Elisabeth Wright Burak: Hi, everyone we have folks that are still joining. So we're gonna wait one more minute before we get started. Thanks for joining us today.
Elisabeth Wright Burak: Okay, well, we're 1 min past. And I think the numbers aren't really slowing down. But hopefully we'll get things rolling and we'll also have the recording available. So thank you for you, everyone for coming, welcoming you today for our webinar on how Medicaid helps provide early intervention for infants and toddlers with disabilities and developmental delays. So my name is Elizabeth Wright Burak, and I'm a senior fellow at Georgetown Center for Children and families.
Elisabeth Wright Burak: We're a nonpartisan policy and Research center, founded in 2,005, with a mission to support access to high quality, comprehensive and affordable health care for all of America's children and families.
Elisabeth Wright Burak: I and many of my colleagues work largely on Medicaid, and particularly in my case, Medicaid's role for maternal health and young children.
Elisabeth Wright Burak: We are really thrilled to be co-sponsoring this webinar with the idea infant and Toddler Coordinators Association and 0 to 3. And we're really grateful for their participation and partnership and leadership on these issues.
Elisabeth Wright Burak: So first, st in terms of housekeeping, we are going to be recording this webinar and then presentations and panel discussion and the slides will be available after the fact. So we'll record the webinar and send the slides out after the fact.
Elisabeth Wright Burak: We do plan to hold some time at the end of the webinar for your questions.
Elisabeth Wright Burak: and we will be taking those through the Q&A portion of the zoom link. So go ahead and go in there, and you can start putting your questions in now.
Elisabeth Wright Burak: okay, next slide.
Elisabeth Wright Burak: So this is what we're going to be talking about today.
Elisabeth Wright Burak: I just want to put a few disclaimers out. We're not going to be talking about something I hope we can return to in a year from now, which is, how do we strengthen the ways that early intervention programs, particularly part C programs and Medicaid work together at the state level and ensure that they're serving as many infants and toddlers as they can. There are a lot of creative ways that States are doing this
Elisabeth Wright Burak: and doing more of this in Washington State, in California, in Texas we'll hear Adriana talk about their work. But that's not the focus of today. Today. We're really trying to give the basics of the ways that Medicaid supports infants and toddlers that may also be served by part C early intervention in states.
Elisabeth Wright Burak: and then talk a little bit, and mostly about what the impact of the Federal medicaid cuts that are on the table in Congress would mean for those infants and toddlers and their families, and what that would mean for the state part C programs that are trying to make sure that they serve them.
Elisabeth Wright Burak: So I hope, like, I said, I hope in a year we can come back to these other conversations, and I'm happy to point folks in directions of really visionary state folks that are are doing great things, but we hope we hope we'll get back to it. Okay?
Elisabeth Wright Burak: So what we're going to go through the Medicaid basics talk a little bit about how Medicaid and part C work together, and the proposals under consideration in Congress.
Elisabeth Wright Burak: And then we're going to hear from a parent
Elisabeth Wright Burak: in Michigan talk about the State, the State vantage point from Texas, and also have a panel discussion. And my other caveat for you all is that you know every state is so different, right? We know that in the Medicaid space. It's absolutely also true in the early intervention part C space.
Elisabeth Wright Burak: So while one speaker, you know what what's going on in Texas might not be the same for someone in Michigan or another state. Exactly. So you can't. We can't always extrapolate. But we'll try to at least give some basics
Elisabeth Wright Burak: okay next slide.
Elisabeth Wright Burak: So I have a number of really smart people to help me do this work. The 1st is Rebecca Amadon, who is a parent of a child who receives early intervention and Medicaid services in Michigan, and she's also an advocate for families in her part of Northwest Michigan.
Elisabeth Wright Burak: Maureen Greer, who is the executive Director of the Idea Infant and Toddler Coordinators Association. She also works in the Indiana. I know prenatal quality collaborative, and I think wears a number of other hats. She's very active, maternal, and child health. Adriana Kohler is the policy director of Texans care for children who is a policy research and advocacy organization that's been working specifically on this intersection between early intervention and Medicaid.
Elisabeth Wright Burak: And then Johanna Lister is the director of policy for healthy steps at 0 to 3 I will put a plug in. Johanna had a recent story on Npr. That we can share, but really dug into this intersection, and the interviewers talked to Johanna, and also a family in Texas that is relying on both early intervention and Medicaid. So I encourage you all to check that out.
Elisabeth Wright Burak: Okay, next slide.
Elisabeth Wright Burak: So Medicaid is really, and you've probably heard more about it. Recently, as the Federal proposals have come into play, Medicaid plays, many roles for many families across the country
Elisabeth Wright Burak: Medicaid. Along with the Children's Health Insurance program. They provide health coverage for nearly half of all children.
Elisabeth Wright Burak: 99% of kids in the foster care system. Half of kids with special health care needs 40 to 50%. In some states, much more of births. It's the largest funder of long-term care services and nursing home services. It's the largest funder of substance, abuse and mental health services.
Elisabeth Wright Burak: And it is a really important health care coverage provider for rural communities as well as urban communities, in some cases higher prevalence for children, in particular, in rural communities.
Elisabeth Wright Burak: and Medicaid's really an important safety net, not only, for you know, as income changes and folks folks lose health insurance. But it's also really important when health care expenditures change because of pandemics or natural disaster, natural disasters. It's really there, particularly the way it's funding is structured to support States and their ability to serve low income families in particular and make sure they have health insurance when they need it
Elisabeth Wright Burak: next slide.
Elisabeth Wright Burak: So we talk a lot about, and we'll continue to talk about the different families and populations that rely on Medicaid as a primary or secondary coverage source.
Elisabeth Wright Burak: But it's also important because it's covering a lot of children in particular, and others who may have particular health needs.
