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Kay Johnson: Someone.

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Kima Taylor: Hello, thank you all for coming to the webinar. I'm actually going to give it, like, one minute, just so that, as many people as possible can join.

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Kima Taylor: Again, though, really want to thank you for joining us for this particular Medicaid Connections, which is the second in a series of conversations.

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Kima Taylor: So we'll just give it one minute, one minute more for folks to come on board.

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Kima Taylor: Hopefully you're getting through the day. I was telling my daughter that I couldn't believe it was only Tuesday.

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Kima Taylor: But we'll make it through.

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Kima Taylor: Okay, I guess I can go ahead and get started. And like I said, really want to thank you guys for coming to this particular Medicaid Connections conversation. My name is Kima Taylor, and along with my great partners Kaye and Elisabeth, we devised this series.

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Kima Taylor: It's a series that's really bred from necessity, in my perspective, for the purpose of bringing different, passionate people together to understand and coordinate strategies that can help improve well-being for all.

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Kima Taylor: The series is not for Medicaid experts. There's a lot of those. This one is not a focus on Medicaid experts. It's really for folks who

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Kima Taylor: don't understand necessarily every in and out of the legislation, the regulation, the implementation of Medicaid. But it's for anyone and all of us who want to improve holistic well-being and health in individuals, families, and communities. This series seeks to show how Medicaid is a crucial part of this goal.

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Kima Taylor: Medicaid has become entwined in so many systems and advocacy pushes, particularly for maternal and child health, that is often missed as a key building block.

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Kima Taylor: We want to show how it is, in fact, holding up many systemic changes, improving outcomes, and opening access not just to healthcare, but to health overall, and allowing people to participate more within communities, give back to communities and countries and families.

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Kima Taylor: Now, this is where folks usually get that sad look and are like, oh, she's so cute, she doesn't quite get it, Medicaid is so hard to understand. I get it. I've been working on this for decades. I'm almost 60.

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Kima Taylor: I understand that Medicaid is not perfect, but it truly is, I can tell you as a pediatrician, often the difference between life and death, working or not working, engaging or not engaging in your life, in your children's life, in your family, and thriving or not. It is imperfect, but necessary.

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Kima Taylor: These conversations seek to bring us together to fight for these basic building blocks of wellness, of which we know healthcare is but one.

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Kima Taylor: But an important place as you envision and fight for the implementation of future systems that will promote and ensure health and well-being for all of us, including those who've been historically and systematically excluded, including folks from all demographics.

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Kima Taylor: So you don't have to be a Medicaid expert, but what we want you to do is be an expert in caring and passion and love for communities, and find the places where we overlap so we can bolster this well-being for all of us.

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Kima Taylor: These conversations are a series of monthly conversations that tie history, including past successes, last and current catastrophes, and future planning and dreaming to save what is keeping folks alive, saving the Medicaid that exists and that we want to see exist, while we build what we truly hope to see.

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Kima Taylor: We hope you not only gain a lot today from conversations, but see ways to engage in your community with constituents you may never have talked to previously, but who fundamentally need to hear from you and your perspectives.

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Kima Taylor: We also hope that you join us in future conversations, which will be around substance use, immigration, mental health, and family preservation, as well as go to our website.

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Kima Taylor: So without further ado, I'm going to pass it on to my dear colleague, Elisabeth Barack, and she will get us started. Thanks again for joining.

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Elisabeth W Burak: Hi, everyone. Thank you so much for joining. We'll go ahead and go to the next slide.

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Elisabeth W Burak: Kima mentioned our series. We're really excited to be a part of this, and while no one here should be expected to be a Medicaid expert, we are going to make sure we give you enough nuance to understand

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Elisabeth W Burak: why it is so complex and why it's so important for a lot of the families we're trying to support. Next slide, please.

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Elisabeth W Burak: Well, we got this too. So, next slide, let's go to future topics. So, coming up, we'll talk about… next month is, Medicaid and substance.

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Elisabeth W Burak: use. In October, we'll be doing immigration, mental health and well-being in December, and we'll close out in January with family preservation, and a look at the child welfare intersections with Medicaid.

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Elisabeth W Burak: So, next slide.

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Elisabeth W Burak: You've already met, whoop!

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Elisabeth W Burak: There it is. We've already met, Dr. Kima Joy Taylor, who is one of our partners on this, a pediatrician by trade, which I will tell you, since she would not… might not, and… and, many of the other hats that she wears.

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Elisabeth W Burak: But, we also have Kaye Johnson, our other partner on this series, who's president of Johnson Policy Consulting. Kasey Dudley is joining us today as part of the panel, who is the Director of Parents as Champions at SPAN Parent Advocacy Network in Newark, New Jersey.

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Elisabeth W Burak: In her spare time, she's the president of her local school board, so she might have to leave a little early from the discussion to make that meeting.

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Elisabeth W Burak: Dr. Elisa Ware, who is the Executive Director of another great partner of ours, Family Voices.

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Elisabeth W Burak: It was such a national organization dedicated to this cause, and Kasey and Dr. Lisa are also parents of children, with special healthcare needs. And last but not least, Caitlin Feasby, who's the Managing Director of Policy for Groundwork Ohio.

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Elisabeth W Burak: is going to help us learn a little more about some of the debates happening in Ohio during the last legislative session on this topic.

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Elisabeth W Burak: So, next slide.

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Elisabeth W Burak: We have, sort of, our roadmap for today.

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Elisabeth W Burak: Kay Johnson's gonna give us a little bit of a brief history of Medicaid and children and youth with special healthcare needs.

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Elisabeth W Burak: We will talk a little bit about what Medicaid's role is for children and youth with special healthcare needs, including some… an overview of Medicaid financing, as well as some of the major threats we're seeing today to Medicaid, and why we're trying to grow the

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Elisabeth W Burak: The chorus of folks who understand and can speak out about its importance for children and youth with special healthcare needs and all the other groups that we care about.

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Elisabeth W Burak: Then my favorite part, we'll have a panel discussion with the esteemed speakers you've… I just introduced you to, and then we will have an audience Q&A at the end. You can put your questions in the Q&A function in the Zoom at any point, so we will have those ready.

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Elisabeth W Burak: And last but not least, this webinar is being recorded. We will send it out to all the registrants, along with all of the resources that we share in the chat today, and we'll also post that on the Medicaid Connection site that we've shared as well.

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Elisabeth W Burak: Okay, so I'm going to turn it to, Kaye, who's going to talk a little bit about, sort of, the history and politics around children and youth with special healthcare needs. Thanks, Kaye.

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Kay Johnson: Thank you, Elisabeth. So, next slide, please. So, I'm really delighted to be here and to be a partner in this effort. I'm going to give you a few historical perspectives and just a little bit of overview on this topic, some of this based on my 40 years of work on this topic. And for this series, I'm trying to highlight one example of what one individual can do in a leadership sense.

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Kay Johnson: And I'm going to do that today about Julie Beckett, and we're… and I talk about one… what I call the Big P politics of these issues, to kind of delve into how things flow, and that's going to be about SSI. But next slide, please.

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Kay Johnson: I wanted to start with this quote from Judy Heumann and John Wodach, who say, our nation's disability history is daunting, and I would say our world's disability history is daunting.

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Kay Johnson: People have experienced

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Kay Johnson: legalized segregation, been excluded from public schools, been shut away for life in custodial institutions, been prohibited from marrying, and been forced to be sterilized. And as they say, part of the solution will require new laws and better enforcement of the existing ones.

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Kay Johnson: And then they talk about going beyond that, so that we're really creating a society where people… where it's not just the law enforcing all these little things, but really an open society where people with disabilities are welcomed and included. Next slide, please.

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Kay Johnson: There are some drivers around public opinion and policy, and I think these are some of my most important observations about how these things have changed over the past 40 years and what's been driving. The first one is who pays. So, how people accept a program that's directly federally state funded, such as Medicaid or the Title V block grant programs.

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Kay Johnson: is different than how they accept special education programs that may affect their local property taxes, and they feel that more directly, and they see that relationship in their community. And then, of course, families have an extra burden, and their share of costs and what they have to pay is a part of this picture.

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Kay Johnson: There's also a lot of drivers around which conditions and which children get attention. So we have a broad, carefully constructed definition of children with special healthcare needs.

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Kay Johnson: It's not consistently used across programs, it's not even consistently used across Title V programs. We have a definition of disability that's constantly evolving because biomedical things are evolving, our understanding of social factors and functional limitations are all evolving.

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Kay Johnson: We have definitions, diagnoses, and eligibility that are driven by state and federal policy, but also they're really driven by ableism, racism, and classism.

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Kay Johnson: For a long time, in a lot of quarters, there was sympathy for crippled children, but there's been a lot of antagonism in recent years about entitlements to those who are seen as able-bodied, and there's a lot of skepticism about mental health and developmental conditions.

