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
Understanding Medicaid's Crucial Role for People with Disabilities
Join us as we explore the vital role Medicaid plays for individuals with disabilities and genetic conditions in our latest podcast episode. With heartfelt stories from families navigating the complexities of disability support, we dive into the importance of advocacy. This episode features insights from seasoned advocates and personal anecdotes that highlight how Medicaid is more than just insurance; it is a lifeline that ensures essential services are accessible to people with disabilities.
Listeners will gain valuable knowledge about the history and present state of Medicaid, alongside actionable strategies for advocating for policy changes. We also address the pressing need for engagement in legislative issues affecting individuals with disabilities, emphasizing the role of storytelling in advocacy.
Our conversation culminates in a call to action for audiences to share their experiences and engage with their representatives. We believe that every voice matters in the fight for equitable access and support for all. Tune in, share your thoughts, and get inspired to make a difference! Subscribe, leave a review, and consider supporting our work at the Genetic Support Foundation.
Call to Action:
To express your support for Medicaid, you can use the 5 Calls App, call the Capitol Switchboard at (202) 224-3121, or email or visit your representative (https://www.house.gov/representatives/find-your-representative). Just say, "We understand the value of Medicaid for people with disabilities and want you to continue funding this important program."
Correction: The integrated, competitive employment (not unemployment) rate for people with intellectual and developmental disabilities is currently about 16%.
Genetic Support Foundation: https://geneticsupportfoundation.org/
Lettercase National Center for Prenatal and Postnatal Resources: https://www.lettercase.org/
Greetings and welcome to the Coded Podcast. I'm Katie Stoll, Executive Director at Genetic Support Foundation.
Speaker 2:And I'm Stephanie Meredith, Development Director at the Genetic Support Foundation and Director of Lettercase National Center for Prenatal and Postnatal Resources. I'm also the mom of a very cool 25-year-old with Down syndrome.
Speaker 1:And welcome to this very first official episode of the Coded Podcast. We are just back this morning from the Down syndrome affiliates in action meeting that took place in Albuquerque, New Mexico, this past Thursday through Sunday and I'd love, Stephanie, if you could share a little bit. I know you have a long history with Down Syndrome as fully as an action, and can share a little bit about what that's all about.
Speaker 2:Yeah, I realized at this conference that I had been. I think I've gone to 15 of them and they are meetings that bring together leaders from Down Syndrome advocacy organizations all over the country to share different ideas about best practices, ranging from fundraising to policy issues, and just really helping people share the best ideas that are happening around the country.
Speaker 1:Do you have any highlights you'd like to share from the meeting?
Speaker 2:Oh, yes, I did I wanted to share. First of all, during our session, we had the opportunity to speak about how local organizations can partner with genetic counselors to build relationships with medical providers and also disseminate accurate, balanced, up-to-date information about genetic conditions to ideally improve diagnosis experiences. So we really taught them about how they could connect with genetic counseling programs, how they could make inroads into hospitals by working alongside genetic counselors. So we really try to give some practical strategies for building relationships with medical and genetics professionals and trying to improve experiences for families on the other end.
Speaker 1:Yeah, it was great to be a part of that presentation and discouraging, I will say, to hear that still there's many people that are not receiving the best diagnosis experience when receiving a new prenatal or postnatal diagnosis. But really inspiring to see how much work is being done in this area and how these advocates from all over the country are doing this work and building bridges with medical providers and getting those resources out there. I learned a ton at the conference. I loved attending sessions on everything from fundraising to building community partnerships and I wanted to just give a special shout out to the Down Syndrome Association of San Antonio. Leaders from their organization, magali Diaz and Faith Lavario, gave a great presentation on starting a new podcast and definitely gave us some of the tools that we're using today and the confidence to just jump right in and do it. So thank you for all of that. I also wanted just to share that the policy updates provided by some of the national organizations were really important and, I think, really have prompted us to want to do more, to speak up about some of the policy issues that right now are important to pay attention to with regards to the potential impact on patients and families.