Elisabeth Wright Burak: It is an important funder for many of the systems that take care of children and families. Right? I mentioned child welfare. Certainly the health care systems, disability services. And as we're going to talk about today, the education, and particularly the individual Disabilities Education Act and state and schools ability to put that into action in states
Elisabeth Wright Burak: next slide.
Elisabeth Wright Burak: So we're really talking today about children under the age of 3, because that is the children that are served by idea. Part C early intervention.
Elisabeth Wright Burak: and for Medicaid it covers at least, I would say, 3 fourths of children under age 3 for some of the survey data, it can be an undercount. So I'd say it might be larger. But you can see, too, it's 70. I'm sorry. 75% of low income children under age 3, just under 200%, and nearing on half of children under age. 3
Elisabeth Wright Burak: next slide.
Elisabeth Wright Burak: So folks who aren't as familiar with Medicaid as a little bit of a primer. The Federal Government pays States on an open-ended basis to help administer the program, and the Federal Government sets minimum criteria and the State can choose to go above those criteria, and has a lot of flexibility. And, as I say, the who, what, when, and sometimes where of health care services.
Elisabeth Wright Burak: One of the who's on that is really who qualifies for Medicaid. There are certain coverage populations that are required, but they may not need to be above certain income levels. So we work every year with the Kaiser family foundation to look at what particularly income eligibility levels are. Most folks get medicaid coverage through income eligibility.
Elisabeth Wright Burak: And, as you can see here, this is the Median across States. But kids are most likely at the highest income levels are eligible for Medicaid. So in a lot of states it may not be other members of the family, but children and pregnant women are more likely to be eligible for medicaid coverage in terms of these income categories
Elisabeth Wright Burak: for states that have expanded Medicaid to low income adults. You see the gold bar here they have eligibility for parents and other adults up to 138% of poverty. And then we have
Elisabeth Wright Burak: 10 States left that haven't expanded Medicaid under the affordable care act to adults.
Elisabeth Wright Burak: and that to be in those States. If you don't have dependent children at home, you are not qualified for Medicaid. If you are a parent and have dependent children, and you don't qualify through other pathways, you have to be on at a median level of 34% of the poverty line
Elisabeth Wright Burak: to get access to Medicaid. And I say that because a lot of parents in many low income, parents and States may qualify for Medicaid that way. But some folks are under the impression that parents automatically qualify in states. And that's
Elisabeth Wright Burak: and let in states that haven't expanded the program. But that's there are a lot of parents that are low income that might not have access to Medicaid if their state hasn't expanded it
Elisabeth Wright Burak: next slide.
Elisabeth Wright Burak: So in terms of that was sort of in a very, very fast run of income eligibility.
Elisabeth Wright Burak: There are other ways that Medicaid can cover children with disabilities which might include children who are also eligible for early intervention.
Elisabeth Wright Burak: On the left hand side you see sort of the averages by age across states unlike the last slide. Those are averages, and not Medians, but in terms of children who might qualify only by income. But there are other categories that States can determine that States have the flexibility to add where children can have qualify, both on the basis of a disability
Elisabeth Wright Burak: or a health condition and some level of income. So there are varying options that States might have
Elisabeth Wright Burak: if in the Katie Beckett option, if the child has a disability that qualifies them for institutional level of care, but they can come home.
Elisabeth Wright Burak: Then the Katie Beck Beckett option says that States can only include the child's income for States who have taken that to qualify them for medicaid coverage so that they don't lose it when they leave an institution, for example, medically needy is when families are spending so much money for these healthcare needs of their children
Elisabeth Wright Burak: that they can qualify as they've spent down to certain levels of the poverty line. So there are other ways, particularly if children with disabilities are prohibitively their care is prohibitively expensive for families. There are some pathways that States can go about getting that.
Elisabeth Wright Burak: and I would I would encourage everyone to go. If you're curious about these different pathways and want more information. The resources we have here from the Kaiser family foundation are really important, but also the catalyst center at Boston University has an incredible resource on these different pathways, and how Medicaid in particular, works for children with disabilities
Elisabeth Wright Burak: next slide.
Elisabeth Wright Burak: All right. So we're going to talk now, and Maureen's going to join me on kind of how
Elisabeth Wright Burak: generally Medicaid and part C early intervention work together in States.
Elisabeth Wright Burak: So next slide
Elisabeth Wright Burak: part C. Early intervention. Sometimes we say part C early intervention, because I know before I was able to learn and be educated by the idea and education community. I would sometimes use early intervention very generically for any. You know the kinds of things that children needed to get in a preventive way to prevent or lessen conditions in the healthcare system, for example.
Elisabeth Wright Burak: but early intervention under ide part C is really a very specific part of the individual Disabilities Education Act for infants and toddlers for children under age 3
Elisabeth Wright Burak: and children can qualify, and again, states can vary on how they set those criteria based on their level of disability or developmental delay.
Elisabeth Wright Burak: And some States have actually opted to choose eligibility for kids who are at risk of a developmental delay, and I think it's true. But Maureen can correct me. I think most States offer either automatic assessments or eligibility for infants, if they are low birth weight, or have particular conditions
Maureen Greer: No.
Elisabeth Wright Burak: 5,
Maureen Greer: Actually not
Elisabeth Wright Burak: Oh, no, I just see, I thank you, Maureen. This is exactly why I have Maureen on to keep me honest.
Maureen Greer: Every State has the option to determine eligibility, whether it's percentage of delay or standard deviation. The medical diagnosis. But Congress intended that at risk would be optional for States. So some States certainly do serve that others can sort of slip it in by including it as a medical diagnosis. But it's not an automatic eligibility. Criteria
Elisabeth Wright Burak: Thank you that at risk option. But low birth weight is that a criteria that states most States use
Maureen Greer: It depends on the state
Elisabeth Wright Burak: Okay.