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Kay Johnson: And sometimes we're using lists and arbitrary cutoffs and see that as okay, but mostly we want to be moving to individualized assessments and determinations.

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Kay Johnson: The third big factor is that role of advocacy and the policy entrepreneurs. Self-advocates for adults with disabilities have been a major force in disability policy, but for children, parent advocacy is often really at the forefront.

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Kay Johnson: And there's been extraordinary gains as a result of the efforts of those parents.

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Kay Johnson: We also have conditions… sometimes a condition gets in vogue. They have very well-organized advocacy, or particularly vocal parents, and we like to keep, I think, our balance of, it's not about one condition, it's about all of the things that affect children and their health and well-being. Next, please.

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Kay Johnson: I didn't… I'm not going to read this slide, but I wanted to be sure to include a slide for you that's sort of the menu of the things that I think are key disability policies and programs. Those on the left really are directly related to Medicaid, connected to Medicaid, use Medicaid financing.

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Kay Johnson: in particular ways, and Elizabeth will talk about more of that. And those on the right, I think, are more related to the rights, health, and well-being of both children and adults with disabilities. So this is kind of a takeaway for you. Next slide, please.

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Kay Johnson: not going to spend a lot of time on the timeline, but we know that Medicaid,

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Kay Johnson: And Medicare were created in 1965, and in 1967, the EPSTC Child Health Benefit was created in Medicaid. Many of you have heard about the Rehab Act. It was enacted in 1973 with a lot of amendments since.

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Kay Johnson: 1975 for the education of all handicapped children, and then in 1986, the Part C early intervention birth to 3 program. And then in 1982, the Katie Beckett option. I'm going to talk more about that.

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Kay Johnson: There was a series of expansions of Medicaid between 1984 and 1990,

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Kay Johnson: And in 1990, the Americans with Disabilities Act, the Individuals with Disabilities Education Act, or IDEA, signed, and then the Zebley Supreme Court decision about children and the Supplemental Security Income Program, which I'll also talk more about.

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Kay Johnson: The Medicaid waivers for home and community-based services emerged, the CHIP program was created, the Olmsted decision made it the law that people would be served in community settings more than whenever possible, and then many other small things coming along in the 2000s, combating autism.

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Kay Johnson: genetic information non-discrimination. Of course, the Large Affordable Care Act, which has a lot of provisions related to disabilities.

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Kay Johnson: Things such as Rose's Law to make intellectual disability the accepted term rather than mental retardation. And in 2017, ADAPT activists really helped to save Medicaid and ACA, including a lot of parents of children with disabilities. Next, please.

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Kay Johnson: So, I talked about SSI, Supplemental Security Income Policy. It was not originally designed for children, and there was really an adult standard up until 1990. There was then a Supreme Court decision that said that's not really fair.

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Kay Johnson: And what we need is a way to determine eligibility for children that included an individualized functional assessment.

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Kay Johnson: and additional conditions on the list, and the number of children in SSI doubled. There was a backlash, and Congress returned to pre-Zebley SSI child standard, and the Personal Responsibility and Work Opportunity Reconciliation Act, often called PROURA,

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Kay Johnson: And Poira took away the functional assessment, it made the conditions need to be more severe, and more than 90,000 children lost their SSI, including a look back for some who had had it.

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Kay Johnson: We entered a fourth phase after that, where we really have been focused on who's deserving, and on a lot of accusations of frauds. The details of all of this are in the background sheet I prepared for today's webinar. I would just say Poira continues to be

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Kay Johnson: Having a lot of impact on children with disabilities, on access to publicly funded programs, and particularly for families with mixed immigration status.

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Kay Johnson: It's a penalty, fraud, deserving conversation, rather than a conversation about what children need. Next slide, please.

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Kay Johnson: So, I want to talk about Julie Beckett. Julie Beckett was a friend of mine. Julie Beckett was a colleague of mine. She was remarkable and indefatigable. As an infant.

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Kay Johnson: Katie Beckett contracted encephalitis and limited her ability to breathe without medical support. And back then, the law would have required that Katie live in an institution to qualify for Medicaid. Starting at age 3, this was happening.

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Kay Johnson: And then her mother, Julie Beckett, fought successfully to keep Katie at home, and continued to advocate for improving care for children with special healthcare needs for more than 35 years.

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Kay Johnson: She went to her congressman, who went to the Vice President Bush, who went to President Ronald Reagan, and there you can see, in 1984, Ronald Reagan holding Katie and helping to make sure that Katie and other children could stay at home.

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Kay Johnson: In the 1982 TEFRA, Congress created the Katie Beckett State Option, and this is the story of how the advocacy of one parent led to the creation of the Katie Beckett program and to other Medicaid and home and community-based services.

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Kay Johnson: With Polly Arango and Josie Wohl, Julie co-founded Families in part as a reaction to the Clinton administration not dealing with issues of children with special healthcare needs, and Alisa is going to be here representing Family Voices and telling us more about their legacy and their work today. Last slide, please.

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Kay Johnson: So, I just say we can do better. We're slicing and dicing our children. We squabble over physical versus developmental conditions, complex chronic illness or disability, whether it was detected in a newborn screening in a well-child visit or at school. We need to develop a unified front that engages families, providers, payers, and public agencies to get beyond our old rhetoric, to not fight about adult

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Kay Johnson: versus children, we hope these children with disabilities will grow to become adults.

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Kay Johnson: And they'll likely still have disabilities.

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Kay Johnson: We want to apply a broad and uniform definition for children with disabilities and special healthcare needs, so we get to a much more fair and equitable approach to how we care for them, love them, keep them in their homes and their communities. So, I turn it back to you, Elisabeth.

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Elisabeth W Burak: Thank you, Kaye. That is such important context. As we move forward and talk about the role Medicaid plays for children and youth with special healthcare needs, I always love hearing about Julie and Katie Beckett, and truly is a great example of how

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Elisabeth W Burak: Persistence and advocacy and partnership can make this work, and we can make real change.

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Elisabeth W Burak: So, I'm going to talk more about Medicaid, and I'm going to try to be relatively succinct so that we can get to the discussion, but what I want to say is we have a lot of information and resources on these slides and in the links, so that if you really want to dig into some of the details.

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Elisabeth W Burak: You can, and of course, you'll also be able to reach out to us if you have those questions as part of the webinar and the Q&A, or offline as well.

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Elisabeth W Burak: Okay, so next slide, please.

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Elisabeth W Burak: We, you know, Medicaid is an incredibly important, arguably the most important coverage source for children in the United States in recent years, covering nearly half of all children.

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Elisabeth W Burak: Covering nearly all of the children in the child welfare system. It… lots of… many childcare workers, many grandparents, many parents. We call this slide, it's a busy slide because Medicaid is very busy for families. A lot of people who couldn't otherwise afford insurance

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Elisabeth W Burak: or who might be underinsured can rely on Medicaid to meet their healthcare needs. Next slide.

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Elisabeth W Burak: Specifically for children and youth with special healthcare needs, more than 4 in 10 children with special healthcare needs are covered by Medicaid or CHIP.

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Elisabeth W Burak: And they're the… and Medicaid and CHIP are the only source of health coverage for a third of those children, particularly… and that's more so than compared to other children who don't have those needs.

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Elisabeth W Burak: Next slide.

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Elisabeth W Burak: I love maps, so I always like to show. This is really the share of kids with special healthcare needs by state.

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Elisabeth W Burak: That are covered by Medicaid, and CHIP.

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Elisabeth W Burak: And I'll just say that this is really based on what I'll say in the next slide. There are a lot of state options when it comes to how they cover their population, and children with healthcare needs, special healthcare needs are no different, and so that's why you'll see a fair amount of variation by state as to the kids with those needs and how they're covered. Next slide.

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Elisabeth W Burak: There are a lot of ways, as I just mentioned, to getting Medicaid coverage for children with disabilities, and

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Elisabeth W Burak: one, a lot of folks think it's really based on SSI. That's one of many paths to, getting Medicaid coverage. And many kids with special healthcare needs are covered based on income categories.

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Elisabeth W Burak: In Medicaid, and you can see on the left, those are sort of the… the median eligibility across states, just in Medicaid for kids.

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Elisabeth W Burak: And then others are covered by an income plus some sort of disability or health condition, including, as Kaye mentioned, the Katie Beckett option, which is an option states have to make sure kids can stay in their homes and communities, even if they have a particular high level of need.

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Elisabeth W Burak: And they don't have to go into residential or institutional settings.

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Elisabeth W Burak: So again, some of these are state options, some are minimums from the federal government that states can lay on, but many different ways in which kids might get enrolled in Medicaid. Next slide.