Speaker 1:We serve at Genetic Support Foundation and we wanted to spend some focus time on that. So today we're going to talk about Medicaid and what it means for people with disabilities, genetic conditions and why we need to advocate to protect it. So tomorrow, the House of Representatives will be voting on the budget reconciliation. That would require cutting funds through the Energy and Commerce. This is the committee that appropriates federal funds for Medicaid. We know that many people that we care for at Genetic Support Foundation really depend on Medicaid for their health care, and this is not just true for GSF, but really across our country.
Speaker 1:One in five Americans are covered by Medicaid, including eight in 10 children that live in poverty, as well as about a quarter of adults, 19 to age 65, who are living with disabilities. Medicaid is funded by both state and federal funds and there are some broad guidelines that allow some flexibility between states in terms of how Medicaid programs are administered guidelines that allow some flexibility between states in terms of how Medicaid programs are administered, but generally, across all states, eligibility for Medicaid is determined based on the federal poverty guidelines, a percentage of the federal poverty guidelines. Most states have that eligibility set at 138% of federal poverty guidelines, which in 2025, just to give you an idea about what that is 138% of federal poverty guidelines is about $22,000 annual income for an individual, or $37,000 for an annual income for a family of three. There are a couple states that have higher limits and a handful of states that have lower limits for coverage for Medicaid as well.
Speaker 1:I think many people think about Medicaid as providing health care insurance for people with low income, and that's true, but in fact, it does so much more. It's really a safety net providing essential services for people with disability, for sick children, for elderly people who need long-term care. So, stephanie, you wrote a really powerful post about how vital Medicaid has been for your son and for others with disabilities, and I'm hoping you can share a little bit more about that how Medicaid has been important for your family.
Speaker 2:Yeah, absolutely, and I think you know, when you hear one in four people with disabilities use Medicaid, when you actually get into people with significant disabilities, but according to the law and the receipt of benefits, he really does. And like when I actually look at his needs, even though I am so proud of him and he contributes so much to the world, there are ways in which he needs a lot of help. So when you actually look at the domains that professionals look at to determine disability, he does need help in a number of different areas. And so the vast majority of these people with significant disabilities do rely on Medicaid for their primary health insurance and that's really critical because they rarely have jobs that provide benefits and employment really is a challenge, not because they don't want to work, but because they still face a lot of discrimination even in getting jobs. So the unemployment rate for people with intellectual and developmental disabilities hovers around 12 to 15%. So it's much lower than that community would want and we're always working at getting that better. We're very fortunate Andy's been working since he was 17, but it definitely takes job coaching and some support someplace to make that happen, and an employer that believes in them gives them an opportunity, and people with disabilities also rely on different types of Medicaid waivers that I think most people haven't even ever heard of. You don't really know until you live it. And the other thing that can be confusing about it is that we live in Georgia and waivers for people with disabilities are called by different names in different states, are called by different names in different states, so people might not recognize that they have the same type of waiver. I do a lot of work in Kentucky and there they call it the Michelle P waiver, so sometimes it's called the name of someone who advocated for it. And in Georgia I have a NOW waiver which is it's the same thing, but basically they all fell under the umbrella of home and community-based services waivers and I'll get to that in a minute.
Speaker 2:So typically for children with disabilities so, starting at kind of that first point on the life course they would qualify for a Katie Beckett waiver or TEFRA it's called through that law and that can be primary or secondary insurance for children with disabilities. It allows them to. It allows children with disabilities to get Medicaid regardless of the parent's income. So even if they don't, even if they earn above that minimum threshold, they can get this waiver to still access that Medicaid health insurance. And the reason why that's important, even if you have employer coverage, is that Medicaid coverage covers things that you might not be able to get otherwise. So things like medical equipment like Andy needed hearing aids, and regular insurance doesn't usually cover hearing aids and those are very expensive. If you're like we were a young family, you know, just starting out with a, with your first kid, and in our case our first kid had Down syndrome, so that was really important for us.
