. My daughter is a young adult with disabilities that relies on Medicaid, home and community based services.
And at this time, her parents, my husband and myself and her sister are the caregivers, filling those positions.
(09:37):
We would lose income and we would also lose ability to potentially hire any outside caregivers, unless we could somehow afford it ourselves privately, which is completely unfeasible.
So my daughter, we would be back to unpaid caregiving, which I did for 18 years and it really harmed our whole family.
(09:58):
So, yeah, and there's huge numbers of families like me and across the country that are really relying on this program.
It's absolutely.
Yeah. As well as even non-family care workers who might be losing jobs and that's going to impact them as well.
(10:19):
Yeah, absolutely. And so exactly what you just did is exactly what people can be doing and should be doing, which is sharing the real life implications.
The real life benefits that you get. I also am a family caregiver as you mentioned in my intro. I have my brother Chris who I'm about to go see in a couple hours receives Medicaid, home and community based services in Illinois.
(10:40):
And we're really concerned about that loss of services for him.
And so that's what we need to be doing is sharing those stories and sharing the impact, the financial impact of not having that those access to those services.
I'm sure from the 18 years of caregiving that you did unpaid, that impacted your retirement and security, your financial future.
(11:03):
Those are the things that we need to be reminding people so that when those legislators, those representatives and those senators are taking the votes like they did this past Tuesday night, that they have the faces of the many people that would be impacted by Medicaid cuts on their mind.
That's what we can be doing right now. Absolutely. And I have been contacting my own congressional representatives and both Congress and Senate. The senators are already on board with preserving Medicaid, but my local congressman, I have been calling.
(11:41):
I think that, you know, for us to all discuss these stories is a is is super important. I agree. And I think that all of the listeners have their own, their own stories and their own ways that these kind of cuts will impact them.
And I think that the more we can share that, the better. So the biggest piece in my family's story isn't even it's it's both my own loss of income and what that might be.
(12:10):
And what that might mean for my eventual retirement or older age. But my daughter would really be very vulnerable if she did not have access to home and community based services.
I don't have family resources again. I was unpaid for 18 years. We don't have family resource to set her up for care to be provided for her out of out of any private resources. My daughter would be in a very, very vulnerable position for the entire rest of her life.
(12:47):
Yeah, absolutely vulnerable and also at like at risk of of going back in time in terms of services. So I can like what my real concern is and this is not something I talk a lot about publicly, but it's just real. And so it's an important time to be talking about it is that, you know, we have a long history in this country of institutionalizing when we're housing people with disabilities in large facility based care.
(13:11):
And unfortunately right now we have if there's major cuts to Medicaid, the first place they're going to come is to home and community based services because while they are not optional in the lives of people like your daughter and people like my brother, they are optional under the law. So they're going to be the first to get cut.
And what that means is that the only thing that will be left are institutions and because there are stones, institutions open. I'll just use my home state of Illinois as an example because Illinois still has seven seven in the year 2025 state funded institutions open for people with disabilities and 20,000 person waiting list for home and community based services.
(13:55):
If funding gets cut for Medicaid federal funding, there's not a state legislature that can make up those cuts. What that means is longer waiting lists or for folks that don't have family members who can step up at their own at the risk of their own financial well being.
There's also a real risk of institutionalization of folks that do not need to be institutionalized and that is something that we have to really be talking about and remain vigilant about because it is a much less cost effective form of care, but that's not the point. It's also not what people want.
(14:33):
We know that 90% of aging adults want to age in place, 95% of disabled people want to be in their homes and communities, but that is going to be in almost an impossibility if we face these major cuts to Medicaid.
Yeah. I have certainly heard that point being discussed elsewhere and you know the largest institution in Oregon was fair view and that only closed in 2000.
(14:59):
We've got a history of lots of abuse and neglect happening there.
So it may be a type of care, but it's not safe.
And a lot of really you can Google for example, fair view and learn more about that history that we have as a country.
(15:27):
That sort of institutional institutionalization does as well is separates families and it's harmful for the family as well.
The family members, there's a documentary called Where's Molly?
Well, just I mean it's it you will be very touched and crying if you watch this is talking about a person who their family was encouraged to place their daughter in a fair view and just never talk about her.
(16:02):
And the sibling, the brother is discussing the impact that had on him. These are issues that do impact everyone.
Yeah.
Yeah.
You have to go back to some kind of institutionalization like that particularly if they're some of the worst cases is very harmful.
(16:26):
It's very harmful and I frankly think that that's what's what's really frustrating about we've also heard a lot about in these conversations, including for members of the House of Representatives who voted for those draconian level cuts in the house that there's,
and they're not on quote unquote waste fraud in abuse in the Medicaid program but actually that's just outside of potentially because there's 75% of Medicaid is controlled by private insurance companies in the states that might be where there could be some waste and waste there but in all actuality it is a very lean program.
(17:05):
And that only a 3.9% of administrative cost which means the vast majority of funding is actually going to those services.