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Elisabeth W Burak: For kids with special healthcare needs, of course, there's a wide range of medical as well as long-term services and support, so they can stay in their homes and communities.

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Elisabeth W Burak: And again, all the things we think of that a lot of kids might need, like primary care and screenings and therapies, but also transportation and that long-term care and home care that might be necessary to keep those children at home.

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Elisabeth W Burak: Next slide.

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Elisabeth W Burak: The next two slides really go together. I like to think a lot about Medicaid and how it works with the Individuals with Disabilities Act, one of the many different laws that Kaye mentioned that are there to support people with disabilities and special healthcare needs.

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Elisabeth W Burak: There are a lot of parallels in these two programs, right? And for Medicaid, it's really there to furnish medical assistance, for those who are qualified and are eligible and enrolled.

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Elisabeth W Burak: And for kids, which I'll talk about in the next slide, the pediatric benefit is particularly strong to ensure every child gets the healthcare they need that's medically necessary. And IDEA is basically a right for children with disabilities to have a free and appropriate public education from

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Elisabeth W Burak: birth to 21. And, they don't necessarily have income criteria to be eligible like Medicaid does.

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Elisabeth W Burak: But they have certain rights in certain, in schools, individual ed… individualized educational programs, individualized family service plans for children under 3,

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Elisabeth W Burak: And for the health services in those plans, Medicaid, for those who are enrolled in Medicaid, often pays for those health services.

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Elisabeth W Burak: I think for anyone who's familiar with IDEA in schools, we know, and there's a link to a study that shows that, that the federal IDEA funds really pay for a very small portion of what districts and schools are paying to make sure that they are able to comply with those IEPs.

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Elisabeth W Burak: For kids, and so Medicaid is really an important source of, sort of, helping to make IDEA work… IDEA work in schools as well. So they work together.

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Elisabeth W Burak: Next slide.

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Elisabeth W Burak: One of the reasons that Medicaid is successful in that way is because of its comprehensive pediatric benefit. All children enrolled in Medicaid are entitled to

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Elisabeth W Burak: what we'll… the EPSDT, Early Periodic Screening Diagnostic and Treatment, that is the statutory language, really says all children should get the recommended screenings, including developmental screenings, all sort of recommended well-child visits that they need to find, detect, and address

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Elisabeth W Burak: diseases or complications or conditions before they get worse. And really, unlike Medicaid for adults, for children, prevention is really baked in, in a way that can… intended to really help think about the developmental sort of needs of children at every stage in their growth.

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Elisabeth W Burak: And benefits that are optional for adults in Medicaid and states are absolutely not optional for children. If they're medically necessary, and there's a whole process by which that gets determined, as Kay alluded to, then they should be able to get that… that treatment.

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Elisabeth W Burak: Next slide.

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Elisabeth W Burak: because of EPSDT, I would argue, a lot of parents, this is reporting from parents in the National Survey of Children's Health, a lot of parents really see… that have Medicaid either by itself or in partnership with private insurance, feel like they're getting their benefit, their needed benefits.

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Elisabeth W Burak: And that that care for their children is affordable, more so generally than private.

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Elisabeth W Burak: But the other reason I wanted to include this chart is because for kids enrolled in Medicaid, there are a lot of kids with special healthcare needs that might have private insurance.

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Elisabeth W Burak: but, might not fully meet the needs of those children, and if they're income eligible or can get into one of the other pathways in Medicaid, Medicaid serves as a wraparound for anything that private insurance isn't paying for, and that's really, really important for many families.

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Elisabeth W Burak: And I'll just say here, because we're at a point where we've looked at lots of charts and words, I've also included the words of many families in a piece that we did with Family Voices last year, where Family Voices did a great survey of many folk… many parents.

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Elisabeth W Burak: Where they talked about, you know, at the end of the day, this is about families and what they need. In the case of this family, Medicaid helped make sure their 3-year-old daughter got the right diagnosis.

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Elisabeth W Burak: Where she was able to really progress in… from nonverbal to speaking and reading in ways she wouldn't have gotten in South Carolina without it. So that's at the heart of why we talk about these things. Next slide.

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Elisabeth W Burak: Again, Medicaid's a major source of home and community-based services that allow, kids, people with disabilities, seniors to stay in homes and communities.

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Elisabeth W Burak: Many states have this Katie Beckett Medicaid waiver or option. In the case of the waivers, they might have a waiting list for that, others don't. But that ability to keep those kids at home and their families and helping them thrive in their communities

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Elisabeth W Burak: has really been, as this parent said, life-changing. That, that, that really can make a difference for everyone involved.

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Elisabeth W Burak: And we see that every day. Next slide.

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Elisabeth W Burak: And last but not least, well, there's many last but not least, I think we often think about, you know, Medicaid is a health insurance program.

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Elisabeth W Burak: And Medicaid in general has a lot of protections for out-of-pocket costs for families, and it has really been important, particularly for families with kids with special health care needs, lots of co-pays, might have coinsurance or other things.

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Elisabeth W Burak: And Medicaid really, doesn't… Families are less likely to hesitate getting the care that those kids need because they can afford it.

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Elisabeth W Burak: And allows those kids to be independent as adults, or get to school. And that's been… that's a really important piece of this as well, especially at a time when affordability is hard to come by. Next slide.

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Elisabeth W Burak: This is just another nod to avoiding family debt.

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Elisabeth W Burak: And this family in Wisconsin, in the first year of their child's life before they got Medicaid, depleted their savings, just paying for his care. That is why Medicaid is there as a backstop for families who need it.

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Elisabeth W Burak: Okay.

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Elisabeth W Burak: I'm going to quickly get through Medicaid financing and sort of what we're dealing with now. Next slide.

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Elisabeth W Burak: Okay, on to Medicaid financing. Next slide.

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Elisabeth W Burak: So, Medicaid is a federal funding source. It's… Medicaid's a federal-state partnership. Next… next slide, I don't think I see the next one.

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Elisabeth W Burak: And…

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Elisabeth W Burak: the… there it is. It's not subject to congressional appropriations because it's a financing entitlement. It's an entitlement in terms of benefits to all those who are eligible in the state based on the eligibility determined by states who run it.

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Elisabeth W Burak: And it's an entitlement to states in terms of the financing. It is open-ended financing, so for every person who is enrolled and getting services paid by Medicaid in a state, the federal government pays a matched percentage on an open-ended basis. It's called a

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Elisabeth W Burak: federal, Medical Assistance Percentage, FMAP.

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Elisabeth W Burak: And it varies by state based on their per capita income. Next slide. So the states pay a portion, and the federal government pays the rest. The minimum federal, matching rate is 50%. So in those relatively, higher per capita income states.

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Elisabeth W Burak: starting with Wyoming on the left, the federal government's going to pay 50%, and then it goes up, as high as in Mississippi, you've got nearly 77% of the cost that the federal government will pay.

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Elisabeth W Burak: There are exceptions to this. In some cases, there are higher matching rates for some services, or, like, the expansion population of adults that came about with the Affordable Care Act is 90% match for the states who adopted it. But in general, this is the basic FMAP, or medical assistance rate.

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Elisabeth W Burak: Next slide.

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Elisabeth W Burak: Because of this entitlement financing, and because healthcare is expensive for states to provide, and the federal government, Medicaid's the largest source of federal funding going into states.

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Elisabeth W Burak: So you'll see it eclipses, education and other federal funding sources going into states, and that's why when we talk about the kinds of cuts that Congress is making to Medicaid, you start to pull.

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Elisabeth W Burak: That slice of the pie down, what's that going to mean for state budgets and making sure we're continuing to care for the medical needs of our populations?

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Elisabeth W Burak: Speaking of which, we'll move on to threats. Next slide.

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Elisabeth W Burak: Okay.

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Elisabeth W Burak: So,

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Elisabeth W Burak: Part of the reason we're really doing this series is to help people understand where we are and what's coming with many of the changes, really dramatic changes that were made to Medicaid under the One Big Beautiful Bill Act, or as we also call H.R. 1.

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Elisabeth W Burak: But before we get to what's coming, I do want to say there was a lot of risk that the entitlement funding I just mentioned was going to be arbitrarily capped.

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Elisabeth W Burak: And that states would have to make up any of that cost or make up dramatic cuts, because they would no longer have that federal financing.

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Elisabeth W Burak: We also preserved that important pediatric benefit for kids.

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Elisabeth W Burak: And the 90% federal matching rate for the expansion population, which has been really important for states

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Elisabeth W Burak: Taking on and keeping the expansion to other adults.

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Elisabeth W Burak: And one thing that most people don't realize, or tends to get lost in the shuffle, is that Medicaid's actually a very popular program.

