CODED: Genetics
CODED is a podcast brought to you by Genetic Support Foundation and hosted by Katie Stoll, MS, CGC and Dr. Stephanie Meredith. We explore the most pressing issues at the intersection of genetics, healthcare policy, and bioethics. CODED will be of interest to healthcare professionals, policy makers, and anyone interested in understanding how advances in genetic medicine are reshaping healthcare delivery and society at large.
CODED: Genetics
Medicaid and the Devastating Ripple Effect of Budget Cuts on People with Disabilities
The House just passed what President Trump calls the "Big Beautiful Bill," and its implications could be devastating for millions of Americans who depend on Medicare and Medicaid. As this massive budget reconciliation bill heads to the Senate, Katie and Stephanie break down how its complex provisions could trigger automatic cuts to these essential programs despite promises to protect them.
For people with disabilities, the stakes couldn't be higher. Many Americans don't realize that crucial supports like home and community-based service waivers are considered "optional" programs for states to fund - despite being lifelines that make community participation possible. When states face budget constraints from restricted federal matching funds, these services become vulnerable targets. Dr. Meredith shares her 17-year wait to secure services for her son with Down syndrome, illustrating the already overwhelming barriers families face to access and maintain these supports.
The podcast reveals a troubling historical context: institutional care remains the legal default for people with disabilities, with community-based options existing only as "waivers" from this outdated model. Despite being more humane and cost-effective, these critical services could face cuts while the bill simultaneously increases tax exemptions for the ultra-wealthy.
This episode serves as both an urgent call to action and an educational resource about how Medicaid waivers function. Listeners will gain clarity on the differences between Medicare and Medicaid, understand the bureaucratic gauntlet families navigate to access services, and learn concrete steps to advocate with their senators and governors before it's too late. The message is clear: society's treatment of its most vulnerable members reflects its true values, and now is the time to stand up for inclusion and support.
Call your senators today at 202-224-3121 to make your voice heard about this legislation that could impact millions of Americans with disabilities and their families.
CBO Letter about Medicare and PAYGO
Committee for a Responsible Federal Budget Analysis
Genetic Support Foundation: https://geneticsupportfoundation.org/
Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/
Greetings and welcome to the podcast. I'm Katie Stoll, the Executive Director at Genetic Support.
Speaker 2:Foundation and I'm Dr Stephanie Meredith, development Director at GSF and Director of our Lettercase National Center for Prenatal and Postnatal Resources. I'm also the mom of a 25-year-old son with Down syndrome. So just to give you a little bit of highlights about what we're doing over at GSF before we get started we have our DNA Dash coming up on May 31st, which is where we will be doing teams engaged in different activities around the country. Some people are doing 5Ks where they are walking slash running, we have people doing puzzle competitions, we have people roller skating, skateboarding, scootering, and all of the funds are being used to go toward our nonprofit organization so that we can help provide financial assistance for genetic counseling. So it's a great activity. We already have 58 people registered help provide financial assistance for genetic counseling. So it's a great activity. We already have 58 people registered and, if you would, like to get involved.
Speaker 1:we would love to have you. It's going to be a lot of fun. I'm looking forward to our first DNA Dash, and we should do it again next year.
Speaker 2:Yeah, so if you're too late when you hear this, join us next year.
Speaker 1:We'll do it again. We also have some meetings coming up that we'll be at in the next couple of weeks. First we'll be in Arizona for the American Academy of Developmental Medicine and Dentistry. That meeting is taking place June 5th through June 8th, and then we will be the next week at the Seattle Northwest Rare Disease Fair, June 12th and 13th. If you're attending either of these events, we hope you'll stop by and say hello to our GSF people that are there.
Speaker 2:That would be fantastic, and we will be speaking on the Thursday at the American Academy of Developmental Medicine and Dentistry Conference. We will be doing two sessions. One will be about the National Council on Disability Report on Heritable Human Genome Editing, and the other will be a panel where we'll be discussing some of the results from the PREPARE study we've been involved with and how to improve obstetric care for people with disabilities and make sure that they are included in the guidelines that are developed for that population. Another exciting thing we have going on is our book Welcoming a Newborn with Down Syndrome, which is used by organizations all over the country in their baskets. Welcoming Newborns with Down Syndrome is now available in the Kindle store and our goal in the next couple of months is also to make it available as an audio book in Audible. So lots of fun things there.
