Episode 8: Autism & Medicaid with Lindsay Shea, DrPH, MS and Kristy Anderson, PhD

Researchers Lindsay Shea, DrPH, MS and Kristy Anderson, Ph.D. of Drexel University’s Autism Institute join us today to talk about Medicaid nationwide. We learn about some specific types of waivers, the history behind them, and those dreaded waitlists. We also learn about some important areas where there needs to be more funding for this type of policy research.

Today we’ll be discussing a couple of different resources for parents in Pennsylvania as a tangential part of our larger discussion about Medicaid access across the country. In Season 2, we will start delving further into Medicaid accessibility across individual states.


Show Notes


Joyce: Hi, this is Joyce and welcome to Mom Autism Money. Today, we are going to be chatting with Kristy and Lindsay about Medicaid.

Brynne: We’re gonna kind of be doing a bird’s-eye view of Medicaid because as you guys probably know, depending on which state you’re in, your Medicaid policies and access, and ultimately how that affects your personal finances are going to be very different.

Now, Kristy and Lindsay are joining us from the Autism Institute at Drexel University, and we’re super excited to talk to them today. We kind of found out some things that maybe we didn’t know before. And then also we found out some things that just apparently nobody knows because the research doesn’t exist.

So we want to encourage you guys to listen through the whole episode. Stay tuned with us till the outro. In the outro we’ll give you a little bit more information about other places where you can look and kind of learn a little bit more.

So Lindsay and Christie are from the Autism Institute at Drexel University. Since 2012, the Autism Institute has distinguished itself as one of the nation’s leading academic authorities on public health issues in autism spectrum disorder. Their world-class researchers span a variety of disciplines in public health science and are united by their central mission of improving the quality of life for individuals with autism of all ages through community-based action.

We’re going to talk to two researchers from the Autism Institute today, Lindsay Shea and Kristy Anderson. Lindsay Shea is the leader of the life course outcomes research program and director of the policy and analytics center at the AJ Drexel Autism Institute. She is also an associate professor.

Kristy Anderson is a researcher who focuses on SSI, SSDI, cash assistance, and the interplay between various social programs. Kristy also has an adorable dog who you’ll get to meet in the interview. All right, guys, let’s get to it.

(whooshing noise)

Brynne: All right, everyone. We are here today with Lindsay and Kristy from the Autism Institute at Drexel University. And we are going to be talking about Medicaid. And I think for parents, a big thing, probably, maybe even the biggest thing that’s going to affect your finances just on a day-to-day basis is going to be your state’s Medicaid policies and how easy they make these programs to access, what they cover and what they don’t.

Because a lot of times, if you live in a place where the services are not covered, you end up having to take those enormous costs on yourself as a family. And so we’re going to talk about that a little bit today. So, Lindsey and Christie, as far as I understand it, there’s more than three ways that states handle Medicaid for younger children.

But two of the main ways in the states that do provide kind of that on-ramp for families, even if they have a income that’s a little higher than the typical Medicaid qualification requirements, is the TEFRA or Katie Beckett program. And then another, another method to get kids on is those home and community-based service waivers.

And so I’m wondering if we can just talk a little bit about that and kind of what those two programs are and how they work.

Kristy: So different states have different programs for Katie Beckett, but basically what it does is it, it will depend based on the types of services that are covered through the Katie Beckett program.

But it’s exactly what you said. It allows children with certain disabilities who have parents who have an income threshold above what would typically make one eligible for Medicaid to receive certain services. So really, again, it kind of depends on where you live to identify whether or not it covers beyond in-home nursing or if it covers other services outside of that.

Lindsay: I think it’s important to reflect back on why the TEFRA and Katie Beckett programs exist. And Katie Beckett was a really interesting case at a really interesting time. She was born in the early eighties and contracted and encephalitis, which required hospital based care. Her parents wanted to bring her home, uh, as she was recovering.

And as they were thinking about her lifelong trajectory, the anticipated lifespan for her was quite short. They didn’t anticipate that she would reach her twenties. When her parents tried to bring her home, they realized that there were these income thresholds that required people to be at a certain income level to be able to be able to get home-based care for their child.