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Elisabeth W Burak: The public is supportive of it. The public didn't want cuts across party lines to Medicaid. Some… some of those surveyed wanted to actually increase funding for Medicaid, because it's

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Elisabeth W Burak: hard not to know someone in your life, or your grandparent, or others who are not relying on Medicaid for some or all of their healthcare. So there's a really strong… just despite some of the political rhetoric, there's strong public support.

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Elisabeth W Burak: Okay, next slide.

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Elisabeth W Burak: So, in terms of the major Medicaid provisions, and we can put a paper that we did that summarizes all of them, there are very many, but at the end of the day, what the law last year that passed did was

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Elisabeth W Burak: cut nearly a trillion dollars in Medicaid, arguably more the way it's being implemented, but about a trillion dollars over the next decade.

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Elisabeth W Burak: That is really taking, giving less cost to states, and it's shifting that cost of healthcare to the states that are running the programs.

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Elisabeth W Burak: Most of these TUTs, not all of them, but most of them target the states that have the Medicaid expansion.

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Elisabeth W Burak: Notably, new work reporting requirements that I'll talk… touch on.

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Elisabeth W Burak: It restricts states' ability to pay for their part of the match, you know, their 50% or less of the Medicaid match that they have to pay. It puts some restrictions on the ways that states can pay providers.

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Elisabeth W Burak: And it creates a lot more red tape and renewal barriers for those who might be applying or renewing their coverage. And last but not least, it rolls back some of the eligibility for lawfully residing immigrants or legal immigrants, and it really restricts most of those to those who have green cards.

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Elisabeth W Burak: with some exceptions, we're gonna do a whole webinar on this in two months, but it's… starting October 1, there will be a lot of…

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Elisabeth W Burak: Legally residing immigrants that no longer have access to this health coverage.

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Elisabeth W Burak: Next slide.

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Elisabeth W Burak: So at the end of the day, all of those things I just mentioned relate to a lot of cuts in the funding going into states. And the way the bill was designed, those cuts increase every year. So if a state's having a budget shortfall challenge this year.

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Elisabeth W Burak: It's likely to come back next year as these federal funding cuts get larger over time.

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Elisabeth W Burak: So with that, next slide, I want to take us back to that pie chart I mentioned with Medicaid. So on the left is the pie chart I showed you earlier.

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Elisabeth W Burak: a good chunk of the money, of the federal money in state budgets is Medicaid. But if you look on the pie chart on the right, that is the state dollars within states, across states. And as you'll see there, K-12 education is more than a third of the state money in state budgets.

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Elisabeth W Burak: And so what we get concerned about, particularly for kids with special healthcare needs who rely on K-12 money.

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Elisabeth W Burak: to make sure that they can get that free and appropriate education is, you know, potentially, as the federal share goes down in Medicaid, that K-12 money could be used to make that up, or any of the other pots of money.

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Elisabeth W Burak: And it really could create real budget concerns at the state level.

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Elisabeth W Burak: Next slide.

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Elisabeth W Burak: In the Medicaid system, states have a number of options to offset these federal funding cuts, right? If the federal funding goes away.

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Elisabeth W Burak: In Medicaid, they can close or cap enrollment, if they have that option. In some cases, they do, depending on the kid or the person. They could add red tape to make it easier… harder, even harder to enroll or renew your eligibility. They could reduce income eligibility or eligibility pathways.

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Elisabeth W Burak: There are a lot of optional pathways, including some we just mentioned. They could cut benefits or reimburse less for benefits, right? Lower reimbursement rates for providers, that's an option states have.

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Elisabeth W Burak: To a point, they could increase out-of-pocket costs for some of the families at relatively higher incomes.

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Elisabeth W Burak: Or, as I mentioned, one of our concerns is they could look at other places in the state budget to make up for those losses, or both.

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Elisabeth W Burak: For this reason, we're also starting to see some states think a lot differently, too, about maybe we need to boost state revenue, because we're really looking at some big budget holes if we don't think through this, and we don't want… we want to continue to take care of the health of our… our residents, our citizens.

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Elisabeth W Burak: Next slide.

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Elisabeth W Burak: So just a quick note about work requirements. You know, no child is going to be subject to work requirements, no child with special healthcare needs.

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Elisabeth W Burak: It is very much directed at adults in the expansion category, that was optional under the Affordable Care Act.

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Elisabeth W Burak: But we are concerned there are older youth that might age into and be enrolled in the Medicaid expansion.

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Elisabeth W Burak: And they might have to get exempt or comply with those work requirements, depending on, how their exemption is processed.

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Elisabeth W Burak: There are many parents and caregivers of children and youth with special healthcare needs that might be impacted. Now, caregivers are exempt, but again, how states are able to quickly manage those exemptions and make sure those go into place.

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Elisabeth W Burak: is a concern that we have, that in the states that have done it, they… folks have lost covers that did everything right, might have even been exempt, and so it's just a lot more red tape and confusion, quite frankly, in the states that are going to have them. Every state has to do this starting in January 1.

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Elisabeth W Burak: It's only states with the expansion, but I say I want to make it clear that their confusion has made it so that in other states, there's a lot of confusion around these as well.

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Elisabeth W Burak: And last but not least, we're concerned that as adults lose coverage because of these new work requirements, their kids could incorrectly lose coverage, right? And we see that when parents gain coverage, kids are more likely to also increase their healthcare coverage.

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Elisabeth W Burak: We call it the welcome mat effect. We're also worried about an unwelcome mat effect, that incorrectly, parents might not realize their kids are still eligible if they're not, or there's other confusion around this.

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Elisabeth W Burak: And we're already seeing Medicaid enrollment for kids decrease.

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Elisabeth W Burak: And we haven't even started yet. Next slide.

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Elisabeth W Burak: I mentioned there are a lot of exemptions to these work reporting requirements for those who are enrolled in the Medicaid expansion in those states that have expanded.

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Elisabeth W Burak: And our concern is those exemptions, some are going to be easier to process than others for people, for adults who have.

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Elisabeth W Burak: medically… medical frailty, or other types of, not as easy to sort of define conditions. There's a lot of question about exactly how states are going to process that. It won't necessarily be just on a diagnosis.

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Elisabeth W Burak: But even for those who are clearly exempt, like pregnant or postpartum women, you know, I think we… it remains to be seen how clear the process is going to be to making sure those folks are exempt in a timely way.

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Elisabeth W Burak: Next slide.

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Elisabeth W Burak: We have some tips about what you can do. We're gonna have lots of resources in the chat, and lots of organizations, like Family Voices, who we'll be talking to, who are trying to educate lawmakers about this.

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Elisabeth W Burak: But mainly, I'm gonna move along to our panel, because I think that's where, we're gonna have more of a…

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Elisabeth W Burak: Robust conversation about what we can do.

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Elisabeth W Burak: Okay, I think we can take the slides down, and if everybody can… our panelists can turn their…

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Elisabeth W Burak: Camera's on? Oh, lovely. Okay.

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Elisabeth W Burak: It's great to see everyone!

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Elisabeth W Burak: Okay.

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Elisabeth W Burak: I just did a long tour of the facts, and a lot of the moving parts in Medicaid.

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Elisabeth W Burak: But particularly for Alysa and Casey as parents of kids with special healthcare needs and advocates who work with parents.

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Elisabeth W Burak: I want to hear from your perspectives, how would you describe Medicaid and the value of Medicaid for children with special healthcare needs?

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Kasey Dudley: You want me to go first, Alisa? Or… Right. So…

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Kasey Dudley: So we're in two different states, and you may have two different responses, right? Because it looks different depending on where you live. And yes, the funding does come from the federal government, but it goes into different parts when it finally reached the individual. So if you look at it, and one thing that I didn't tell you guys that I just realized is that not only am I a parent, but I'm also a caregiver.

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Kasey Dudley: of my sister, who is an adult, that also has a developmental disability attached with mental health diagnosis as well, right? So there's other things that are carried on top of that as well.

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Kasey Dudley: So, understanding and knowing the system is an understatement. And…

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Kasey Dudley: From birth, right, to adulthood, there's this ladder, or there's this path.

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Kasey Dudley: that you have to continue to stay on or continue to climb, starting at early intervention, right? So at early intervention, Medicaid, can support and give coverage to children that are receiving early, intervention services, and then they transition into education. And when IDEA kicks in, it ensures that the child receives the services.