Speaker 1:That's great. Yeah, excited to see Genetic Support Foundation lettercase resources being made available in these new formats. We're also really excited to share a recent publication. Several members of our Genetic Support Foundation team co-authored a response to a recent international guideline published in Nature Endocrinology. That included recommendations that all parents of people with achondroplasia be presented with information about vasorotide, a medication that's been approved in recent years by the FDA to increase linear growth. It's a bit of a controversial topic and one we will be talking about more in depth on our next podcast, so I hope you'll join us for that. But today we decided we'd just jump in to talk kind of a part two about Medicaid being under threat. This is kind of an urgent and important issue to all of us and we wanted to really take this on today, yeah absolutely so.
Speaker 2:Today the House passed what President Trump has been calling the Big, beautiful Bill, which is a 1,000-page budget reconciliation bill. That really would be devastating for people with disabilities and seniors and also fiscal conservatives, and this is why Speaker Mike Johnson has really had such a tough time winning over both the budget hawks and the moderates in his own party to get the bill passed. Because if you're fiscally conservative, it adds an estimated $3.1 trillion to the deficit over 10 years. According to the Nonprofit Committee for a Responsible Federal Budget and that's a nonpartisan nonprofit organization this deficit will end up causing instability in the bond market and already has, in fact, which raises interest rates ultimately and reduces employment growth, and it's, you know, honestly hard enough to buy a house right now without raising the interest rates even more. And now the bill, now that it's been passed in the House, will move on to the Senate, where they can either pass the bill as is or make amendments, and if they make amendments, then the bill has to go to reconciliation between the House and Senate and then get signed or vetoed by the President. Think about that.
Speaker 2:I'm Just a Bill Schoolhouse Rocks cartoon that many of us who were born in the 70s and 80s watched pretty often. Specifically, the budget proposes $625 billion in health cuts over 10 years and the number of uninsured is expected to grow by 7.6 million. According to the Congressional Budget Office, about 10.3 million people are expected to lose Medicaid, but of those, 2.9 million are simply being dropped for duplicate coverage, like maybe they have coverage in two states or they have Medicare and Medicaid so effectively. 7.4 million people are expected to lose Medicaid over 10 years, based on the federal projections from the CBO.
Speaker 1:This seems surprising in some ways, I think, to many people who have been hearing that there have been these promises from our legislators that we wouldn't be seeing cuts to Medicare and Medicaid. So why do advocates for aging and disabled Americans think that these cuts are coming?
Speaker 2:I mean we have heard repeatedly from President Trump, from legislators, that there will be no cuts to Social Security, medicaid and Medicare, and even though the bill doesn't specifically say it will cut Medicare for seniors or Medicaid for people with disabilities, the devil is really in the details here and I think sometimes people get Medicare and Medicaid mixed up because there are some overlaps there. But Medicare generally, if you are retired, you know you're collecting social security. You're using usually Medicare. Also, if you have SSDI, which is social security disability income, then you would also be using Medicare and that means you've paid in long enough to social Security that you qualify for disability. That way Medicaid you can qualify for because maybe you're under a certain income threshold. But it's also the type of Medicaid that people with disabilities use, who were born with their disability often or they have a disability so significant that they need home and community-based services.
Speaker 2:So I'm going to talk a little bit about that, because this bill would raise the deficit by such a large amount. It would trigger reductions in Medicare, so the one for seniors mounting to about $490 billion over 10 years, as required by the statutory pay-as-you-go Act of 2010. And there's actually a letter from the Congressional Budget Office explaining exactly how that works. That we'll link to those cuts are in addition to the $625 billion in cuts already proposed for the health budget. That would profoundly impact people with disabilities on Medicaid. And the way the Pay-GO Act works is that it automatically triggers sequestration and cuts when you reach a certain deficit level, and they can require up to 4% in cuts to Medicare each year as long as that deficit exists.