Elisabeth Wright Burak: just like Medicaid, it's exactly variable. So that's why, you see, there are, you know, at least 2 states that are nearing to 10% of kids under the age of 3 that are served in early intervention, and it can go as low as under 3% across the. And I would just say, Maureen reminded me that these education data that we pulled from
Elisabeth Wright Burak: actually show sort of a point in time. Day served early intervention. It's actually probably a little bit higher in most of these States, if not a lot more higher
Maureen Greer: It's usually double what the single day count is
Elisabeth Wright Burak: Thank you. Next slide.
Elisabeth Wright Burak: So Medicaid and early intervention
Elisabeth Wright Burak: are, have aligned purposes and sometimes overlapping purposes, even though Medicaid is really a health program. Of course, an idea is an education program.
Elisabeth Wright Burak: Both of them serve infants and toddlers. Both of them are there to provide preventive supports
Elisabeth Wright Burak: to young children and their family, and to some degree their families.
Elisabeth Wright Burak: Both have specific individualized eligibility, criteria that very much vary by state.
Elisabeth Wright Burak: One difference there is idea. Part C. Doesn't have income, eligibility, criteria. A State must serve any child who is referred by a pediatrician or through their child care center, or others to get an assessment. Early intervention may assess them, and if they meet particular range of disability, or have other qualifying criteria, they would enroll. States, are required to serve all of them
Elisabeth Wright Burak: regardless of their income.
Elisabeth Wright Burak: So the reason that Medicaid and early intervention will work together is maybe a child is covered by Medicaid.
Elisabeth Wright Burak: They then are assessed and enrolled in the early intervention program.
Elisabeth Wright Burak: and when we get to the benefits line, there are a number of idea part C services that help to prevent or or lessen certain developmental or physical delays. Speech therapy, physical therapy, occupational therapy, a lot of therapies
Elisabeth Wright Burak: and other services that are also health services that are covered under State Medicaid plans. So that's why for the eligible child, if there's an eligible service, and it's an eligible provider that's enrolled in Medicaid Medicaid can offset some of the costs of the State early intervention program.
Elisabeth Wright Burak: and that's important because they are financed in very different ways. Medicaid is financing on an open-ended basis. If a if a person qualifies in the State, the Federal Government is going to pay for a portion or a particular share from 50 to 70, some 75% of the cost of the care of that child. In this case, on an open-ended basis
Elisabeth Wright Burak: in idea, part C.
Elisabeth Wright Burak: The Federal grants are fixed amounts based on the percentage of children under the age of 3. It doesn't have any regard to what the eligibility is in the State, or the number of children served, or the program costs in that state. And so I think that the early Childhood Technical Assistance center is really good about talking about where the statute and regs talk about the ways Ida is A is meant to be an interagency system. It's not meant
Elisabeth Wright Burak: to furnish these services by its own. It's it's supposed to be there to connect different services and programs that serve infants and toddlers like Medicaid
Maureen Greer: And Elizabeth. I think the one thing that I would add is that Medicaid is the only other fund source that by statute is required to pay before Federal part C. Dollars are under the Catastrophic Act
Elisabeth Wright Burak: Thank you so much for that. So for those of you who are really familiar with Medicaid, you know there's always a line of Medicaid has to be the payer of last resort. If there are other insurance payers or other programs that pay Medicaid is intended to be the last dollar paid right after other payment. Sources have come in. That's not the case with part C part C may be the last payer, and States can use should use Medicaid first, st if it's as I said, those 3 E's are met or eligible child service provider.
Elisabeth Wright Burak: And so that is how we see a lot of States using those together. Thanks, Maureen, for that for that addition.
Elisabeth Wright Burak: and I'm going to turn it next slide, please.
Elisabeth Wright Burak: I'm starting to turn it over to marine, as you can tell. But the last point we wanted to make. And this is another table from education data that came from the early childhood technical assistance center.
Elisabeth Wright Burak: States have begun to see more higher percentages of young children, and the funding to serve those children from the Federal Government in the Grants has not kept up with that. So the per child funding has started to decrease, even as States are seeing and serving more children in early intervention. So that is just another example of the Federal money going into early intervention. States doesn't pay the full cost.
Elisabeth Wright Burak: and which is why you see a lot of states using Medicaid and leveraging other sources to pay for early intervention services. So I'll turn it over to Maureen because she's going to talk about her perspective on the interactions from a survey that they do for part C directors
Maureen Greer: Thanks, Elizabeth. Next slide, please. So, as Elizabeth said, because the Federal part c funding doesn't fully cover what the expenses are related to providing services.
Maureen Greer: Itca, the Infant Toddler Coordinator Association for the last 15 years, has done a finance survey to really look at and collect data on. What is it actually, are we looking at in terms of that? So part C. Early intervention funds come from a variety of sources in the last survey that we did where all of the data is analyzed.
Maureen Greer: The reported funding for our intervention was 3.9 billion.
Maureen Greer: That's with a B not a million. And so it's a substantial amount of funding. But we know that a fair number of States can't provide all of the data, and particularly they can't provide all of the Medicaid data. So if you see of the funds that we know about in States, we're able to report the top 2 fund sources are
Maureen Greer: state general funds, which means they could go anywhere as opposed to the state part C appropriation, which can only be used by the part C program. So you see the fund sources there and then. The Medicaid amount is only reflects reported revenue from 24 States.
Maureen Greer: The additional issues we look at Federal part C funding, and in sort of the 4th place, and then about 876 million dollars comes in from a variety of other resources about 16 other different funding types. So you can see the scope of not only what the federal part C dollars, which is significantly low.
Maureen Greer: but we really feel based on the data that we've been able to look at over the number of years is that if all States could report all of their Medicaid data.
Maureen Greer: Medicaid would become the single largest source of revenue that supports part C programs. And we would think that
Maureen Greer: that part C as a system would be between 5 and 6 billion dollars based on the information that we have. So while clearly not as large a program as many of the other early childhood programs, not insignificant, and, in fact, almost every State, even the minimum allocation States, which means they get the fewest amount of
Maureen Greer: federal part C dollars are still running a multimillion dollar business to support children with delays or disabilities. But Medicaid indisputably is a significant and major important fund source.