And this is counterintuitive, right? There’s you’ve got here in this case, a young child with diagnosis, with a condition that requires medical intervention. And as we’ve seen Katie Beckett programs evolve that has included also children who have disabilities, who require other kinds of social and, and services and supports.

And so Katie’s parents were able to advocate and bring their case to lay at the federal level to have this attention to the case, whereby parents make too much money and their child is required because of those limits, to stay in an inpatient setting. When the goal across Medicaid services has increasingly been to be in the setting that is least restrictive.

So try and have individuals across the lifespan and in particular children shift to home-based care where possible, but if parents are making too much money and they can’t qualify for Medicaid to support those services, then that becomes a fundamental barrier to those children. Being able to be in their homes.

So the Katie Beckett program was really based on their family’s experience of trying to get supports to keep their child at home and having these bureaucratic requirements for income that were prohibitive to that happening. Katie ultimately lived age 34, which was more than three times what they expected her lifespan to be.

And obviously her mark on Medicaid policy on policy across states has been tremendous. So I think that these programs are placed for attention and to really understand how your state operates so that you can access home-based care in ways that might work for, for each individual family, and that’s going to look different for families.

It’s gonna look different for children. It’s going to look different based on diagnosis, medical criteria and where individuals are in their lives. So, you know, the same child at age four may look quite different by the time they hit age 10 or 12. And, and all of those factors are important considerations for thinking  about where you get care, how you get care and how that care is funded.

Pennsylvania has what has affectionately been called the loophole. And so this is a, a special way that Medicaid works in the state of Pennsylvania. Whereby parents can have an income that is beyond Medicaid thresholds, but if their child meets criteria for specific diagnoses or disabilities, then they can still qualify for Medicaid and be entitled to care under the Medicaid system, even if the parent has private insurance.

And so why does that matter? That that matters because if Medicaid provides across all states, a robust array of services and supports that have not traditionally been provided or covered by private insurance. Services like community-based participation. There are generally fewer caps on services in Medicaid systems than there are on private insurance and, uh, with the implementation of parity laws, which are laws that require the coverage of services across mental or behavioral health to be equivalent to the coverage for services that are medical, these programs, so this allowance for, for services to be covered under, under Medicaid, ensures that there can be coverage for that broad array of services and supports that may be needed based on the needs of each person.

Kristy: One of my passions is cash assistance programs and, um, social security.

So when trying to determine whether or not a child with a disability or autism, for example, is eligible for Katie Beckett program, they often use the social security administration’s definition of disability for a child. I’m not sure if you’re familiar, but essentially what happens is that to qualify for these cash assistance programs, you have to meet income eligibility as well as a disability eligibility criteria.

So they’re different for children and adults, but essentially what it means is the social security administration determines through a child’s records and available IEP and different, uh, doctor’s medical records that they have, what’s considered a severe functional limitation that is expected to result in death, or will last more than 12 months.

So that, uh, disability eligibility criteria for the Katie Beckett program often aligns to the social security administration. So if there’s any questions about whether a child with autism would be eligible, autism is one of the diagnostic criteria under SSI. So you can also go to that website to kind of get a sense of the different diagnostic criteria for specific disabilities.

Brynne: I do have a question as far as that goes. Well, two questions, actually, my first is if Pennsylvania is actually a TEFRA state Katie Beckett state, or if they run this loophole program through another type of waiver. But my, my second question that I should probably ask first. So with the Katie Beckett waiver, a lot of times the states will set the standards. I believe generally the standard in a lot of states is that your child has to meet this level of care that otherwise they would have to be an intermediate care facility. And so when we’re talking about autistic kids who might qualify for this program, I’m wondering for children who might be on one side of the spectrum, like what would have previously been referred to as Asperger’s, I’m wondering if that qualification, does that prevent them from accessing new services or is it you’re autistic and it’s autism lasts forever. It’s more than 12 months, so you qualify. How does that work for children who may fall into that category?