Speaker 2:What ends up happening is the cuts in the Medicaid part of the bill. They come in the form of restricting the level of provider's taxes that states can charge and restrictions on matching federal funding percentages that the states often use that they get Okay. So if you're a state, you spend however many dollars on Medicaid, you get a matching percentage from the federal government. They're putting restrictions on that and often those percentages are determined by the need of the state. What is happening is that states often use those taxes those provider taxes, the matching funds from the federal government to cover their Medicaid budget shortfalls during tough times, and if they lose the ability to do that, then they have to either increase their income somewhere else through taxes or decrease spending. And the most you know, the things they're usually going to cut are the optional things.
Speaker 1:Yeah, it looks like in the big beautiful bill there's also some efforts to create more friction and barriers and enrollment and, you know, maintaining access, which might reduce spending for Medicaid just based on less people being really able to jump through the hoops to access it, and probably that could, I think, hurt the most vulnerable people who might have trouble navigating all of that. Also, it appears that there's some efforts to add some like ability to require some copay or cost share for Medicaid recipients. That would incur some cost for people who are at federal poverty guidelines, which is, for a single person, around $15,000 a year right now. So you know, co-pays or cost shares could make it very difficult to access health care. I think with that as well, and also, Stephanie, we're looking at this as the pay-as-you-go act. Just with the projected deficit that would trigger these Medicare reductions, it looks like that would be projected to begin around 2027. That's coming up pretty soon and some of these proposed cuts to Medicaid would happen much sooner.
Speaker 2:Yeah, that estimate of $490 billion being cut over 10 years is between the years of 2027 and 2034. So it would happen pretty fast and it's actually required by that statute. There's not a lot of a way around it.
Speaker 1:Can you explain a bit about how people with disabilities currently are able to receive Medicaid or Medicare?
Speaker 2:Yeah, and you know, I think most Americans just assume that people with significant disabilities automatically get the help they need, ranging from health care to support, staff day programs and medical equipment, staff day programs and medical equipment. So I think most people would be shocked to know that a lot of these services fall under the type of Medicaid that's optional for states to fund. It's important to remember that every state is different in how they administer Medicaid programs, because it's one of those things where they receive federal funds and there are federal guidelines as to how you're supposed to administer certain parts of it. But there's also some flexibility where they can get these waivers to do it in different ways, and so, for example, if you qualify for supplemental security income here in Georgia, you automatically get the health care type of Medicaid because you are under a certain income threshold. And if you are in North Dakota though I've learned from other advocate friends there those are not coupled together there. But then there's a different type of Medicaid that people with disabilities often need, which is a home and community-based services waiver or a Katie Beckett Medicaid waiver, and these are called by different names in different states. So that's also what's hard, because people don't necessarily know that what I, you know the home and community-based service waiver you have in Georgia is the same as the Michelle P waiver in Kentucky, so they can have those different names. But generally the Katie Beckett Medicaid waiver, for example, covers children with significant disabilities whose parents are above the poverty threshold but they still don't earn enough money to pay for all the services that child would need.
Speaker 2:A home and community-based services waiver is what covers things like day programs for people with significant disabilities. It will cover community support for people who need support providers to help them do daily living. It'll cover medical equipment, some of those really important components of people with disabilities being able to live in their community. But all of those waivers so the home, community-based Services waiver, katie Beckett waiver those are optional for states to fund. They are not required to do it. In contrast, they are required, for example, to pay for Medicaid, the health care Medicaid for people under certain income thresholds and also, for example, children in foster care, which is really I mean, those are really important populations to care for. But these Medicaid waivers that are so central to people with disabilities are optional and these are the most vulnerable citizens in our communities and it really requires we have to submit mountains of paperwork to document the extent of their disability.
Speaker 2:I will tell you, my son has one of these HCBS waivers.
Speaker 2:We were on a waiting list for 17 years to get it.
Speaker 2:It takes a very long time, georgia.
Speaker 2:Typically you will get funded when they turn 22 because they age out of the school system, and then there's this recognition that they've kind of hit a cliff where they're going to need extra supports.