Maureen Greer: Next slide, please.
Maureen Greer: if we look at the 2023 part C survey findings. We have a 2520, 25 survey out right now, but not all of the data gathered or analyzed. But in 2023, on average States reported 55% of the children that were enrolled in part C were also enrolled in Medicaid. The range of that was from 0%
Maureen Greer: to 95%.
Maureen Greer: Medicaid by reports represented 39% of part C funding ranging from 5% to 79%. So again, as Elizabeth indicated in our earlier conversation, every State is different, even with the opportunities.
Maureen Greer: similar opportunities in terms of funding source. But the percentage of their funding varies mainly because every State, as you know, Cms can allow certain services to be provided. But it's up to each State to determine what they actually will provide or pay for on the part of Part C,
Maureen Greer: and some States have done a really good job of expanding and covering under Epsdt all of the services for that child and other States have really only been able to receive funding around the therapy so otpt and speech.
Maureen Greer: But nearly all of the 46 States 44 of the 46 States that answered the survey reported that they used Medicaid funding
Maureen Greer: for both administrative kinds of activities as well as direct services. So data systems, evaluations and assessments, development of an Ifsp some providing service coordination. So really, literally, as we say about part C, if you know one state
Maureen Greer: about part C. You know, one state. Similarly, we can say, make that same kind of statement around Medicaid funding in part C. What it pays for
Maureen Greer: in each State is different from what it could pay for. And it's different from one state to another.
Maureen Greer: And the bottom fact, I think, is that for the 22 States that reported on funding level, that Medicaid totaled nearly 683 million in financing. And again, remember, that is not. That's with 24 States not being able to provide the actual Medicaid amount.
Maureen Greer: So
Maureen Greer: without Medicaid or without even as limited as it is in some States it remains a critical source, and any change to Medicaid has the potential to have a negative impact on states and jurisdictions, ability to actually provide early intervention services.
Maureen Greer: So, Elizabeth, I think I'm turning it back over to you
Elisabeth Wright Burak: Yes, thank you, Maureen. If you haven't seen the surveys that Itca puts out of early intervention, it is hard for States to quantify things the way we'd like to see them. And and which is why I think Maureen did a good job of talking about reasons, that is, but it's an incredible wealth of information on sort of including the things that part D directors struggle with, which is including sort of keeping services available and funding.
Elisabeth Wright Burak: So we'll go to the next slide.
Elisabeth Wright Burak: So we want to talk a little bit about the proposals on the table to cut Medicaid
Elisabeth Wright Burak: and you've probably seen it in the news, and there are at the level of hundreds of billions of dollars in cuts to Medicaid, being considered in Congress right now.
Elisabeth Wright Burak: I would say that there is a lot of conversation among lawmakers about what this will and won't look like. But you know, we have said, and we have many educational webinars like this one. I would refer to you from my colleagues. It is really hard to overstate the level of what these hundreds of billions of dollars and cuts would do.
Elisabeth Wright Burak: And it's hard. And it's really impossible to have, at least in the case of the house number, a minimum of 880 billion dollars in cuts to Medicaid without impacting eligibility or benefits or other services that States would have to start to foot the bill for.
Elisabeth Wright Burak: And so I think there is some
Elisabeth Wright Burak: suggestion that it would be easy to do by sort of trimming waste, and from where we sit and what we know about the Medicaid program and States ability to run that program. There's not a lot of fat to cut in Medicaid, and it would really put States in a very difficult position of making hard decisions about where they need to cut
Elisabeth Wright Burak: income eligibility or services or provider rates, and the kinds of things that could have additional impact or collateral damage, I would say, on systems like early intervention.
Elisabeth Wright Burak: So let me talk a little bit about what those are next slide.
Elisabeth Wright Burak: so I won't go through the details. I have plenty of folks I can send you to. But the the big, the in January, the house budget, the Republicans sort of. There was a leaked list of the kinds of things that could get to the 880 billion sort of target number that was passed in the Budget resolution on the house side
Elisabeth Wright Burak: and on the left hand side you'll see some big. You could get some big numbers through per capita caps on Federal Medicaid funding, or a block grant, I think, per capita caps or a cap on how much you would spend on each person per year would go up sort of a fixed cap.
Elisabeth Wright Burak: And in these any of these proposals, particularly block granted per capita caps, it would change the open, ended nature of Medicaid. It would cap the in any way you look at it would cap the Federal investment, and those caps would get bigger over time so as hard as it might be in the early years to make up for some of the costs that States would be forced to take on or cut.
Elisabeth Wright Burak: That would only be harder every year.
Elisabeth Wright Burak: So not only are they big cuts, they are also in case of the per capita cap. I think one estimate was 800,
Elisabeth Wright Burak: 900 billion, or maybe 850 billion
Elisabeth Wright Burak: but those cuts would get bigger.
Elisabeth Wright Burak: There are other structural threats that would also save Federal dollars. And those are things like work requirements, looking at eliminating the higher matching rate for the expansion population or adults, which would also be prohibitively difficult for States to keep covering the adults on the expansion.
Elisabeth Wright Burak: Which is includes a lot of caregivers of kids who might be on early intervention.
Elisabeth Wright Burak: The restricting use of provider taxes, which is the way some and many actually all States. But Alaska helped to pay for the State share of pulling Medicaid funding
Elisabeth Wright Burak: and pulling back rules from previous administrations that try to remove red tape barriers kind of putting those options back on the table for States and those and ultimately depress enrollment which then decreases spending. But no matter how you look at these
Elisabeth Wright Burak: options on the table.
Elisabeth Wright Burak: they're all cuts. They all result in shifting the burden of that cost to the States and the States have to make the hard decisions about where to make cuts next slide.
Elisabeth Wright Burak: So right now we have a budget resolutions for reconciliation that have been passed in the Senate and the House. The House has at least 880 billion dollars in cuts in Medicaid
Elisabeth Wright Burak: each chamber, under normal reconciliation rules, has to pass the same resolution.