Lindsay: With the new diagnostic and statistical manual, which is the governing policy document that decides what diagnoses can be coded and billed for services versus those that cannot, Asperger’s was officially looped into this broader set of, of autism spectrum diagnoses. So, so there is no longer an official designation for Asperger’s as a separate distinction apart from autism in the more broad sense that does not necessarily mean the individuals who were diagnosed with Asperger’s no longer identify as having Asperger’s.

So, so it certainly means that, you know, the way you construct your identity does not necessarily align with what is written in the diagnostic and statistical manual, which is produced by the American psychological association.

Although Asperger’s is no longer an official diagnosis that can be coded or included in our payment systems, that doesn’t mean that it’s gone away from how people think about their own identities. There have not to my understanding been rule out criteria for Asperger’s separate from autism, because we know that there are still a continuum of needs for individuals who have, or had an Asperger’s diagnosis or may be on the autism spectrum otherwise.

Across the continuum of how they are impacted how they think about their own life trajectory and how they link that to the service portfolio that they need that would be provided within these programsand by Medicaid, does that help? Is that a sufficient answer Brynne and Joyce? And Kristy please also feel free to chime in.

Joyce: Yes. Actually, Brynne, my daughter was diagnosed first with Asperger’s. When she was teenager, it got changed to autism. So it continues.

Brynne: Yeah, definitely. I’m curious in other states, like I’ve read some state waivers that say like, oh, you know, you have to meet this certain level of care to be on the waiver or, oh, you have to have an IQ below this number to get on the waiver.

Does that present problems for people who may be on the spectrum, but may not meet those high standards for specific waivers across different states?

Lindsay: So, yeah, this is definitely an area where we need more research. We know that in most states the programs that have been constructed historically to support individuals with intellectual disability or developmental disabilities, which are often grouped together, have been based on, uh, older ideas of how intellectual disability itself as a specific IQ threshold were constructed.

So we know that programs that were formed decades ago as states were generating new ways to address the needs of the institutionalization and serving individuals with intellectual and developmental disabilities and communities that there were, you know, this criteria of an IQ of 70 or within, you know, two points plus or minus of 70 to enroll in programs.

And that there may be and are likely carry over effects of the fact that programs rooted their criteria in those IQ thresholds, that impact individuals in the autism spectrum differently. Right? Because autism does not carry with it, a requirement for IQ to be in any specific range. So I think that that’s important to understand, because if we have set up programs, to work in a certain way for a certain group, and we don’t evolve them as our understanding of groups that are included. If we don’t move that forward, then we will stay rooted in those historical definitions. And there are definitely good examples of how states have thought about new programs that are not based on that older model of intellectual disability or developmental disability criteria.

So for example, in Pennsylvania, we have two adult specific programs available for individuals aged 21 and over that do not consider IQ to enroll in those programs, um, for individuals on the autism spectrum. I think there is still likely work to be done across states to move forward their understanding of how they can take those programs that have been in existence for decades and bring them up to speed on how individuals with autism might be included, because we know that even if a person who is on the autism spectrum can drive or present in a different way that does not mean that their need for services and supports to stay in the community, to be served in the community and to be successful in the community are fundamentally diminished. They still may mean the services and supports that are substantial to be able to do that.

You know, a lot of that depends on individuals with autism, but also reflects our poor understanding of the trajectory of autism all across the lifespan and life course, that would help us to really have a strong basis for formulating building new programs, but also taking these older programs and bringing them along so that they are optimally equipped to account for people who are, are on the autism.

Brynne: I do have one more question about the Katie Beckett programs. So when we’re talking about states that do choose to engage with the Katie Beckett program within their Medicaid programs, I know for a lot of states that use HCBS waivers like exclusively there’s a lot of times there’s like a cap on how many kids are allowed to participate in that program.

Is that true with TEFRA too? My understanding is that either there are less caps or maybe even no caps?

Lindsay: Yeah. There are definitely caps on HCBS waivers, right? Like there are some HCBS programs waiver specifically that are, and there are a couple of different types of caps. So there are caps on the number of people who can be enrolled.

And that cap is typically established by the funding that has been allocated by state legislature to that specific waiver program. So if a state legislature votes or lands upon a budget whereby that waiver will be increased, then you’ll see more people that cap will move. Whereby that is in contrast to caps on services.