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Kasey Dudley: as long as they are properly evaluated and found eligible, they receive services, and then it's based on that evaluation of the type of services that they're receiving. So while the IEP is going to conduct the services that they receive to get access to their free and appropriate public education, in the background, you have your Medicaid services still kind

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Kasey Dudley: of acting in a way that they can access those medical services, right, that are now, possibly given in school, possibly given out of school, but they're not on the educational format, because you now have flipped into education. And that is the path that you'll stay on until you get into high school, right? When you start transitioning

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Kasey Dudley: and planning for the next step. New Jersey also has a program called the New Jersey, Children's Systems of Care. And to be eligible for the Systems of Care, you basically, there is no…

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Kasey Dudley: no real eligibility other than, you know, being a child of developmental disabilities. You become kind of pre-qualified for our Division of Disability Services. And then you kind of move on, and you continue with services there, whether it's through camps, or it's through, programming with.

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Kasey Dudley: socialization, or if they come into your home, and do home-based services that would… could possibly be covered by Medicaid. It's continuously transitioning, continuously. And you have to stay on the ball of understanding that process, because when high school hits, and we talk about post-secondary services, now we're talking about, actually.

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Kasey Dudley: being approved and qualified for DD services and beyond, right? And those services, you do absolutely need to be approved by Medicaid for those doors, for those gates to open. So…

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Kasey Dudley: It really is important. A lot of this comes down to, you know, what you do and don't know, and how much you pick up, because no one is gonna pull you aside and teach you this information proactively, because they're nice.

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Kasey Dudley: Maybe some of us would. But it's not a storybook, it's not a classroom, but the information is out there, but the system is very complex, and parents at the moment are struggling. We're looking at

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Kasey Dudley: a huge removal or a collapse in our systems and our services based on our federal government. You know, our,

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Kasey Dudley: you know, Andy Kim, Senator Andy Kym, Congressman Andy Kym, excuse me, he has been championing, you know, these programs and services at the federal level so that these individuals can be supported from birth to 26.

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Kasey Dudley: Right? So there is no mountain to climb, there is no ladder, there is no pathway. If you are born with a developmental disability, and you require services.

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Kasey Dudley: and you're approved for those services, for the lifespan, you will continue to receive them, because

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Kasey Dudley: you're more than likely gonna need those services throughout your lifespan, right? And that's really what we were trying to get parents to advocate for, to be supportive of, because ultimately it's gonna hit them directly. I think we need to do a little bit more due diligence of getting the information out there, educating parents, and not allowing this to kind of fall on deaf ears, but so far it's been…

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Kasey Dudley: a good job, but I think we can do better.

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Kasey Dudley: Stacey, I love that point, particularly because, Congressman Kim's bill builds on the strengths of Medicaid.

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Kay Johnson: and doesn't pretend that somehow we're gonna squeeze kids into Medicare, it builds on the strengths of Medicaid, and thank you for bringing that up.

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Kasey Dudley: Yes.

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Allysa Ware: Yeah, and just.

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Elisabeth W Burak: Oh, sorry.

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Allysa Ware: Sorry. And just to put some finer points on what Casey shared, I, you know, as Kaye shared, the impetus for Family Voices existence

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Allysa Ware: was ultimately to ensure that families have access to the services that allow their children and family to thrive, right? So, that becomes important because Medicaid is a key

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Allysa Ware: component necessary for this to happen. And so we know that it actually… Medicaid actually facilitates what I refer to when across our network of 64 organizations across the country, we all refer to as

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Allysa Ware: choice, right? So, when we talk about finances, Medicaid makes the difference between being able to choose to be a paid caregiver.

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Allysa Ware: and be able to stay in the home and care for my child, versus being able to have the adequate in-home supports and nursing to be able to go out and be in the workforce. All of a sudden, here is this system that allows me to make that choice as a caregiver.

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Allysa Ware: When we talk about transportation, I'm able to either make the choice to make modifications to my vehicle, or be able to get the access to funding that would let me get my child to the medical services that they require.

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Allysa Ware: It allows for families to access, necessary diagnoses in order to get the services that they need in the education system, in the community, in order for them to thrive. Life-saving medications.

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Allysa Ware: And allow them to stay in the community where they live, and this becomes even more true, I think, as Kasey actually highlighted, as they move through the lifespan. Many times, and a lot of people don't know, Medicaid can be a payer, for housing services, for those that have disabilities, that are moving into adulthood, that they're able to go out and live and work and be a part of the community that they've grown up in.

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Allysa Ware: And so, to me, it actually is one of the key mechanisms that allows families to actually reach the level of quality of life that matters to them. And I think that's important of what we stand to lose if we see the cuts to Medicaid happen.

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Elisabeth W Burak: Thank you, Alyssa. That's a really important sort of point about what it takes to keep families together in their communities and help

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Elisabeth W Burak: Move kids and families towards having the most choice they can, having the independence that they can in childhood and adulthood.

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Elisabeth W Burak: Which, you kind of walked me into a conversation about Ohio, about sort of family caregivers is an option for certain children with special healthcare needs whose families can be supported for being that caregiver, and I… you're in Ohio, too, so I want you to weigh on it, too, but Caitlin at Groundwork Ohio.

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Elisabeth W Burak: Who is their policy lead, recently had some of the state policymaking come up against potentially removing this option, so I wanted Caitlin to talk a little bit about that.

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Elisabeth W Burak: And sort of how that sort of rhetoric, and what… how that came about, and sort of what the advocacy was like to… to push back.

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Caitlin Feasby: Yeah, thanks, Elizabeth. So I am with Groundwork Ohio. We're an early childhood-focused organization, really centering on prenatal period through age 5, and so, that context is important because earlier this year, I think earlier being, like, January 1st of 2026,

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Caitlin Feasby: Ohio was quickly caught up in the, broader, narratives around program integrity concerns for publicly funded childcare that were, starting and were really heating up in Minnesota, and then quickly, worked to kind of encapsulate Ohio as well. And we saw really quick activation from advocates, from childcare providers, but also from our government agencies.

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Caitlin Feasby: So we have strong early childhood governance structure here in Ohio through the Ohio Department of Children and Youth.

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Caitlin Feasby: They responded really quickly, and they also did everything in their power to sort of get ahead of that narrative, and to provide the legislature with evidence.

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Caitlin Feasby: that could, point to the places where the narrative around program integrity was being overblown in the media. They set up a random sample of 400 publicly funded child care providers, really to understand where the concerns are, and to furnish this evidence that it's being addressed appropriately. And so, we were in the midst of those fraud conversations happening on that side of things.

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Caitlin Feasby: And then, unfortunately, it took a little bit of a different trajectory when it started reaching into the Medicaid space, and took, I think, a lot of folks by surprise.

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Caitlin Feasby: where there were some conversations that were happening around Medicaid program integrity that started in a really measured and targeted fashion, really around creating electronic visit verification, sort of strengthening some of those benchmarks for verifying that visits are happening for home-based care providers.

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Caitlin Feasby: evolved into something that was much more onerous. There was a substitute bill that was adopted into that, you know, that narrow, targeted approach, that then, eliminated compensation for family caregivers of Medicaid beneficiaries.

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Caitlin Feasby: So that sort of happened overnight and caused quite an upset. It required a lot of quick activation and quick coalition building and activation of all different kinds of partners, and so Groundwork Ohio was part of these conversations as we recognized that there was a real implication for this to impact young children with special healthcare needs, those that are medically fragile, those that don't have

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Caitlin Feasby: any other options for caregiving. And the reality is that families with children with special healthcare needs in our state are already struggling to find care. We had a survey come out, it feels like it was recent, but now I think it was maybe early 2025, but still the most recent survey that Groundwork Ohio conducted found, that of the families that we polled, I think it was nearly 800…

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Caitlin Feasby: Families, 60% of those families that have a child with a disability were not able to find appropriate care for their child.

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Caitlin Feasby: And that's just on the child care side for kids with disabilities. There's families that are also reporting, repeat challenges finding respite care and direct care workers and other home and community-based providers. And so much of our state is considered Appalachian and rural, so

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Caitlin Feasby: just not a lot of support that is out there. Family caregivers really are an essential, stopgap to provide care for their children in their homes, and especially when their children require a good deal of care, high levels of care, it undermines, a lot of times, a parent's ability to be in the workforce, and so that, compensation through Medicaid for their,

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Caitlin Feasby: providing care for their child is really important. So, we worked alongside other advocates in the disability community, but we were also really fortunate to be able to activate our, we call it our Family Action Network, and it's a really, robust, geographically diverse, stakeholder group that's in Groundwork Ohio's network of parents of young children, that 0 to 5 range.

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Caitlin Feasby: That we maintain strong relationships with over time, so that when they're

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Caitlin Feasby: times like this, where we want to get family feedback, we want to bring them to the table, we want to align our talking points with the realities of what Ohio families are experiencing. We already have those authentic, trusted relationships with these families, and so we reached out to our Family Action Network, we were able to get some really great quotes that we could use as, in our witness testimony, we were able to activate other families in the Families

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Caitlin Feasby: Action Network to, also participate as their own independent witnesses for what this bill could potentially do, the impact it could have on their caregiving experiences at home with their children. And, ultimately, the provisions, those really harmful provisions, were struck from the bill.