Elisabeth Wright Burak: In order to proceed with this process that they go through to for the budget. This is how they want to pay for tax cuts and some of other trump's priorities.
Elisabeth Wright Burak: Once the resolutions are passed, then instructions go to the committees in the House and the Senate to make decisions about those specific proposals like the ones I talked about that we've seen floated
Elisabeth Wright Burak: right now. The Senate and the House don't appear to have the same resolution, but we're hearing there might be a vote on some sort of similar resolution
Elisabeth Wright Burak: potentially this week or next week, and we're a little bit in uncharted territory with what the normal rules would be. But just to know once a number of any sort is passed, or these joint resolutions are passed. The next step is to go to the committees and really debate some of these options, all of which would mean real cuts if we're talking about these big numbers
Elisabeth Wright Burak: next slide.
Elisabeth Wright Burak: So I'm going to stop there and we can answer questions at the end. But I want to turn it over to Rebecca.
Elisabeth Wright Burak: who can talk a little bit about her experience in Michigan
Elisabeth Wright Burak: and the ways that her family has been helped particularly by early intervention. Thanks, Rebecca, for joining us
Rebecca Amidon: Hello! Thanks for having me here today. My name is Rebecca Amidon, and I'm here to share the story of our daughter Indigo, and how Medicaid and early intervention services have made a significant difference in her life and in our family's life. During an incredible, incredibly challenging time.
Rebecca Amidon: Our daughter, indigo, as you can see in the picture. There is 23 months old, and when she was born we never imagined the struggles that we would face as she grew up, and at 1st everything seemed perfectly normal, but as time went on we noticed that something wasn't quite right, because she wasn't walking on her feet. She would only walk on her knees, and her coordination seemed really off.
Rebecca Amidon: It was concerning, of course, but we didn't quite know what to make of it so indigo was referred to early on which is a Michigan program that provides early intervention services to children with developmental delays. It was through early on that indigo's physical therapist noticed something that we hadn't, which was tremors.
Rebecca Amidon: This discovery was crucial as it led to further testing, and ultimately the diagnosis of ataxia, which is a neurological condition that affects balance and coordination
Rebecca Amidon: without early on, and the observant and caring professionals involved in indigo's therapy, we may have never known that her situation was as serious as it turned out to be
Rebecca Amidon: early on provides in-home physical therapy which has been vital to indigo's progress because it allows indigo to receive therapy in a setting where she is most comfortable, which is with her mom and her dad at home.
Rebecca Amidon: It is such a small detail, but it makes a world of difference when it comes to getting her the help that she needs.
Rebecca Amidon: And this is not the 1st time that Early On has stepped in to provide invaluable services for my family in the late fall of 2021. Our son Ace, who was 2 at the time, was not talking at an age appropriate level.
Rebecca Amidon: Well, he was a pandemic baby who was born one month before the 2020 shutdowns, and, like many pandemic babies, he was. Speech delayed
Rebecca Amidon: early on, provided weekly in-home speech, therapy sessions with him that allowed him to learn to talk.
Rebecca Amidon: and Ace is now 5 years old, and his grandpa asked me a few days ago, How does a 5 year old know the word telekinesis
Rebecca Amidon: and Ace's vocabulary is so advanced at this point he lectures me about erosion on the lake shore, and he, even his preschool teacher, told me that he gave them a detailed breakdown of how the bird flu is passed along and contracted by humans
Rebecca Amidon: to other birds. And it's it's just been amazing to to see that progress that that he has made in the last few years.
Rebecca Amidon: but as a family
Rebecca Amidon: we are currently all on Medicaid, due to an unexpected job loss. My husband's job was outsourced to another country.
Rebecca Amidon: and suddenly we found ourselves without financial security, and at a time when many families might be forced to make painful decisions about what they can and cannot afford Medicaid, and early on has provided us with the peace of mind to know that our daughter's needs will be met, and we won't have to choose between the essentials.
Rebecca Amidon: So Medicaid played a critical role in supporting our family. During this time, thanks to Medicaid, we were able to afford necessary medical treatments for indigo, including an MRI on her brain. Orthotic ankle braces to help with her walking, and 2 additional weekly physical therapy appointments at our local hospital system.
Rebecca Amidon: So these services have been essential to her progress, and we are incredibly grateful for the support that they provide.
Rebecca Amidon: So I want to leave you all with one Key thought today that Medicaid and the funding that it provides to early intervention services are a safety net for all Americans. You know whether you've used it before or not. No one expects to face an unexpected job loss or health crisis, or a sudden turn of events that leaves you struggling to provide for your family.
Rebecca Amidon: But Medicaid is there to catch us all when we fall? It's not just for people who've always needed it. It's for people like my family as well, who never thought that we would be in a position to rely on it and without Medicaid, and these early intervention services our family would be facing a much different reality, but having Medicaid there ready to support us, has given our family a sense of security and relief.
Rebecca Amidon: So thank you all for your time and for listening to my family's story. I hope you can see just how vital Medicaid and early intervention services are for families like ours, and how it makes an enormous difference in the lives of children like indigo and ace, and we're just forever grateful for the support we've received, and we hope that others can also benefit from these services, just as we have
Elisabeth Wright Burak: I'm smiling ear to ear, Rebecca, I so appreciate your sharing your story, and I also want to just clarify, too. I mean, you also had to get on Medicaid as parents and caretakers during this period, and, as you said, it was unexpected. I just want to say to everyone on the call. If we.
Elisabeth Wright Burak: you know, some of the debates and the proposals around Medicaid cuts are also around this expansion that's gone to many adults in States, and that could impact a lot of caregivers for young children, even if the Medicaid eligibility
Elisabeth Wright Burak: for children potentially is safe. So I think you know, that is a really important piece of the financial security puzzle, and I really would love to bring Ace over to explain the bird flu to me. I have lots of lots of my own questions.