So some waivers either have a total amount spent within a waiver that is capped. So individuals can spend up to $70,000 a year and that’s it, or $30,000 a year. And that’s it. And then there are other waivers that are uncapped, where, where individuals are able to access services without needing to consider an upper end limit. The other technically sort of in the health policy world.

We think about and talk about other measures as, you know, cost control measures, the states use to understand how to navigate the cost associated with their Medicaid programs and how to plan for them because resources are not unlimited. States have a specific budget and must work within it. So one of the ways the states really manage another component of a cap is they use waiting lists.

And so across the us, there are more than 800,000 people who are on waiting lists for home and community-based service waivers with intellectual or developmental disabilities. And all of these people are known by the state to in most cases already qualify for the criteria of the waiver. So in, in, almost in the majority of cases, states actually do assessments to make sure the person would be eligible.

And then the person is literally just waiting for a spot to open up on one of the waivers and then they would be able to enroll. These waiting lists are a tremendous part of understanding the Medicaid landscape. We know that there has been legislation put forward, including by our sort of home state Senator, Senator Casey who’s very involved in Medicaid system reform and Joe Biden on the campaign trail was also referencing the need to end waiting lists. So if an individual is known to have a diagnosis that would meet criteria for a waiver, they’ve been assessed to otherwise meet the criteria needed for a waiver, then they should be able to enroll on a waiver that that was the fundamental premise of that effort and that, that dialogue, while Joe Biden was campaigning.

It will take a tremendous amount of resources to get those 800,000 people off of waiting lists and on to state programs. There are some other states to my understanding, Texas is one of them where there is no waiting list.

And so the only time that a seat in that case seeks to enroll individuals is if new slots open up. And so the 800,000 person number that we know are currently waiting for waiver slots in the U S may be a dramatic underestimate, especially if we think about a big state like Texas, where there may be many individuals who might meet waiver criteria and diagnostic thresholds for those programs, but are indeed waiting.

But they are not officially on a wait list. So I do think that waiting lists are a place for people to understand how state Medicaid programs operate. It’s also a very important way that you need to be planning. So waiting lists in many cases take many years. Um, it can take a decade. It can take two decades.

It can take six months. So there is not clear information by waiver nationally produced on how each waiting list is rotating or how long you may be waiting on, on each waiting list. Sometimes program officials and states may be able to answer that question directly, but if you’re trying to have for example, a waiver slot for when education services end early in the transition to adulthood late in the teen years, as an individual might be graduating from school or moving on from the special education system, then you should really be thinking about signing up for a wait list early in their life, because it may take such a long time to move from a waiting list onto a waiver program officially.

Brynne: That is a really good point. I’ve talked to a couple representatives from the Medicaid programs, and I think like Florida and Maryland, I know have very long wait lists like in 2020, I think they were just letting people on who had applied in 2012. And that’s a really good point about Texas. I’ve heard a lot of stories about parents in Texas who are refinancing their homes to afford services.

So even though Texas has this waiver program, that’s really interesting. I didn’t know that they did not have a wait-list.

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Joyce: So the waiver, is it affecting different kinds of states that don’t invest in this type of program or does it affect, like, how do you know? Cause I know like what is the waiting lists bad in Pennsylvania compared to Kentucky? Or, or how do you know? I don’t know. There’s a correlation between? Like I don’t know how to explain this.

Brynne: Yeah like if state budgets are limited, but like that’s true across the country. So why are certain states maybe more accommodating towards disability families? Are those policy decisions that are being made just in the prioritization of disabled people or is it really just every state’s budget is…

Are these states just in more financial trouble that they can’t provide these services? Is that kind of it, Joyce?

Joyce: Yes, thank you.

Brynne: Yeah, that’s a good question.

Lindsay: It’s a really important question. I, um, we don’t have good national data on the size of waiting lists, by state, by waiver, how those waiting lists are changing in terms of how resources are allocated or not allocated.

That is definitely a place where I think we are lacking a full set of information to be able to compare states to each other. The Kaiser family foundation does a, uh, report. So they have a website that you can see the waiting list for 1915 C Medicaid waivers specifically by population type again, they survey.