Speaker 2:The family is going to need extra supports because you need to either have them be able to go to a day program or to have direct support staff so that family members can continue working and doing the things they need to do and so their loved one with a disability can be out in the community and getting the services that they need. And some people like I have a friend, lindsay, who would not mind if I share her story that she's got two sons with very significant disabilities who both attend a day program and she provides their care for 16 hours a day and it's nursing level type care and she gets you know the eight hours a day when they're at the day program five days a week are the times when she's able to do the other aspects of her life that are needed for her family and get some rest. So it's really critical for families and yet these are considered optional for states to fund.
Speaker 1:So, with them being optional, I got a couple of questions from you describing that the amounts of paperwork you had to do for Andy and the waiting list. Is that something that's like ongoing, like you're having to reapply or, once you're a recipient of these waivers, is it something that will continue ongoing until you unenroll? Or is it just something that you have to continuously apply for? And if they're optional, is a vulnerable area that Medicaid state Medicaid programs might be looking to cut?
Speaker 2:Well, she could have seen my face for all the people listening to the podcast when Katie asked the question about whether this requires continuous advocacy, because she really cut to the core of what's so exhausting about it. And I will say to the first question do we have to continue reapplying and redetermination? Absolutely so with the Katie Beckett Medicaid waiver. When Andy had that when he was under 18, the Katie Beckett Medicaid waiver covered things like speech therapy, occupational therapy, physical therapy that our regular insurance didn't cover and for some of my friends that would cover medical equipment. Andy didn't need that, but it'll cover some of those extra things even if you have a primary insurance policy. Okay, and when we applied you have to submit literally like 90 pages. We would submit every single year. We would have to. I mean he has Down syndrome. It is an obvious disability that comes with a level of intellectual disability that also comes with a level of recommended therapies by American Academy of Pediatrics. But we would have to submit his IQ testing. We would have to submit his individualized education plan for school, his therapy notes. We would have to submit a letter from his doctor and, interestingly enough, we would also have to get a note from his doctor saying he would qualify for institutionalized care if we did not provide it for him. And that's a hard thing to even sign as a parent, because I would never, never, put him in an institution, like I would die first. But at the same time, that's the level that they are expecting.
Speaker 2:In order to fund these waivers, and then for his adult waiver, we had to qualify for SSI supplemental security income and you have to go through again submitting IQ tests, having, you know, a needs assessment where they talk about all of the things you're, unfortunately, your child can't do, which is hard because, again, I've spent a lifetime trying to help him be as independent and as awesome as he is. But we have to, you know, be really honest about what his needs are, and he does require a level of support that you wouldn't expect from another 25 year old, where you know we have to give him transportation anywhere he goes, right. So we have to do that. We have, as part of it, we have a support coordinator who's assigned to us, who has to come evaluate us every I think it's every quarter maybe, or every couple of months. It seems like and you know she's a lovely human, I actually like her a whole lot.
Speaker 2:But you know we're constantly being assessed to make sure that he is truly disabled, that he truly qualifies for these services. And I mean, quite frankly, I think if you really wanted to reduce administrative burden, you could only have us reapply when it's a really obvious disability, like that Every five years, every 10 years. Then you're reducing paperwork and you're reducing staff costs and doing all that stuff. But I also do see value absolutely in the support coordinators, because you want to make sure that people also aren't being mistreated, because there is a high rate of abuse for significantly disabled people. So I don't have a problem with that. But I think, as far as the redetermination, there's probably some real wasted funds there.
Speaker 1:I mean it's such a process right.
Speaker 2:It's hard to imagine that there's a lot of people that are trying to game that system. Look, I'm a doctor in public health and I truly do not know how you would game the system to be able to prove that, because you have to have an IQ test. How do you fake that? You know you'd have to have a psychologist sign off on that. How would you fake all the therapy notes? How would you fool a service coordinator coming out of your house so regularly? I think it would be very challenging to try to do that.