Rebecca Amidon: Have, like 4 h available week
Elisabeth Wright Burak: Join some epidemiologists as well. So thank you so much. I can't tell you the praise in the Q. And a. In the chat of folks that said, I don't want to have a question. I just really want to thank Rebecca for sharing her story so hopefully. We can hear from you again shortly after Adriana. Thank you.
Elisabeth Wright Burak: So finally, and then we'll open it up for a broader conversation. Adriana Kohler, from Texas. Care for children is going to talk a little bit about how Medicaid and early intervention work together at the State level in Texas, and why Texans care sort of got into the advocacy for those programs
Adriana Kohler - Texans Care for Children: Thank you. Thank you, Elizabeth, and yes, thank you, Rebecca, for sharing your story. It's so important to hear how the early invention programs and Medicaid families. I'm so happy to be with you all today. My name is Adriana Kohler. I'm the policy director at Texas. Care for children. We're a statewide children's advocacy nonprofit. We work across the Lone Star State for policy changes that will help Texas kids and families.
Adriana Kohler - Texans Care for Children: You can go to the next slide. Thank you. We work on maternal and child health as well as a specific focus on the part C early intervention program. So I'm really happy to be with, y'all, who have such great experience and national expertise in these programs.
Adriana Kohler - Texans Care for Children: Texas, I'm here to provide a little perspective from our state and a story about some challenges that our State has faced in its program in the past to give you a sense of
Adriana Kohler - Texans Care for Children: some of the impact that cuts might have across the nation. In Texas we are not a Medicaid expansion state. So our Medicaid program is primarily focused on specific populations. Medicaid is primarily available to children, pregnant women and postpartum women, people with disabilities, adults and children
Adriana Kohler - Texans Care for Children: and seniors. So, in fact, 3 out of 4 Medicaid Enrollees in Texas are children that does include foster youth. It includes children with disabilities and children with low incomes in low income households. So the Medicaid program is so important for health care, access for Texas children
Adriana Kohler - Texans Care for Children: I want to provide. Oh, you can go to the next slide. Thank you. I want to provide a little example of how Medicaid has helped families here in Texas. This is Cheryl, a grandma taking care of her 3 grandbabies. She took on care for her 3 grandbabies after her daughter passed away from pregnancy complications. Medicaid helps all 3 children
Adriana Kohler - Texans Care for Children: get the access to care they need from checkups to medication. To
Adriana Kohler - Texans Care for Children: pediatric dental care. In particular, Medicaid helps Cattrell in this picture. It helps him tremendously. From birth. He accessed early intervention, part C services, and he was able to get physical therapies, occupational therapy help with nutrition support through an intervention early intervention provider
Adriana Kohler - Texans Care for Children: and he used Medicaid to pay for those that care. He just turned 10. This year I went to his birthday, and all 3 of them are doing well. He continues to utilize Medicaid for Pt. Ot. Speech therapy as well as nurse aids even nutritional support at school. It's just a wonderful
Adriana Kohler - Texans Care for Children: way that the family has been able to access, care, and help the entire family as the kids grow up.
Adriana Kohler - Texans Care for Children: Can you go to the next slide, please.
Adriana Kohler - Texans Care for Children: as was mentioned before. If you know one early intervention program, you know one early intervention program. So this is just a snapshot from Texas, we leverage over a dozen different funding sources. It's pretty complicated for the Ei providers. Medicaid is a critical source of funding
Adriana Kohler - Texans Care for Children: for Texas early intervention.
Adriana Kohler - Texans Care for Children: this is not a perfect graph. It doesn't include everything, but it gives a snapshot. Federal Medicaid funds are critical. They offer. They provide
Adriana Kohler - Texans Care for Children: more than 1 5th of of
Adriana Kohler - Texans Care for Children: of total revenue for the program, and then, of course, the State match. We rely a lot more than other States on Federal funds, both part C. Federal dollars and Medicaid Federal dollars.
Adriana Kohler - Texans Care for Children: Not included in this graph
Adriana Kohler - Texans Care for Children: are some additional Medicaid services. I see in the chat that people are asking about how Medicaid provides for Pts speech, therapy, ot in our state budget.
Adriana Kohler - Texans Care for Children: Medicaid and Chip fund those services in a different area of the budget. So it's not even included here. So there's more Medicaid funding that that comes to an early intervention. Provider, by billing Medicaid managed care plans for speech, therapy, occupational therapy
Adriana Kohler - Texans Care for Children: Pt. And also not included. Here is private insurance family cost share, and some locally collected funds. A lot of early intervention. Providers do have to rely on philanthropy and some local dollars to bring in donations to help support their programs.
Adriana Kohler - Texans Care for Children: You can go to the next slide.
Adriana Kohler - Texans Care for Children: Kids. Enrollment does vary in our program. So I talked to some early intervention. Providers that say it's about 50% of kids in Ei are enrolled in Medicaid. And I talked to another one this week that it's about 85%. So it really varies based on where based on the region and the demographic in that area. But again, it is a critical source of funding for all Ei programs.
Adriana Kohler - Texans Care for Children: I want to provide a little bit of a cautionary tale of some stuff that happened, some challenges over a decade ago that we're still
Adriana Kohler - Texans Care for Children: that we're still coming back from, and I want to offer it as
Adriana Kohler - Texans Care for Children: maybe a glimpse of some challenges we want to avoid in the future. So in 2011, and then, in some subsequent years, State lawmakers made some pretty drastic changes to the Ei program that had a real impact. There was a decrease in state funding, so the State General revenue.
Adriana Kohler - Texans Care for Children: There was a drop there, and they also reduced Medicaid reimbursement rates for specific children's therapies. Speech, therapy, physical therapy ot that impacted early intervention as well as all the private home health agencies that Bill Medicaid. It was a pretty drastic cut.