Speaker 2:Also, therapies speech therapy usually regular health insurance would only cover at that time rehabilitative speech therapy, but not developmental. So Medicaid, katie Beckett, medicaid covered that it also covered, didn't have a limit. So our regular health insurance policy sometimes would only allow for 30 visits a year or 20 visits a year, sometimes would only allow for 30 visits a year or 20 visits a year. And a child with a disability will often need therapy, you know, maybe three to five times a week and to develop those skills because especially during that, those early formative years, they need a lot of help to reach those developmental milestones and so those are some things to consider. And so those are some things to consider and Andy definitely used those therapies and they helped him to develop those speech skills and he wasn't really talking in full sentences until about eight. Now we can't get him to stop. He monologues a lot to us about lots of things he cares about, but I love that he has a voice and he wouldn't have that if it weren't for um, for the waiver.
Speaker 2:And now, uh, there, as people enter adulthood, then they also it. Actually it can be not just adulthood, but especially it's needed in adulthood. But sometimes children are able to get them to, depending on the state, um, um, our home and community-based services waivers, and again, just like the Katie Beckett waiver, those are a combination of state and federal dollars. So sometimes you'll hear that, oh, people in this state are always getting this waiver, and in some states people are like I've been on a waiting list for 17 years, which was our case here in Georgia. We were on the waiting list for 17 years for this home and community-based services waiver, and that's because it depends on how much your state funds it, and then they get federal matching dollars for that.
Speaker 2:And what home and community-based services waivers pay for are things like day programs where people with maybe intellectual and developmental disabilities go for eight hours a day and this often allows their parents to go to work because they're providing. Some of these people require 24-hour care. We've got a good friend who's got two boys with the Jacobson syndrome and they require that level of care and so she's doing that work, you know, 16 hours a day, but she needs that. She gets that eight hours a day where they're in a day program. It also pays for support staff in the community. So in our case, andy has a support staff who takes him to do all the things that make his life meaningful and also allow him to contribute to the community. His support staff helps him learn how to do laundry and nutrition and exercise and develop independent living skills, while at the same time taking him to lacrosse and church activities where he contributes to the world around him. It also pays for things normal insurance doesn't cover, like diapers for adults with disabilities. For some reason, insurance cuts out at 18, but there are people who need diapers beyond that Formula for tube feeding and costly medical equipment and most families can't afford to pay for all of that out of pocket and they're very expensive and these types of waivers are only used by these and they're specifically long term services waivers.
Speaker 2:They're used by about 6% of the Medicaid population but account for about 37% of the budget, and even though, yes, that's a lot, the idea is that we as a society care enough about these people that we want them to be part of our communities.
Speaker 2:We want to help families so that they can thrive, and I mean these are the people you see at your night to shine, proms and Special Olympics and who really are and who, like in my son's case, he's also integrated in the community, where he's, you know, coaching a lacrosse team of boys, where he's a real mentor to them and a good example, and so that's what allows them to have the infrastructure to be, you know, part of the community.
Speaker 2:And you know just to kind of also explain this part that these waivers aren't just given out willy-nilly.
Speaker 2:They require significant documentation of disabilities and sometimes many years, as I mentioned before, of being on a waiting list, and so, like, our application can literally require like 80 pages of documentation.
Speaker 2:It is, you know, records of therapy notes, it is letters from doctors, it is IQ tests even for people with Down syndrome like to prove their disability, even though that's common for almost every person with Down syndrome, to have an intellectual disability. So there's I personally cannot imagine a way that you could cheat the system and have, you know, have a disability declared for a home and community based services waiver. And so it is really essential, though, for families like ours, because that support staff, in our case, allows my husband and I, for example, to work 40 to 60 hours a week where we contribute to the community. It allows Andy to go out into the community, develop independence, and it also gives a job to his support staff, and you know we've had a number of people over the years who've been in that position and maybe moved on even to study, to become a therapist or to become a special education teacher. So just really critical services for our community.