Speaker 2:But you also asked that really important question about advocacy and the thing is it is exhausting and it can be better or worse depending on what state you're in. If you're in Texas, they really don't prioritize funding these programs and there are 311,000 people with intellectual and developmental disabilities on their waiting list and they have the highest number by far. We're at like 7,000 something here in Georgia. And then there are some states that fully fund them, like North Dakota, idaho, massachusetts, minnesota. There's some states where that's happening, but it is so scary because when you have these services you really rely on people, first of all your support providers, so we call them direct support providers, day programs. You really rely on them to facilitate you being able to work and to be able to live your life and sometimes get a bit of a break. And so the thought of taking them away I will say, especially for people who have very significant disabilities, it is, it's, it, it's life-threatening, it's it's, it's devastating, it's life-threatening, and it's so exhausting because you wake up at like I mean I do this.
Speaker 2:I the other day when we were, I woke up at 2.30 in the morning just in a panic that they're going to make these cuts. And it's because it allows us to live our life, it allows our kids to live a life where they get to be out in the community and contributing. And Andy does. I mean Andy is a coach, he is an employee, he's an artist, he's a good friend and the world would be missing a lot if he weren't, if he weren't actively engaged that way. But then the other people I worry about is our direct support providers. I mean, these are their jobs, they are some of the most committed people and it's scary to think that that they would lose that security too. And in our case it's been really cool because we've hired a lot of young people who have then used that as a launchpad to go into helping careers.
Speaker 1:So, even though this bill is not specifically saying that these waivers are going to be cut, you see that there is this ripple effect that potentially, is going to disproportionately affect programs like this and really hurt people who are living with disabilities.
Speaker 2:Is that fair? So what ends up happening? The ripple effect here is that, with these limits on the provider taxes states can charge, with the limits on the federal matching, they end up having state budget problems, right when they lose that money for their state. They have to decide are we going to raise taxes or are we going to cut optional programs, and so, a lot of times, what we have seen historically is that they cut these optional programs, and I think people might be wondering, like why is something that's so critical that? I think most people would be like yeah, we definitely want to make sure people with disabilities have access to these services. I think that's you know.
Speaker 2:I live in a very conservative area, and I think most of my friends and family around here who share those values. They don't want to see the deficit increase, and they also want to see that people with disabilities are getting the services that they need, and the reason why, though, these are optional services is because the default is institutionalized care, like I was mentioning before, when I said the doctor had to sign off and say that this person would qualify for institutionalization if the family weren't taking care of them, and that's because it was written into law long ago. That institutionalization was their default, and that's why they call it a waiver when they have a community home and community-based service waiver Katie Beckett waiver because it basically means that instead of the state taking money for the institutionalized care of these people, instead they're waiving that institutionalization requirement and instead giving them services in the community, and so that's why it's optional. Now, if we wanted to show up in mass and institutionalize our children, the state would be obligated to do it under federal law. But that's not what any of us want to do.
Speaker 2:And not only that. We've worked really, really hard to actually close most of those institutions, because what we found happened there was, people were abused, neglected, terrible circumstances and I have a family member who was actually one of those people who lived there back in, you know, was put in there in 1970., interestingly enough, when there were some administrative snafus here in Georgia because of the red tape that got added, he actually and this is a person who was in state care and actually in an institution from 19,. He was born in 1960. He was in an institution from 1970 to 2003, and he now lives in a host home to 2003. And he now lives in a host home. He is profoundly disabled and aging at the same time and needs help with toileting and a lot of other aspects of his daily living, and they actually cut his Medicaid Because of why? Because he hadn't received the letter for redetermination, because he moved and they should have known he is in state care in the host home.
Speaker 1:That's a whole other layer of this bill. That seems to me that those are the types of barriers that they see as reducing Medicaid use. It's just like making it harder for people to get it, people who really need it at the fact that institutionalization was the default.
Speaker 2:The reason why the federal government even agreed to these waivers actually in the 1980s under President Reagan, was when they started them was because it's actually well. Specifically the Katie Beckett Medicaid waiver was under President Reagan. But the reason why they started them is because it's also cheaper. Because if you know that my friend I was talking about earlier, lindsay if she were to put her kids in institutionalized care, someone else would have to be doing the nursing level care. She does 16 hours a day, 24 hours a day. Yeah, in addition, yeah, I mean, but I guess I was meaning that she gives that 16 hours a day where the right now the government is just paying for the eight hours a day that they're in their day program, you know. So it was actually initially seen as a cost saving measure, but now it's kind of biting us because it's seen as an optional program.