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Caitlin Feasby: But I share all that context because it's something that, that truly

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Caitlin Feasby: came out of the clear blue sky, and it flared everything up. It was a very emotional, very difficult, series of hearings, that brought hundreds of witnesses in person to talk about how detrimental this would be. And anecdotally, there were also representatives in the committee who were left in tears just hearing all of this witness

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Caitlin Feasby: And so, really important to be able to have those strong relationships and those diverse coalitions to activate when there are opportunities like this to do so, to bring all those folks to the table.

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Caitlin Feasby: As far as what we are anticipating at this point, I don't think that these conversations are over. That all sort of landed, back in the original bill's space, where they were strengthening the electronic visit verification. That is where that bill landed. That has been signed into law at this point without those harmful provisions for family caregivers.

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Caitlin Feasby: However, the chair of the House Medicaid Committee is on the record as saying that this, that that bill was phase one of, of multiple of, or what they, see as a series of phases to continue addressing, Medicaid program integrity concerns. And so, we continue to maintain those relationships with all those folks that we've been activating with and

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Caitlin Feasby: And continuing to build those coalitions and maintain those strong connection points so that whatever Phase 2, 3, and beyond might bring, that we have all the right people at the table and ready to share their experiences.

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Elisabeth W Burak: Thank you, Caitlin. That was about a 48-hour turnaround for that testimony and getting folks… yeah, I… and I…

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Elisabeth W Burak: I think it's so instructive of where some of the conversation is right now, because we've seen, even after H.R. 1, there's a lot of conversation about fraud in these public programs that serve families.

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Elisabeth W Burak: Including Medicaid. And I will say, no one here on this call wants fraud in Medicaid. I don't think anyone wants that. There are big systems set up to… to…

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Elisabeth W Burak: combat fraud in states, and the research shows that more often than not, the fraud is by healthcare providers and not necessarily beneficiaries of Medicaid.

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Elisabeth W Burak: And, you know, I think there's a… there's a debate to be had about where to put resources in combating that fraud, but it has meant there have been a lot of…

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Elisabeth W Burak: conversations about what this really means for families, and you can't… I think you had a great line in your testimonies, we can't do this with a sledgehammer. This needs to be nuanced, and we have to combat fraud in very specific ways, not as a blanket change in policy.

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Elisabeth W Burak: And I think that was, hopefully the only fire drill on this, but I know it'll continue to be a conversation. Alisa, you were talking a little bit already about.

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Kay Johnson: Can I jump in?

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Elisabeth W Burak: Elisabeth…

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Kay Johnson: For a moment, just to say.

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Kay Johnson: I want to go back to that through line from the SSI time.

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Kay Johnson: This wasn't… this wasn't a couple of people, highly conservative, perhaps a little on the edge in Congress. This was Nicholas Kristof. This was the Boston Globe, accusing families of coaching their children to cheat

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Kay Johnson: school… on IDEA money and on SSI money. That's how big a firestorm this kind of crap, if you'll bark.

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Kay Johnson: for lack of a better word, can really get. So, the New York Times and the Boston Globe top flight reporters

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Kay Johnson: Accusing families. I just think we… we can't… we have to be very vigilant.

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Elisabeth W Burak: Well, that's why I think the work that all three of the panelists are doing to really engage families in these conversations is so important. And I want to turn it to Alisa, because I know you have more to say about this, but I want to get your reactions as well.

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Elisabeth W Burak: Or anyone's reactions.

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Allysa Ware: Yeah, I mean, I think the work in Ohio is indicative of the work that needs to happen across the country, right? I think that we are seeing a shift in the narrative around, who deserves a good quality of life.

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Allysa Ware: how does that actually happen? And… and then who should fund it, right? So this is a part of all of the debate. And…

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Allysa Ware: at the heart of that that I want to bring into the room that I think is important to the conversation is we spent so much time, increasing visibility of the special healthcare needs and disability community.

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Allysa Ware: Of really helping the country understand the needs that need to happen and how we need to show up as a country and as a system for those… for the community.

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Allysa Ware: And we are now rolling that back with… and so when we dehumanize an entire population, when we… when we say that, you know, they…

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Allysa Ware: their quality of life is not going to be good. We take ableist approaches to actually how we think about it. We actually can then start to do all kinds of things, including closing down the funding of needed medical services. And in order to do that, we have to

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Allysa Ware: Invoke fear.

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Allysa Ware: we have to say that somebody's taking something from somebody. And this is the narrative that I think is continuing to come up across the country around, there's fraud, and we need to, you know, not be spending as much money, when the reality that we know, and I can talk about my own household, is

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Allysa Ware: Not only is it not fraud, but often families still aren't getting all that they need in order to care for their children. That Medicaid often doesn't actually cover all of the expenses, you know, for my stepson, that his wheelchair alone costs $60,000 a year. And you say, I can only get it every 5 years, even though, as a child, he's growing bigger than that… faster than that chair can actually accommodate

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Allysa Ware: Right? So, we know that not only is there not fraud by families.

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Allysa Ware: But actually, that families actually need a more expansive program that's actually going to cover and meet their needs. And we need more voices in the conversation to really

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Allysa Ware: do the work very similar to what happened in Ohio to drive that message forward and say that everybody deserves to live the life that they want, and it's going to take investment, and coverage in order to do that.

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Kasey Dudley: I have to agree there, especially about the way we show up.

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Kasey Dudley: And give that messaging, not just to the community of families with children, special healthcare needs, but anyone that is out there that understands, that wants to understand, and that needs to understand why this matters so much, and how this is going to affect us, you know, just as a people.

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Kasey Dudley: 100%.

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Kasey Dudley: And, you know, in my last comment, I said, I think we're doing well, but I think that we need to do better. And that's the better that I mean, right? We really need to get a gauge on our communities, and we always want to kind of jump behind the sexy thing that is happening, whether it's in pop culture or pop politics.

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Kasey Dudley: But… but this is… this is not that, and, this is definitely a major need, for… for so, so many families, across the country, and, you know, so many families of color.

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Kasey Dudley: So many families of color, and…

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Kasey Dudley: It's happening at a rapid rate, and it's not a discussion that is happening,

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Kasey Dudley: constantly as others that are happening. So, yes, I will kind of put my face out there and be the one to say it. It needs to be a little bit more camaraderie, a little bit more conversation, and a lot more community advocating,

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Kasey Dudley: And organizing around this.

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Elisabeth W Burak: Kasey, before you leave, because I know you have to leave a little early.

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Kasey Dudley: I'm good, man, I'm parked, I'm good.

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Elisabeth W Burak: Oh, you're parked! Okay, we'll keep you. I've…

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Elisabeth W Burak: Oh, because I'm going to move to what you all are most concerned about, or what you think is most at stake, but before that, I wanted to touch a little bit on…

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Elisabeth W Burak: Anything else you might want to add on the way Medicaid helps schools, or supports healthcare in schools for a lot of kids, or doesn't, but that, you know, that… Or doesn't.

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Kasey Dudley: I mean…

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Elisabeth W Burak: together.

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Kasey Dudley: Right, it… we definitely work together, clearly. I mean, you have the SEMI program that's there. You know.

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Kasey Dudley: The… what's happening is they're basically saying that, you know.

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Kasey Dudley: parents can take advantage, or can definitely, you know, sign for consent to receive those services. It's not… it should not affect, their services when they go outside of school. However, it's not a necessity. It's not something that they're mandated to be a part of or to opt into for their kids, and I don't think they knew that. Again, education is a big part of this.

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Kasey Dudley: I think also, when we talk about the transition piece, and moving forward, we need to educate on Medicaid and how this coincides with the individual that will soon be an adult. Because Medicaid will be the stream of

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Kasey Dudley: Finance that they have to depend on, that they will depend on, for so many different… so many different needs.

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Kasey Dudley: And it's not… it doesn't matter, what your tax bracket is. It doesn't matter what your zip code, or, you know, your social background is, right? This is just the way our system is set up, and these are going to be the needs for our children, and we need the schools, the communities, like, we need to start educating about this process, because they come out.

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Kasey Dudley: And students alike, not knowing what their rights are, not understanding where their services are going to come from, or how to access those programs.

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Kasey Dudley: Yeah, there's a lot of…

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Elisabeth W Burak: work to be done, but I.

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Kasey Dudley: Yeah, fun.

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Elisabeth W Burak: It's both and.

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Elisabeth W Burak: Well, on that thread, and you all might have already said it, but I just want to get a sense of, before we open it up to… we have lots of questions in the chat, so we'll go there, but what are you all… what do you all see as most at stake with these Medicaid cuts on the table in states and for kids with special healthcare needs?