So this is not directly from state Medicaid roles. This is each state reporting on here’s where we think that we’re at. They do know in that report that Arizona, Rhode Island and Vermont do not have 1915 C waivers. They, instead use section 1115 demonstration waivers, which do operate differently.

And there, there is a way that if you’re in one of those states, you likely want to dig in and perhaps even ask Medicaid officials in your state. How, how do these programs work? What’s the waiting list time? There also groups across statess that, uh, are designated advocacy focused efforts to be able to help individuals and families navigate these processes.

So there are federal disability rights and protection and patient advocacy groups that are intended to help families navigate some of this information and are available across states. In Pennsylvania we have a fantastic resource in the Pennsylvania health law project, which seeks to document differences in these policies that are not Autism specific.

Certainly, the Pennsylvania health law project has a quite broad portfolio in terms of the Medicaid specific nuances that it seeks to document and help families navigate. There are also local level advocacy groups that typically have a wonderful understanding of for example, county assistance offices, and how to navigate specific nuances of policy at the local level to help families engage robustly.

So, so I think there are a series of resources to help understand what might be going on in your state or even in your community. And those resources are among the best to get to today. And what’s going on today as, as is always the case, our research to try and move forward the understanding here, especially around waiting lists and caps is going to be behind, uh, in terms of, you know, trying to catch up to understand where states are and what they’re doing.

Brynne: And now, we’ve been talking a little bit about, you know, younger kids who are trying, parents with younger kids who are trying to get their kids access. And we talked about, you know, parental income and some states will let you, um, onto Medicaid regardless of that parental income and some do not. But when we talk about transitioning to adulthood, Joyce, you probably have more good questions or know the right questions to ask better than I do because you’ve been through this.

Um, but how, how does that, how does Medicaid or healthcare access after hitting that age of majority work? If we’re just looking at kind of a kaleidoscope across the country?

Kristy: When thinking about, again, using national data, trying to understand state variability and the transition to adulthood, what I think is important to note is that a lot of ways that transition aged youth would qualify or young children and adults for that matter would qualify for Medicaid is through what’s called categorical based eligibility criteria.

So if they’re already involved in some way in another safety net program, like food stamps or cash assistance program, like SSA, some states will allow automatic enrollment or application for Medicaid and Medicare. Now, so what we’re seeing is that when states have HCBS waivers that might expand eligibility criteria, what happens is a lot of people are actually not enrolling through those safety net programs to access Medicare and Medicaid. So the state based waivers that are available seem to not only affect whether or not a young adult can transition to healthcare, but also if they’re transitioning to other types of programs.

We also know that the proportion of people entering these programs, both safety net programs, as well as healthcare, that the disproportionate amount of autism cases are actually transition aged youth. There’s definitely an evidence-base that warrants further investigation of why state variability in healthcare enrollment is so high.

Brynne: For disabled adults, I guess specifically autistic adults, if we’re talking about accessing a state program, is it Medicaid always or is sometimes is it Medicare that people are accessing and then I guess what’s the difference between those, those two programs and kind of their accessibility? Or is it only medicaid?

Kristy: From my understanding of Medicare and it kind of ties closely like SSDI versus SSI. Correct. But I don’t know how many transition age youth are dual enrollees. I don’t know if you know that Lindsey from your analyses or not.

Lindsay: Yeah, we have really interesting findings initial findings on this. So I think it’s important to make sure to have the backdrop of how these programs are administered at the forefront when we interpret this set of questions.

So Medicaid is by federal statute, always the payer of last resort. So that means that every other program gets billed first. And then after those claims have been adjudicated, then, then the payment will go to, to Medicaid.

And Medicare is administered at the federal level. Right? So, so the, the federal government administers Medicare, but Medicaid is generally split across states and the federal government whereby the federal government has a bare bones structure around the requirements for what all states must do, and then states have options to add in programs.

So for example, HCBS waivers are a great way that states look to pivot their service needs to the, their own populations. And we do know that they’re important ways these programs interplay. We know that there are at least our initial findings are that there are many more youth. So individuals who are of transition age as well as adults through and before age 64, when Medicare kicks in at 65, who are dually enrolled.