Speaker 1:That's so important, so important. Can you share a little bit about the history of waivers and why these waivers were created in the first place?
Speaker 2:Yeah, so back in the 1960s most people with disabilities lived in institutions and these were very costly and really had terrible conditions a lot of filth, a lot of just exclusion from society. And those conditions were actually exposed in the 1970s. There was a big of all. I know this is going way back, but Geraldo Rivera did a big expose on the Willowbrook Institution in New York where they found, you know, people, I mean living in their own, they were nude and they were living in literally their own filth and crowded into rooms and it was very inhumane their own filth and crowded into rooms, and it was very inhumane. They were doing experiments on these people, testing, you know, hepatitis vaccines and giving them chocolate milk with feces in it to see if it worked, and it was just horrific.
Speaker 2:And so when this was all exposed, families started saying, look, we are, you know, we don't want our family members to be raised in these conditions, because before that it was kind of seen as the compassionate alternative Send your child away, we will take care of them, we will make this happen. And families were like, no, this isn't what we were promised. And so, as these families started keeping their loved ones at home which was, by the way, cheaper than sending them to an institution, because institutions cost a lot of money to maintain a building with staff, even in those squalid conditions. So it was cheaper for them to live in the community and it was better for the people with disabilities, but they needed help to pay for it. And so that's where the idea was to pull some of that money that was going toward institutions and give it to the families so they could raise their children at home.
Speaker 2:And unfortunately, it took a long time to move from one model to the other, and so the institutions kept keeping a big chunk of that money, and now we're kind of getting to the point where more families are able to access it themselves. And and, to be honest, you know, especially for the Katie Beckett deeming waiver, the reason why it's called Katie Beckett is because there was a little girl with a disability whose mother and family wanted to raise her at home, and they appealed to President Reagan and said hey, you know, it would be a lot cheaper. It's a lot cheaper for us to provide this intensive care than for us to send someone else to do it, and there was an agreement that that, yes, that is a good point and that's something we want to facilitate through federal and state funds.
Speaker 1:So, Stephanie, I know that there have been people that have kind of with with the potential the administration promising not to cut Medicare Medicaid. Do disability advocates really need to be worried about this, and how would you respond to that?
Speaker 2:Yeah, and I think you know, even though President Trump made that promise, the House proposed to cut $880 billion over 10 years to you know that Energy and Commerce Committee and you know both Republicans and Democrats alike have expressed concern about whether that can be done without steep cuts to Medicaid and the other entitlement programs like Social Security and Medicare. But specifically Medicaid is the most vulnerable because it benefits the smallest percentage of you know, especially for people with disabilities a smaller percentage of the population and they also worry about how that's going to be done. So some of the previously proposed strategies for lowering Medicaid costs have been like Medicaid caps per person, which you know, as I discussed before about some of those intensive, those people with intensive needs. If you put a lifetime cap on them, they're going to hit that so soon. Or if you have like Medicaid block grants to a state, you might have a state that has a lot more people who need home and community-based services waivers, and so if you put a block grant in there, that state won't be able to get the federal funds that they need to meet the needs of that population. So that's where a lot of the concern comes in to make sure that any decision is done with precision and with talking to people in the community, because it's such a niche that you want to make sure that you're not just applying broad strokes to something that's very, very complicated and that can impact people's lives so profoundly.
Speaker 2:And I'll give an example and we aren't the most significantly impacted. Among the families that I know, andy is able to do a lot of things. Among the families that I know, andy is able to do a lot of things. But even for us, we had a little glitch in our budget this past month and with it getting inputted into the system and we've had a lot of people working on it. They're being very diligent.
Speaker 2:But it's scary because you start when you have staff that's working with your loved one for 30 hours a week and there's a labor shortage right now of people who do that work. And in our case we have like the best guy, so attentive, he and my son have so much fun together and also get a lot of good work done and we were then three weeks out without being able to get him paid and, number one, I would never let him go without being paid. So that would be a financial hardship on our family because we're not going to let that happen to him because he's done the work. But then the other piece of it is that you know we have to stop scheduling him then, and then Andy misses out on opportunities, my husband and I miss out on work.