Adriana Kohler - Texans Care for Children: and then they also narrowed program eligibility. So that meant a child or an infant had to be a little bit more delayed, a percentage delay than before to narrow that. And you might imagine this. The programs took a hit. You can go to the next slide. The impact was pretty devastating. Providers dropped out of the program. There were 58 providers across Texas in 2011. Now we're down to 40.
Adriana Kohler - Texans Care for Children: That means those participating providers have to
Adriana Kohler - Texans Care for Children: have to choose to take in more service areas, more zip codes, more counties, because early intervention is
Adriana Kohler - Texans Care for Children: a guarantee for children. We needed. We need to cover the entire state. There was a pretty drastic decline in kids enrollment. We analyzed the data, and it was about a 14% drop much bigger in certain areas, it was about 20 to 30% in other areas of the State.
Adriana Kohler - Texans Care for Children: Many of the programs dropped their staff for child find eliminated the position entirely and reduced those child find activities
Adriana Kohler - Texans Care for Children: additionally, the staff that they did have had higher caseloads, which meant more kiddos, more services to provide. And they're only 24 h in a day. So it it really.
Adriana Kohler - Texans Care for Children: it threatened program quality and made it put higher demands on the programs. Participating providers had to cover more area. They are just covering a huge swath of the State. Some providers cover a bigger population and county area than the entire State of Rhode Island. So it's
Adriana Kohler - Texans Care for Children: it's huge. And then, finally, the narrower eligibility meant that many toddlers entered later. You know, you had to be more severe or have higher needs in order to qualify. So they're coming in at 2, 2 and a half. And that's hard for the programs to provide those services when they're just going to age out and have to go to early childhood special. Ed. It's hard to kind of gain that relationship and rapport with
Adriana Kohler - Texans Care for Children: with pro, with the kiddos and the families before they transition to the part B program at school.
Adriana Kohler - Texans Care for Children: So I say all that. Not to be a Debbie Downer we have. You can go to the next slide, please. We have made some progress over the last few years.
Adriana Kohler - Texans Care for Children: State funding has increased again steadily over the last few years, and I really thank the State, the State agency, and lawmakers for that. Kids. Enrollment has increased. It's gone back up, especially after Covid, you know. But
Adriana Kohler - Texans Care for Children: but it was a drastic impact, a devastating impact for programs. You'll see here one provider says they cover a 20,000 square mile service area and they're really struggling to get the staff to cover that area and those kiddos and then analyzing the State funding State and Federal sources.
Adriana Kohler - Texans Care for Children: If you look at the real dollars adjusted for inflation. It's still about a 38% decline from what it was over a decade ago. So these programs are having to do more with less
Adriana Kohler - Texans Care for Children: facing enrollment growth and and bigger service areas, but still really a challenge in terms of funding.
Adriana Kohler - Texans Care for Children: I want to end there, saying, you know, I want to avoid this for other States and Ei programs across the country. You know, we've we've gone back to a good place with early intervention. But the cuts that are that we're potentially facing in Congress could devastate the programs. Again, they rely on that critical source of funding, and we want it to continue to be stable for these programs to serve the infants and toddlers in need.
Adriana Kohler - Texans Care for Children: So with that I will
Adriana Kohler - Texans Care for Children: hand it back over to Elizabeth, so we can hear from our other panelists as well
Elisabeth Wright Burak: Thank you, Adriana, and you can see it doesn't take much, particularly for States that are
Elisabeth Wright Burak: doing, I think, is the part C. Law intended. The way I've been looking at it for states that are really using Medicaid to help pay for those services and supports. For part C could really be a double whammy if we see a Federal cut that impacts state spending and and bleeds over into impact on part C agencies, ability to serve families.
Elisabeth Wright Burak: So I wanted to hear a little bit more and make sure that Joe, from 0 to 3, and Maureen didn't have additional thoughts on what these billions of dollars in Medicaid cuts might mean.
Elisabeth Wright Burak: But then we can go to some closing thoughts and get to some questions
Johanna Lister: Sure. Thank you. I'm happy to chime in, and grateful to be here with all of you, especially Rebecca, love hearing your story, I think one of the pieces that I try to keep front of mind is that a lot of people don't understand Medicaid, and a lot of people certainly don't understand Medicaid and Ei
Johanna Lister: and I know Elizabeth, you and I talk about this all the time, because we actually have to explain 2 programs when we're speaking about this. But when we talk to different policy makers and different audiences, I think it's really key to remember the different areas that Medicaid touches. And I think part C early intervention is one that really flies under the radar. But, as we can see, the impacts are huge.
Johanna Lister: I also want to say, part C moves into part B, and so providing services to young children through part C helps them succeed when they get to school helps fewer of them need services in part B, and we want kids to have these services. I think sometimes we think about these safety net programs, as you know. Okay, well, if kids need them.
Johanna Lister: Idea actually requires states to identify children who need these services because it's so essential for their basic learning and understanding. And we can't forget about the families, the way these services help families and allow families to
Johanna Lister: maintain, you know. Stay in the workforce, allow children to stay in childcare. I think it's important to really think about the downstream pieces of all of this which can be easy to lose sight of. But I think, Maureen and Elizabeth, the statistics that you put out in terms of the financing is, they're just staggering. And I think it's so important to see the role that Medicaid plays because it really cuts would be devastating.
Johanna Lister: And again, idea is something that is required. We need to meet these needs for children, and we need to figure out a way for States to be able to continue to do that without putting them in impossible situations financially. So we have a
Johanna Lister: a big task on our hands
Maureen Greer: Joanna.
Elisabeth Wright Burak: Oh.
Elisabeth Wright Burak: I just wanted to say 2 things, Maury. One is you. You remind me that Ida is required. But I didn't specify the requirements under Medicaid, and I think someone in Chat asked about Eps, Dt.
Elisabeth Wright Burak: Early periodic screening, diagnostic and treatment which is the benefit for children in Medicaid. And it says that children need to get all of their recommended screenings. Most States use bright futures. It's the American Academy of pediatric standards, universal screenings, and anything that's identified in those screenings as medically necessary. Children are required to receive.