And also the that funding is going to pay for those workers a lot of people something that really hasn't been getting a lot of attention is just how much Medicaid is also a workforce program.
It pays the wages of direct care workers and so there's so many different ways that cuts would that cuts to the program would impact people and there's the ways for out of abuse actually when it especially when it comes to the abuse component of it to your point is is occurring when you have folks that are hidden away.
(17:46):
And unfortunately we've seen the results of that and including there's very recent in both Iowa and in Illinois cases of abuse in large scale institutions.
And I think that the more the fewer choices people have the more at risk they are of that kind of harm and abuse what home and community based services does to some extent is a guarantees that there are some at least a handful of various options.
(18:23):
And I think that people will choose what's safest and most appropriate for them when they have choices.
And we need to keep Medicaid strong so that families do have those choices because right now.
You know there's families now in the current system right that Medicaid actually isn't funded enough and we don't just have to guess that in 2021 Congress passed the American rescue plan acts that included short term funding to expand access to those home and community.
(18:52):
And we're going to do those home and community based services and all 50 states took that money that's because of the level of need of funding so why would we then five four years later be talking about cutting it.
Yeah it doesn't make a whole lot of sense.
So let's talk let's come back to the question of what we can do about this what steps we can take to come together and make these these points that we need to keep Medicaid.
(19:34):
So obviously folks should be you know following in on the list for carrying across generations that's one way that you can really make sure we know we just got the data that we had 2000 calls going calls and actions going to Congress on that on Tuesday when we had a day of action to protect Medicaid.
(19:55):
So just being connected in with groups like carrying across generations and others so that you know when is the time to really be putting that pressure on is really important also a lot of legislators folks should be they're going to be going home for different for recess during their spring breaks and the how the spring holidays.
(20:17):
And so it's important when they're home to try to get in and have those meetings again so that they're seeing those faces but if a meeting is too much another way to to local not local legislators with state level legislators read their local press there it's really a good idea to write letters to the editor about what folks are what you're seeing making sure that again if it's not you going to an office that they're seeing those faces and that they're seeing the impact.
(20:46):
Of the votes that they're taking and ultimately it's about putting that pressure on making those calls to Congress and also it doesn't just have to be Congress it's also making sure that your friends and family understand the supports that your family member relies on after both this election in the past election I come from a family just like everybody else that has a wide array of political leanings and political views.
(21:13):
But when you talk about the issues when you talk when I say this is the funding that supports Chris's services this is the funding that pays the woman down the street to be with him every couple of days that is it's harder to argue with it and when you're sharing it with your circle of support then they can call their legislators they can they can talk to people as well so it's not just if you know it might be some forever it's not reaching out to legislators isn't for everybody.
(21:42):
But everybody should know and that's another thing people should do is know what funds your services Medicaid is because of that state and federal partnership called different things in different states in Tennessee.
It's 10 care in Wisconsin. It's badger care in my home state of Illinois they they call it silas from and that's what they call group homes.
(22:06):
It's in and I cannot tell you how many conversations I have every week where people say oh no no I'm my stuff isn't funded by Medicaid and then I gently remind them that it is and so the first thing you can do is find out how Medicaid does impact your life and then start talking about it.
Yeah that's a very good point the fact that Medicaid is administered differently by the different states and and they used a lot of different terminology in Oregon we have the Oregon health plan.
(22:34):
So there's a it may it does make it very very difficult to have these conversations across not nationally.
Because there is so much different terminology in different ways that these things are implemented.
So it is it is very worth well to find out what your own state does and thank you very much Nicole I will have links in the show notes to help people get involved.
(23:03):
As well. Is there something we haven't touched on that you particularly want to add.
We touched on a lot great questions and great conversation. I think the one thing I just want to make sure folks really because I know that some people are discouraged because obviously the first vote has happened and it didn't go the way that we wanted.
I just want to end by emphasizing we have a lot of time to stop this and don't be discouraged I know I was sad and I was frustrated as well on that night and I still am fighting a little bit of that.
(23:36):
But we still can win and we've won before let me remind folks of that in 2017 very similar level similar levels of cuts were proposed to Medicaid.
We're able to stop that by doing all of the things that I just talked about and so we can do it again. Don't be discouraged and make sure that we keep fighting and sharing why Medicaid matters in the lives of us and those that we love.
(24:01):
Thank you so much. That's a really great point to end on. There is always hope.
On all of your representatives because they're all going to be talking to each other to get to that compromise.
And so the focus should be on the House and the Senate and also your state legislatures and your governors because they're going to be the ones that if these massive cuts come through that have to make the hard decisions and the cuts.
(24:30):
So you want to be encouraging them also to be reminding the representatives in Congress that they don't want to make those decisions.
Great. Thank you so much.
Thank you. It's a pleasure.
Thank you. I'm Lisa Tschudi and this is Love doesn't pay the bills.
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