And so we have a lot of work to do to understand who these people are, what diagnoses do they have? How long are they eligible for both programs and what services they use? Before we’ll really understand how this is operating across states. But our initial findings are that these programs interact much more frequently than they, we thought that they had previously.

Brynne: Absolutely. And when you’re looking at your child transitioning, or even if you just have an adult child, you know, their needs either expand or contract, depending on where they are in their life, how would you decide which program is appropriate for them? I guess like when do you know? Okay, it’s time to go apply for Medicare.

We already have Medicaid, but Medicare would help us too, or we’re eligible for it, I guess. What are some of those standards that kind of determine which programs people are using?

Lindsay: Yeah, that’s a great question. So, again, we really only have preliminary analyses here and an initial understanding of how this might work.

So we had a paper out a couple of months ago where we used a dataset called the MM LEADS data. And this is by my colleague, Phil Benevidez, who has, you know, wonderful access to these data and a tremendous understanding of how these programs work as well. We use that data to try and understand differences in dual enrollment versus, you know, enrollment in other programs.

So Medicaid alone versus Medicaid plus Medicare. And we observed there were in fact tremendous racial and ethnic disparities related to differences in Medicaid only versus Medicaid plus Medicare enrollment. And that suggests when we link that with the expertise of some folks who we’ve engaged in across the nation to try and understand this phenomenon, that links to what is likely a need for additional resources to be able to access Medicare before an individual turns 65.

So what we’ve heard anecdotally is that there’s often a need to get an attorney and to navigate court based processes to appeal the initial application to Medicare to be able to gain access. And I don’t have good data to observe how often that’s actually true, but it certainly looks as though there may be people who are disproportionately affected by the requirements to access both Medicaid and Medicare. You know, I think that also begs the question who are these individuals? And again, we don’t really know yet. I think we’re, we’re really just now in next few weeks going to be tackling, what are the diagnostic profiles of these individuals? Where do they live?

And how does this look in more recent years? Teal’s data was from 2012 and we have some, some newer data we’ll be able to look at. Our data also from Medicaid and Medicare directly. And so there might be some granularity we can gain that MM LEADS data is specifically helpful because it includes reasons for enrollment, which we don’t see in our Medicaid and Medicare data otherwise.

Brynne: Gotcha, gotcha. I know that we’re like asking very state specific questions. I do want to ask, and again, it’s okay if you don’t have the data to answer, but when we’re looking at Medicaid access, particularly, I suppose, are there states for autistic children or adults that are kind of like…I feel like this is my perspective and it’s tainted because I live here, but I feel very lucky here in Pennsylvania.

And so like for me, if I was making a list, I feel like Pennsylvania would be at the top of that list for one of the best states, as far as access to Medicaid. Are there other states that are doing a really good job and then conversely, are there states where it’s just very, very difficult and very, very hard?

And we see these families and individuals taking a lot of the healthcare costs on themselves, like through their own personal finances?

Lindsay: We really don’t have good national data to compare how states perform as compared to each other. I think this is an area where we desperately need different sorts of research and for that research to be funded.

To be able to understand the impact of these state variations. I think we only really have an initial mapping of what these state variations are, let alone, you know, the, the robust research that would help us engage families across these seats to understand their experiences and unpack them to guide some of this.

We did, I had a research article that was published in 2019 that focused on Medicaid disenrollment during the transition to adulthood. And, you know, we found that disproportionately, autistic individuals were more likely to disenroll from Medicaid as they aged. And there were very interesting differences and profound effects of the category through which individuals were eligible for Medicaid, that impacted their, if they were able to get back on to Medicaid or to stay through the duration.

And specifically it looked like individuals who are on the autism spectrum would have to be very poor to be able to get back on Medicaid if they disenrolled during the transition into adulthood. And I think there might be some good news, bad news that accompanies that finding, and this was national work using Medicaid claims analysis.

I think that there is alignment between poor employment outcomes and individuals on the autism spectrum. So as individuals moved to being assessed for Medicaid eligibility on their own versus when they were assessed as a member of their family, that it may be more likely that individuals are, are going to meet income thresholds because we know employment outcomes, which would provide access to private health insurance, as well as income, are very poor among this group.