Speaker 2:It becomes this whole cascade of impacts, and so you know you can't put a pause on the needs of our kids. They just don't. It continues each day, and so that's where you know we really need people who are, um, very deliberate, very purposeful about it, and it's also why it's so scary to us, because we can't take even a month, we can't even take like a two, three week pause and and have it be sustainable.
Speaker 1:Yeah, we it's. It would really hurt people to have any kind of delay with this. For sure I know the other kind of pushback you're getting is just people with concern that you're overreacting and bringing this up and asking people to take action at this time and wondering how you'd respond to that.
Speaker 2:I mean, first of all, I really hope. I hope we are overreacting and that nothing's going to happen, right, but you know, here's kind of the deal to consider. Any other lobbyist is in there advocating every day to flex their muscle, and so should the most vulnerable populations who really need those federal funds. And if we advocate to members of Congress who always planned on supporting us, then no harm done, like we've just shown how much this issue matters to people. But if we don't, and these cuts are made that do impact our population, the results will be catastrophic for us. So for me it's a risk assessment. Like the results will be catastrophic for us. So for me it's a risk assessment. Like, why wouldn't I do the thing that? Could you know? If it doesn't work, no big deal. Or if they were already planning on doing the work, no big deal. But you know the risk of inaction is just a lot more profound. So that's what I'm going to do. And also, you know it helps to go in there and talk about some of the key elements, like the block grants and the per capita caps that maybe they're just considering. I mean I'd, oh, if we just give this block of money to the states, they'll decide how to spend it. They know their own people Well. But if they don't have access to a bigger pool of funds, if they have more disabled, significantly disabled people, then it's going to be a problem.
Speaker 2:And you know, when we went into talking to our legislator, for example, he knew about the Katie Beckett waiver. Well, this is the staffer and he was really kind, he was taking notes. I know he was concerned, right, we had five, I think five or six families representing different conditions who went in there and we said, look, this is a really important issue for us. And he had never heard even of home and community-based services waiver. He didn't know that, all of the different components it pays for with the day program, with the formula, with the medical equipment, and he actually, I guess, had been very involved in the day program in our area and a big advocate for it, but didn't realize that 95% of the people there get their services paid for through a Medicaid waiver. And so unless someone really kind of points out these niche issues to you, you don't know. So I think there is absolutely no harm in going in and educating your congressional staff and your congressperson about the issues that matter the most to you.
Speaker 1:Absolutely. That experience you had of realizing kind of the deficit knowledge of the staffer, I think was kind of key to why we wanted to have this conversation today is that I think a lot of people you don't know what you don't know, and it's important that that our representatives hear from us about these issues that matter. I think it really helps them in advocating for their constituents as well. So so, with our call to action today, can you share what you think are the best ways for people to get in touch with their legislators? Let them know why this matters.
Speaker 2:Yeah, absolutely. We have a lot of different options at our disposal, depending on what you're most comfortable with. You can use apps like Five Calls, where it will automatically generate contact with a number of different legislators. You can go to congressgov and use the find your member tool and that'll tell you the contact information for your senators and your House of Representative member. You can also just call the Capitol switchboard if you would rather use a phone, so that's 202-224-3121. Or we all have.
Speaker 2:All of our congressional members have district offices and usually they're pretty close. So our Congress members district office was actually just less than half a mile from my husband's office in our little downtown area and we called them up. They were very responsive, set us up with a staffer and you'd be surprised how many people don't go talk to them and it's you know. It's not that hard to get in there and it's really important to get in there. And if you live close enough or you're at some kind of advocacy event, you can go to their DC office. I think that's a lot harder for most of us because we don't live close by, but those district offices are just right down the road. And as far as impact what we learned at this DSAIA conference is that you know, the number one, most impactful way to reach out is a visit in person, and then the second is a phone call and last is an email or text. And you know, I think it's just really important, when you go in and you talk to these people, to treat them like humans, you know, be genuine and share your story, give them the benefit of the doubt that they want to serve their constituents.