Speaker 1:Yeah, but there are no other options. Do you have ideas about what could be done that you could see a reduction in the deficit and also avoiding drastic cuts to crucial programs like Medicaid?
Speaker 2:Yeah, and I mean I think it's important to remember that these waivers are funded through a combination of state and federal dollars, and states only get the matching federal funds if they put in the money and prioritize people with disabilities first. And this means that when states are squeezed by the provisions in this big beautiful bill, they really don't have a lot of options here. So my guess is that most people don't want to raise the deficit and they also don't want to cut these vital services. And I have to admit I am not a financial expert, but I do know that to really address the deficit problem you have to be willing to cut some costs but also increase the income somehow, and my vote would be for the country to get income from people who can afford it the most and who have honestly lobbied for special tax breaks for themselves that most of us don't get.
Speaker 2:I think what a lot of people might not realize is another provision in this bill is to increase the exemption for the death gift tax from $10 million to $15 million and to make that permanent.
Speaker 2:I mean, how many people does that benefit Seriously, and I would rather, as someone who would never see the benefit of that, I would rather see income coming from taxes from some of those estates and instead avoid making cuts that are going to hurt our most vulnerable Americans. I think there's one group that can take the hit a lot better than the other in that case, and I think that if the legislators are so certain about the value of this bill for the American public, then let's allow for further evaluation of the financial components the impact it's going to have on the deficit, the impact it's going to have on people being able to keep their Medicaid and Medicare and let's debate it instead of just rushing it through. And I mean there was a lot of criticism about the Affordable Care Act, that it was passed too fast and that we didn't have an opportunity to read it all and all of those things. Well, what's the difference here?
Speaker 1:Yeah, yeah, it doesn't seem like we're slowing down to consider the implications of all of this. So we're here. What can we do in this moment? I know that this passed the House by such a slim margin one vote and now on to the Senate. So what's next? What can we do?
Speaker 2:I mean, I think now's really the time to rally and let your senators know, particularly if you have a Republican senator, let them know your concerns about this bill, whether it's the deficit issue, the possible implications for Medicaid, medicare, education, any of the concerns you have.
Speaker 2:Let them know now. Now is absolutely the time to get in gear and do that. And another option is to contact your governor, because many of them are going to bear the brunt of these cuts, particularly, like we were saying about the provider taxes for the states and let them know that you oppose the bill as written and that they need to go back to the drawing board so that they don't end up hurting the people we love the most. And the way you can do that is you can call the capital switchboard, calling 202-224-3121. You just tell them what state you're from and they will connect you to your senators. And we'll also provide a link in the podcast and you can find your governor's contact information in another link that we'll provide. And I know a lot of people also use the Five Calls app and that will connect you to your legislators as well.
Speaker 1:Well, I guess, as far as just kind of closing out here today, stephanie, our shout outs and our gratitude, I just want to say I'm grateful to work with you and that we could just jump on and have this conversation today and for all of the analysis you've done on these issues and it's been much appreciated to see your writing and advocacy on these issues. That makes it very easy to understand and to share and to really understand the importance of these issues in this moment, and so thank you.
Speaker 2:Thank you so much.
Speaker 2:Well, and I'm grateful to be here at GSF where we're able to have these conversations and share our insights, and I'm also grateful to the people who I have so many mentors who've educated me about policy over the years and who continue to do so Allison Hassett-Wall and Allison Barkoff, who are also talking about the importance about preserving the administration on community living, that there are proposed cuts to that in this bill and that is a central agency or administration that's provided support to people with disabilities and aging Americans.
Speaker 2:I'm also incredibly grateful for ADAPT, which is the disability advocates who actually go to DC and get in the halls of Congress and talk about the importance of Medicaid. They inspire me and I think that we just need to keep in mind that we're judged by how we treat the most vulnerable among us in any society and who do. We actually want to be included in our communities and, quite frankly, I think my friends with disabilities and my son are such an asset and we need to make sure that it continues to be possible for them to be there and engaged and fulfilling their potential.
Speaker 1:We'll be back soon. Stay tuned for our next episode. We invite you to share our podcast and thank you so much for listening and being here today. Thank you.