The bad news is that you have to be very impacted by income thresholds in order to meet Medicaid eligibility criteria. And I think it begs, you know, links us to some of Kristy’s research questions around, are there a more robust set of needs that these individuals and or these families are experiencing around food insecurity? Around access to resources that could support the continuum of their life?

That may not be autism specific. We should be making sure that we are understanding across the board, what individuals and families need to be safe, to be increasing their quality of life and supporting their journey.

And I think that is a very important set of research that we have yet to embark upon. I feel like

Kristy: I feel like we’re always in this loop in our research where we’re just saying, we need the data. We need the data, we need the data. We need an empirical evidence first kind of thing.


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Brynne: As you were talking Lindsay, something that popped into my head is just this whole idea of, Yes, when you have autism, you have medical needs. Right. But these systems that we have built around us in order to access those medical needs, like you were talking a little bit about how, like your income has to be extremely low.

Part of the reason it might be difficult to get or maintain a job when you’re autistic is just the ableism that we find in our society around us, right? This is me talking, this is not Kristy and Lindsay’s data talking here just to be clear when we talk about, you know, well, if you want to access the health care, there’s a certain dollar amount that you can’t make over.

It’s, it’s kind of like a form of forced poverty. And so Kristy, I am very interested in hearing about your work that you do with cash assistance and food stamps, and kind of some of these other programs that people access, because, it feels like yes, autism is a part of it, but also these, these systems that we have set up with all of these income caps and sometimes asset tests.

You might be forced into a position where you need to access these programs more often. So I’m very interested in the interplay between all of these things.

Kristy: Oh yeah, absolutely. Um, and again, it’s just, it’s a very underdeveloped area of research, but I think it’s becoming increasingly important, especially in light of COVID and its impacts and the disparities that exist in terms of financial security.

It’s definitely, I think becoming consciousness and the importance of these issues is definitely increasing, which is promising.

Brynne: Absolutely. We did have one listener, bring this method of using the Medicaid funding that her child qualified for, that we kind of hadn’t heard of before. And it looks kind of neat.

It’s called self-directed budgeting. And so what, what we’re used to using is kind of like the standard agency model. Like we’ll go in and we’ll access an agency and then they’ll just bill Medicaid directly. And what this listener does is she uses the self directed budget model. She has access to all of these funds and then she allocates them herself and kind of builds her own child’s programming.

I’m wondering if that’s a common thing and she’s in the state of New York and I’m not sure if that’s just like a New York thing or if that’s an everywhere thing. Um, if that’s an option to people across the country, or if, if you guys might know any more details on kind of the difference between those two approaches to using and accessing Medicaid?

Kristy:I’ve worked as a direct support provider, actually in a consumer directed care. So to give you some history, when we’re thinking about independent living services for people with disabilities and the independent living movement, deinstitutionalization that occurred in the late seventies for people with disabilities, with that deinstitutionalization, a corresponding movement called the independent living movement and the person centered planning movement kind of occurred.

In conjunction with this larger initiative to implement an increased community-based living. So typically in the United States, and again, this has been adopted in several other countries. There’s basically two models to provide independent living care or supports for people with disabilities there’s consumer direction or, um, self directed care.

And then there’s the agency based care. Agency-based care, like you said, is typically what we think of when we think about independent living services, basically it means that a person who is deemed eligible for receiving residential services is referred to an agency of some sort and the agency develops and runs the home.

So in terms of like staffing and spending and support, the agency’s really making all the decisions. So in light of this movement to increase the self determination  of people with disabilities, consumer direction is another continuum, continuum of care, that’s becoming increasingly popular. And essentially it’s a huge range in terms of how self-directed these services can be.

But basically it’s a continuum, meaning that consumers can either have a role in developing their own plan of care, or they can have complete control over their services, their choice of providers, their payments, their staffing. Consumer direction, or self-directed care is Medicaid funded. And again it varies based on different states.