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Elisabeth W Burak: And if you already said it, that's fine, we can… That's…

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Allysa Ware: I'm happy to start us off. I definitely think the trade-offs that families will have to make.

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Allysa Ware: And that is the umbrella, right? And the trade-offs are innumerable.

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Allysa Ware: From choosing whether or not I can afford the medications that my child needs, or I put food on the table.

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Allysa Ware: If it's, am I able to stay in the workforce? I mean, I think about my own situation where I didn't have access to Medicaid. I left the workforce when my daughter was 6, because I was trying to get a diagnosis for her, that I'm battling the system to actually try to move forward. And my household, I mean, half of its income dropped.

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Allysa Ware: And that had a profound impact on my own family. And I know the privilege that I walked with to be able to take that hit, and a lot of families don't have that.

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Allysa Ware: So, to see the infrastructure kind of crumble from under them and have to make those trade-offs around where they live, what they eat, what the access to medications are, etc, is… I mean…

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Allysa Ware: that fear is… is pressing and real, if we don't have a… if we see major cuts in Medicaid. And so, I can't underscore that enough, that it is going to… to really reduce the choice.

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Allysa Ware: as well as access, and when those trade-offs have to be made, they can cost people their lives. And I think that it's important for us to understand the real implications of that.

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Caitlin Feasby: I think I echo my panelists, and what… I mean, what comes to mind for me is that I think Ohio is a pretty good example where you don't have to…

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Caitlin Feasby: take Medicaid away from a child to really have significant disruptions in their care, and if you eliminate those supports that allow a child to stay safely in their home, in their communities,

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Caitlin Feasby: the least restrictive environment, you… you can fundamentally change

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Caitlin Feasby: the child's access to the care that they need, just by making those tweaks. And, you know, I also think a lot about

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Caitlin Feasby: Families don't experience, their child's needs in systems. They experience their child's needs in these accumulative effects where they're trying to help their child to be as successful and as happy and healthy, and to help them achieve the best well-being that they can.

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Caitlin Feasby: all at once, and so I think that we also…

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Caitlin Feasby: by undermining a really solid Medicaid structure and infrastructure, we're also putting families in this place where they have to navigate 5 different systems at once. And, you know, when I think about what is Medicaid but a system that is the sum of its parts, that has to have really strong providers and,

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Caitlin Feasby: workforce, and there have to be… the services have to exist in the community for the child to really have access to that full continuum of support that they need to be successful. So I would say those are the things that

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Caitlin Feasby: That keep me up at night when I think about, some of the things that we've been talking about in Ohio's Medicaid program, and some of those conversations that might be around the corner.

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Elisabeth W Burak: Okay, I'm gonna turn to a few questions in the chat, and one of them's gonna get to my final question, which is, what can we all do in our final statement from each of you, but…

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Elisabeth W Burak: One of the pieces, Joan Elker from CCF asked if each of you could comment on the claims by proponents of H.R. 1 and the One Big Beautiful Bill Act.

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Elisabeth W Burak: They claimed that they would not touch children or people with disabilities. Those cuts are not going to hurt children and people with disabilities. I would love your take on that.

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Elisabeth W Burak: statement.

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Allysa Ware: So I think we can learn a lot from the unwinding that happened after COVID.

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Allysa Ware: And fam… you know, people weren't supposed to be impacted that actually are eligible, and yet people were disenrolled from systems. And what it took to get them re-enrolled

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Allysa Ware: The process and the red tape and the barriers, was…

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Allysa Ware: insurmountable at Family Voices. We had the opportunity to reconnect over 2,000 families to Medicaid after the unwinding, through the efforts of the Family to Family Health Information Centers across the country, and that was no small undertaking. The wait times on phones, the misinformation with communication and letters.

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Allysa Ware: If… In the best-case scenario, of course that would be true. However, we know that

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Allysa Ware: the systems actually don't work that way, and we have a lot of evidence and support to understand that, and so I do think that

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Allysa Ware: while that sounds good on its face, the reality that we know is that many families are going to be impacted, and while, yes, they will eventually get their services back, what happens in the meantime when the nurse stops showing up and the parents can't sleep and they're not getting the services that they need? And so, I… I say, show me the process that's actually going to ensure that that does

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Allysa Ware: that that is true, and I don't think we have one.

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Elisabeth W Burak: That's a great example. Okay, Caitlin, you looked like you jumped on.

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Caitlin Feasby: I, I think that that was a really great answer, and I think also,

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Caitlin Feasby: I wonder which children won't be affected, especially when we think about

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Caitlin Feasby: Immigrant children and threats to, whole families,

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Caitlin Feasby: I mean, which children are we expecting not to experience the implications of these changes? And…

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Caitlin Feasby: And yeah, would just, underscore, again, the point about that whole continuum of services and supports that, you can say on paper that children still have access to Medicaid.

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Caitlin Feasby: Broadly, but do they have access to the medical equipment and all of those other things that they really need to thrive?

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Elisabeth W Burak: I think I always tend to add, as a biggest picture example of this, I mean, if you take a trillion dollars out of the healthcare system, that's gonna affect a lot of people.

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Elisabeth W Burak: But I think we're all concerned about the ways that these cuts could hurt

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Elisabeth W Burak: Everyone, but particularly children and kids with disabilities and pregnant women and others.

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Elisabeth W Burak: There are so many great questions, and I said if we don't get to all of them, we will send them out in a Q&A afterwards.

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Elisabeth W Burak: there was a question about the Katie Bekettget application process, and are there any efforts that you all know of to revise the application to be more strengths-based and anti-ableist and family-focused?

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Elisabeth W Burak: Is that something that you all have seen, or is coming up?

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Kay Johnson: I want to be the hard-nosed person on that question. I didn't want to type it, but I do want to be the hard-nosed. We're already in a situation where our policy makers do not want to help families and children with disabilities. They are just going to build the hurdles higher. They don't want to hear from strength space.

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Kay Johnson: They want to hear how badly is this child damaged, and are they damaged enough, and visibly damaged enough, and provably damaged enough, that we are willing to consider them deserving? And that's ugly, but it's real, and I know Alyssa will back me up on this one.

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Allysa Ware: I absolutely agree. I will say, when I was doing state work, before I came to the National Families and I was working with families one-on-one, I would say, I need you to hear me. I need you to… I need you to write down the worst possible day imaginable.

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Allysa Ware: Because that is what you are going to have to put down, and it doesn't feel good, and it doesn't… and it… and so empowering families to understand

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Allysa Ware: how to actually get the services that their child needs, that I… to answer the question, I don't know of any efforts, and I don't know, at least from my time on the Hill and working with, and… and talking to lawmakers, that

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Allysa Ware: sadly, there would be an appetite to make those changes and maintain or increase funding for Medicaid. I think it would actually shift

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Allysa Ware: whether or not we need as much money in it or not. And that's actually not where we want to go. So, it… it is ableist, and it is sad,

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Allysa Ware: And how do we actually prepare families to understand the… where we have to go in order to get the needed services?

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Kay Johnson: And it may be that we can set up that expectation for the providers.

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Allysa Ware: Exactly, yeah.

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Kay Johnson: The pediatric providers to… to…

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Kay Johnson: Channel Paula Duncan and others, and, and be strength-based. Do it on that side, but get that eligibility based on the needs.

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Elisabeth W Burak: That's a good point.

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Elisabeth W Burak: That's a great point. Well, on that note, I want to get from each of you, sort of, thoughts about how folks can get involved. Lots of range conversation, lots of things to be worried about.

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Elisabeth W Burak: Lots of work to do to meet the vision we all see, like, was just articulated in that question, but also a lot of work to keep what we've got, and hopefully then keep building. So what… what can folks do to get involved? What… what do you see as opportunities?

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Caitlin Feasby: I'm happy to start. I think,

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Caitlin Feasby: we can't… from the groundwork perspective, and what we've learned along the way, is that you can't wait until a policy is at a crisis point to bring families to the table. They have to be at the table, in the conversations, helping to shape the conversations as much as possible from the get-go, and that they should really

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Caitlin Feasby: be reached early and often, and it requires that ongoing, authentic relationship building with families before you ever reach that crisis point. And so, to the extent possible, if there are other advocates on this call that are thinking about

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Caitlin Feasby: how, you can ready yourselves to, step in and address these challenges if it's something that is currently affecting your state, or you anticipate may affect your state. I think that's the number one thing that comes to mind for us, and has been the most powerful way to approach and, undermine the

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Caitlin Feasby: accusations around the Medicaid program integrity as it relates to families who are genuinely just trying to meet their kids' needs.