Speaker 2:The other thing we did was we made a one pager with our asks. We were really concerned about three things and we were concerned number one with Medicaid, number two with special education and number three with research about people with disabilities and medically vulnerable people. And then we also made a one pager sharing our story with photos about our kids. And you know this doesn't have to be fancy. We did them on. You know, they were just little word documents.
Speaker 2:I did mine in Canva because I try to be a little more fancy, but it doesn't have to be anything. You know that polished, as a matter of fact, I think the more heartfelt it is, the more homemade it is, the more they realize where their constituents and sharing things that you have in common. You know, telling him my husband works right down the road and he's, you know, doing these things, and oh yeah, we have this friend in common who runs a day program, and making those personal connections is really important. And I think, finally, it's really important to write a thank you note. So, after you go, thank them for their time and also send them a follow-up email with everybody's name and contact information.
Speaker 1:That's great tips. Don't be nervous, just jump on in and do it, and the time is really now because, you know, as we shared at the beginning, this vote is tomorrow, so today is Monday, february 24th, so we encourage you to take action sooner, sooner than later. Well, we'd like to end our coded podcast with just some things that we're grateful for, things that we're reflecting on, and so I think, in closing out today, stephanie, I'll let you go first.
Speaker 2:Sure, sure. So there was kind of a similar situation back in 2017, where there was the proposal to move to block grants and do some some shifting of Medicaid that way, and a lot of advocacy from disability groups, from from patient advocates, from patient advocates, and really it just took one senator, senator John McCain, to kind of to nix that vote as far as changing Medicaid to block grants. And you know, it only takes sometimes one person and in this case, with our current Congress, it's a real close margin and so it's important for them to actually be working together and come up with the best solutions. And that's not to say that we don't need to make moves to get rid of fraud in programs to address issues that people have, but make sure that they are precise and that they don't actually hurt members of a district and constituents.
Speaker 2:And I think the other thing other shout out I want to give is to all of these advocacy organizations who are on the ground every day and they aren't partisan, they aren't looking for a particular political agenda. What they care about is the populations they serve. So you know, when the National Down Syndrome Society, the National Down Syndrome Congress, when they tell me that something is an issue. I know that those are policy experts that I've known for 20 years and that they are on the Hill every day advocating for my son, and so they are the people I trust first and foremost for my news, and I think that you know it's. It's really important to pay attention to those advocacy organizations that genuinely care about your you know, your population.
Speaker 1:Yeah, that was actually what I wanted to reference back to too, for what I'm feeling grateful and appreciative of this week. I was really impressed by the advocacy organizations on the national level the National Down Syndrome Congress, with Stephanie Smith Lee's presentation, anna Fedwa of National Down Syndrome Society Society and other leaders from national organizations who really have been working tirelessly to get the facts, get them straight and get communications out to their members about important policy items that we need to be paying attention to. And then just the grassroots organizing of all of these, these leaders from across the country. I mean every corner, from remote islands in Alaska to, you know, coast to coast. We saw people there, you know, advocating and working for their communities, and I just feel really inspired by that and and just want to keep, keep going too, in the work that I'm doing in my own personal life and in our work at GSF too.
Speaker 1:Well, thank you all for joining us on this first Coded podcast. We were, well, we're going to see how frequently we can record these podcasts, so stay tuned for our next one. We'll, um, we'll be out in a couple of weeks with with a new topic and um, in the meantime, please, uh, subscribe, like our podcast, share it and um share your comments about anything you'd like to be hearing from in the future. Any last words, stephanie.
Speaker 2:Yeah, I just also wanted to thank people for joining and also put a shout out to the Genetic Support Foundation that makes it possible for us to go to these conferences and do this podcast, and if you like the content, if you like the work that we're doing, please consider making a donation at geneticsupportfoundationorg.
Speaker 1:Until next time. Thanks,