Elisabeth Wright Burak: That is where we get into the services and certain interpretations of what those are, but at least from my mind. If I look at the list of Part C direct services.
Elisabeth Wright Burak: and even not, you know, even service, coordination. Those are all things that Medicaid pays for. So it stands to reason that it should be, if not already, paying in my mind for those, but they're both required. So not only do we have 2 things, 2 programs with aligned
Elisabeth Wright Burak: aligned purposes, but they also have both have entitlements for the children that they serve. Sorry, Maureen, go ahead
Maureen Greer: So I can add to that, too. I think part of the challenge is that part C doesn't fit neatly. It's not just a health program. It's not just an education program. It's not a rehab program, really is all of those things which makes it more challenging to sort of fit both programmatically and financially into sort of this neat package that everybody can understand.
Maureen Greer: I think the other thing, Joanna, that I was thinking about is that we have not done a good job on
Maureen Greer: really documenting a return on investment. And it's not just a return on investment from an education standpoint in that. If we do good early intervention, it means that we may not be required. That child may not be required to participate in the special education system.
Maureen Greer: which is always more expensive than what earlier intervention is, but it's also a return on investment for Medicaid as well, because if we get in early and we provide those medically necessary, developmentally necessary services, we reduce the amount that of service that they may need later. So it's not just a return on investment on the side of
Maureen Greer: education. But I think it's also important to talk about. It's a return on investment in family engagement and community engagement and the ability for families as Rebecca talked about to be able to meet the needs of
Maureen Greer: their family. So I think in many ways we have really looked at it as only, like Jim Heckman and others have done is it's only a limited return on investment. But it's workforce development. It's all of the things that are proactive and can document a show of return on investment.
Maureen Greer: And we, as a community, haven't done a really good job of that. It's 1 of the things that Itca is looking at right now in terms of can we actually provide states with good, whether it's infographics or information that really looks at?
Maureen Greer: What's the return on investment. If you invest here, it's going to pay off on the other end. And I think we collectively, we all need to do a better job of that
Elisabeth Wright Burak: Well, and I will say, I think Melody or folks can put in the chat. We do have prenatal to 3. Impact center did a piece on early intervention and the evidence base, and it seems like there is some evidence on cost avoidance, as you sort of referred to Maureen, so there are probably ways to do that. And for those of you who aren't familiar with the Medicaid side we have a lot of good research linking
Elisabeth Wright Burak: Medicaid access to long-term educational and health and employment outcomes. So I think, wow, what a great double impact. If we can maximize both of these programs.
Elisabeth Wright Burak: We are getting to time. We have a lot of questions in the Q. And A. We've addressed some of them. But I want to tell everybody who's asked a question. We will return to those questions
Elisabeth Wright Burak: because I want to give every one of our panelists sort of the final word on sort of what the one thing, you want to leave folks with the importance of Medicaid to infants and toddlers or early intervention.
Elisabeth Wright Burak: So I'll start with Maureen
Maureen Greer: It's critical. It's a critical piece of the funding puzzle for every State, regardless of whether the State has fully expanded all of the potential of Medicaid, or is using it in a very limited manner. Without it, the absence of it, or even the reduction, will mean that children will not get services.
Maureen Greer: there is no way around it. And so it's a vital part of continuing to serve young children and their families
Elisabeth Wright Burak: Joe, your take
Johanna Lister: Well, I would say, I think now is a moment to be really loud about all of this. I think we have an opportunity to educate, and, as Maureen said, a collective responsibility to really
Johanna Lister: help people understand how critical Medicaid is in general, but particularly for infants and toddlers, and so I would say to everyone, let's do what we can to understand this better and share stories. I think, Rebecca, having you that it's so important. These are really complicated wonky issues and people's stories make them real.
Johanna Lister: So I would say, be loud and share your stories
Elisabeth Wright Burak: Thank you. Adriana!
Adriana Kohler - Texans Care for Children: Say that.
Adriana Kohler - Texans Care for Children: yes, medicaid coverage and funding is critical, and it's going to be hard, whatever the proposals end up being, it's going to be really hard to quantify the effects, because not all of the effects are tangible in real time.
Adriana Kohler - Texans Care for Children: You know, these programs have a mission, and they are so passionate about serving kiddos. We have 40 programs in Texas.
Adriana Kohler - Texans Care for Children: They're going to serve these kids. It's just a matter of how they might have staff retention issues
Adriana Kohler - Texans Care for Children: with funding cuts. They might serve.
Adriana Kohler - Texans Care for Children: provide fewer hours per month because they're just stretched so thin it's gonna be hard to quantify. So
Adriana Kohler - Texans Care for Children: it's more. It's so important to prevent the cuts before we see that happen. The end result is going to be fewer services for kiddos, but it's going to be in 6 months, in a year, in 2 years, in 5 years, and it's going to be really hard to come back from that
Elisabeth Wright Burak: We want to make sure we tell the story and educate lawmakers so they can make as informed a decision as possible.
Elisabeth Wright Burak: And I'm going to give our star parent Rebecca the last word. And what you want to leave everyone with about Medicaid or early intervention
Rebecca Amidon: Sure. I think that Medicaid is bigger than most people think. We often stereotype people that use Medicaid, but often we don't realize that parts of Medicaid Fund these early intervention programs in certain ways.
Rebecca Amidon: So I would just ask that we speak up and we get involved in our communities. And I know it can be really difficult to have serious discussions with our friends and families about topics that could be divisive.
Rebecca Amidon: But if we frame it in a way that it's just a curious conversation, you know, and ask questions to get to the root of why they feel this way or why they judge this program or that program. Changing people's minds about Medicaid is a very simple way to advocate for children and the children in our community, not just your own children.
Elisabeth Wright Burak: Well said, I cannot thank my panelists enough
Elisabeth Wright Burak: for joining us today, and we will make the recording available and thank you to everyone for joining us today.