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Caitlin Feasby: And I think as part of that, too, part of what we really try to do to help families see themselves in the work is to, dismantle as much of the jargon as possible. I think that Medicaid

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Caitlin Feasby: seems like such a behemoth, complex system, and certainly it is. I think many of us on this call are at different stages of understanding all the nuances of the Medicaid system.

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Caitlin Feasby: And by providing education to families, that really breaks it down and doesn't require them to be, the utmost experts in all that complicated Medicaid policy, but really to help it to be as understandable and actionable as possible really helps to build that table and bring families into the work.

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Allysa Ware: Yeah, I want to build on what Caitlin is saying. I think that is where the immediate piece is, right? Bringing forward the lived experience of families. But I also want to honor that what we are seeing, certainly at Family Voices National, are some families are scared to talk.

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Allysa Ware: some families are scared to engage. They are worried from ICE being a part of, you know, coming after them, to retaliation and loss of services, and we see families certainly turning into other families.

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Allysa Ware: And so, I would say a couple of things would be my recommendation. If you are a family, bring a family, right? They trust you, and sometimes going together can actually help bring a family who might have been more hesitant and worried to be a part of the conversation and actually move things forward.

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Allysa Ware: But the other part is that if you are a part of an advocacy organization, or you're doing this important work, there are other ways that families don't have to visibly be a name on a piece of paper, or their face out there for them to be a part of your work. And so, how do you think about honoring that?

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Allysa Ware: So that they feel safe.

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Allysa Ware: they trust you, and you'll carry their message forward without them feeling the risk. And so, I think it's important to remember that there are multiple ways to engage, understanding where people are coming from and meeting them where they are.

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Elisabeth W Burak: Thank you, Alyssa. That's a great point for all of us who love and want to support families in other ways and can stand up as advocates.

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Elisabeth W Burak: Kasey, anything to add on… What you think can be done.

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Kasey Dudley: Yeah, I think there's a few things that…

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Kasey Dudley: I think there's a few things that can be done, and I think a lot of the things that we spoke about, earlier today… I'm trying to find my camera… we spoke about earlier today, especially, you know, just having information readily available for fairings, and gearing up, right, to educate them.

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Kasey Dudley: You know, I know I sound on and on like a broken record, but, you know, these are…

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Kasey Dudley: I think the backlash of repercussions of what happens if we don't do it is the things that we really are going to have to, like.

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Kasey Dudley: think about before we, you know, when we move, or while we move. So, you know, the education, of course, we want to make sure that we're getting, you know, the information

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Kasey Dudley: out to our families in a timely manner. We want to make sure that families understand what their rights are, but we also want to try to energize these parents, energize these families to go to the next level, right? If there's… to their state, or to their federal government, so that they can ensure that these types of things kind of have a buck that stops, and it stops on their behalf.

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Kay Johnson: That… that really made me… that fed right in, Kasey, to what I… what I was sitting here thinking. So, I was in… in… in 19… let's say 1980, 81, I was a child care worker.

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Kasey Dudley: Right.

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Kay Johnson: I was a minimum wage childcare worker. I was, I was working with children who had special needs and mainstreaming children into childcare settings and all that. I was also a women's rights advocate. And I was in my… doing my work in my community. I got so enraged.

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Kay Johnson: about what the Reagan administration was doing. I said, I can't do it this way anymore. I can't do it a handful of families every year at a time. I need to go do something that stretches more, and I need to get my skills, and I need to go do advocacy.

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Kay Johnson: I know there are hundreds, if not thousands, of people like me

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Kay Johnson: out there who want to do more, give more, people like you who want to run for the school board, people like Alyssa who want to move from their family to their state to the national organization. Let's bring them on. Let's bring them up, let's raise them up and find the way to connect them to the work.

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Kasey Dudley: Or we will be moving right back to the type of advocacy, Kaye that you did, your friend did, right? I mean, like, we're moving in that direction.

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Kay Johnson: Yes.

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Kasey Dudley: And so my favorite… my favorite saying is, what are we doing? What are we really doing?

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Kasey Dudley: And if you can't see.

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Kasey Dudley: yourself actually moving towards, and you see more moving away from, we have a problem. We have a real big problem. We need to fix it, because right now, that's the state we're in. We're moving away from, instead of towards, right, the way that things need to be, and quite frankly, you know, are entitled… are entitled to be, based on IDEA.

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Elisabeth W Burak: You're huge.

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Kasey Dudley: Digress, I'm sorry.

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Elisabeth W Burak: You're not digressing.

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Elisabeth W Burak: We're not gonna end on that, because I have a few more questions, but I… we could have. We could have.

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Elisabeth W Burak: a few things. I think…

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Elisabeth W Burak: I just want to sort of think about, from each of you, and we'll sort of wrap up. There are a lot of great questions. I think a lot of them we can answer individually and do a Q&A document, because some of them are very specific, but a lot of them are around how can we combat this, and like we were just talking about.

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Elisabeth W Burak: So, for all of the folks on this call who are trying to sort of figure out where they can do something or how to get involved, for each of you, what do you think is one next step that they could take?

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Elisabeth W Burak: To get involved.

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Elisabeth W Burak: So they don't have to run for school board, but maybe…

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Elisabeth W Burak: Look up one of these great organizations we put in the chat.

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Caitlin Feasby: I would love to encourage folks to

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Caitlin Feasby: be engaged and informed voters. I think that that's really important, and

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Caitlin Feasby: To really pay attention to the policy positions of the candidates at every level of government, and to really think about how, their policy platform can impact the things that you care about, and then make a plan to… to vote.

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Caitlin Feasby: I think also, if you are… depending on where you come to this work, if you're, you know, that's… that's an easy way to engage, but…

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Caitlin Feasby: You can also look up who represents you in your community at the state level, at the federal level, and send emails, make phone calls, send letters, send information.

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Caitlin Feasby: Right now, Congress is on break. It's a good time to do in-person visits while they're in their districts to invite them to see the work that you're doing. There's a lot of different ways that you can increase the exposure of the important work.

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Caitlin Feasby: That you do, and the families that you serve, and there's a variety of entry points to do that, whether you are meeting them in the community, they're coming to a program that you work with, or if you are setting up a meeting and, and talking with them about the issues that are important to you.

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Allysa Ware: Yeah, I'll just… I actually, in preparation for this, I pretty much said the same thing, Caitlin. Contact your local, state, and national legislators, and tell them your story. They want to hear from you. When I'm on the Hill, they're like.

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Allysa Ware: their staffers are like, you need to have people calling us. Bring our phones off the hood, give us letters, send us… it matters, it makes a difference, and that is what they then use to stand on and drive forward towards the change that needs to happen. I would be remiss if I didn't say I would encourage everyone to contact your local Family to Family Health Information Center.

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Allysa Ware: Across the country, there's one in every single state, five territories, 3 tribal nations. If you don't know where it is, go to FamilyVoices.org, you can click on the map, we'll tell you exactly who you reach out to. That's where you can go to connect to families. If you are a family, you can connect to other families. And if you're doing this important work, they can be great partners with you to do the work at the state and local levels.

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Allysa Ware: I, I think that those are critical next steps for everybody that's listening.

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Kasey Dudley: Agreed. Same thing, I was just gonna… I was just gonna add to add your local family, partners, it's… give you huge, huge, huge support, but definitely on the Hill, they want to hear from us. They do.

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Kasey Dudley: The accessibility is not as hard as you think.

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Kasey Dudley: You really do just need to try, and make sure that you reach out, and if you need someone to guide you, there is definitely someone to be there to guide you, and if you link up with your family partners, then you already got a front line with you, so…

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Kasey Dudley: Agreed a thousand percent.

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Elisabeth W Burak: Kaye, do you have any final…

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Kay Johnson: I… I have… my… when I do advocacy training, I have three… three main points. One is inform yourself.

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Kay Johnson: Sign up from some newsletters, from some trusted national organizations, so you can keep up with what's going on.

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Kay Johnson: Inform others, then you, like, tell your neighbors, tell your… tell your representatives in Congress and in the state, just, like, gotta then start talking about it. And then the third one is just, like, organize, join with others, you know, get involved in a group where you feel supported and you feel, that you can take larger action in some way. There's a way to do all three of those for

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Kay Johnson: most people.

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Elisabeth W Burak: And we have a vision of Julie and Katie Beckett to follow as well, in all this important work.

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Elisabeth W Burak: I am so grateful for everyone for being on this today, and to our partners, Kima and Kay, and Family Voices, and so many others, that aren't necessarily here, but I know we shared a lot of resources in the chat.

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Elisabeth W Burak: And we are so thrilled that you joined us, and we hope, you'll join us for the next conversation, and share this with your folks, and let us know how we can continue this conversation, because we really do want this to be the beginning.

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Elisabeth W Burak: To continue to do it. So, thank you so much.

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Elisabeth W Burak: Have a great day.