I know Pennsylvania’s HCBS waivers, I think have self-directed care embedded in their waivers. I think Lindsay can speak more to that, but when we’re thinking about a self-directed care it can either be professionally monitored, which means that the person can hire and fire the professionals that are serving them.

But they’re actually getting guidance from their care managers.

(doorbell rings, dogs barking)

Or it could be what’s called cash payments where a person with a disability has complete access to. Sorry, my dogs are yelling, has complete access to all their money and then they can go ahead and run the home on their own. And it is available for both young adults, children, and adults.

And it’s also available in the non-disability world in terms of again.

Brynne: When we’re talking about this, is there like a method that… Is it just kind of like a personal preference thing? Or is there a method that’s like ethically better or easier for families to use or is it just kind of a personal preference thing?

Kristy: It’s a personal preference thing, but then there’s also some eligibility standards and criteria in terms of whether or not someone can have self-directed care.

So in terms of like philosophically speaking, we, we meaning society who supports the consumer direction, kind of falls under this idea that we always try to promote consumer directed care to the best extent of possible based on that person’s abilities. And then the degree of oversight is kind of based on whether or not the person has financial literacy and is deemed competent enough to, to run their own finances.

Brynne: Our next series of questions is just about, you know, again, I feel so lucky to live in Pennsylvania. That’s not to say that, uh, I never have had to fight a Medicaid claim or that I have never, you know, just found myself incredibly frustrated at a work conference, trying to work out, my kid’s still autistic going to be autistic forever, but I’m going to go through this requalifying interview with you for the fifth time.

Like, I’m not saying that it’s completely easy, but I do appreciate how much access that we do have here relative to other places in the country. And so a lot of times when moms ask us about what, what to do when they live in a state where there’s just no access, or they just can’t get these services for their child without paying out of pocket, we tell them, you know, one of the best things you can do is just move to a state with better coverage.

But that’s a very problematic answer because not everyone can afford to move. Maybe you don’t want to leave behind your social network. Maybe, you know, that’s where your family’s from and everybody’s there and that’s kind of who helps you in your day-to-day life. Do you have any insight on what people can do if they live in a state where, you know, they’re just not able to access these necessary healthcare services?

Lindsay: That’s a good question. It’s a tough question. I think the more that I’ve learned about the resources that are available to help navigate within states, the more impressed I’ve been that there is often infrastructure, so a protection and advocacy group, or, you know, resources like Pennsylvania health law project, or sometimes even that one person at a local county assistance office who knows the ins and outs and can help provide insight to nuances to, to these processes and systems.

I don’t think that makes it any easier in states where there are not possibilities. And, and so I think it’s one thing for things to be available, but unknown. And another thing, if they’re just completely unavailable. I think the only way that we’re going to be able to understand those differences is to do more research on what states have, what they don’t have and how they operate.

And. Uh, that work has yet to be done. Let alone for us to be able to have findings from that work that we can translate to support families and states in moving forward with their own operations to increase equities across populations and groups. I do think there are concerns about which groups are more adversely impacted by these lack of options.

And that is in particular, an area of research that has yet to be really fully developed. But unfortunately I think there are no good answers to this question. If it doesn’t exist, I’m not sure how a family would navigate to it. And then there, that comes into question advocacy efforts to try and change what’s happening in your state.

And, and that takes emotional labor, that takes time and energy. For families and individuals who are working so hard every day to meet specific goals, it’s unclear how much bandwidth there is to participate and support those processes. And so I think it’s really challenging to say, you know, the advocacy is the way forward when you know, advocacy is really, really hard work.

Joyce: One thing I will say too, is educate yourself. Sometimes you have to do your own research to find out this information, because even in the state of Pennsylvania, there are many working families that are not aware of the loophole and are still paying out of pocket. And I have had friends and family that live in different states, that were not aware of programs that do exist in their state.

So my suggestion would be to research, do your own research, educate yourself because there might be programs out there that you might not know.

Brynne: Absolutely. And I think that’s such a difficult thing about healthcare in our country being so decentralized, especially when it comes to these state programs, is that it’s very, it’s very difficult for us to sit here and say like, there’s nothing that we can say universally for all 50 states.

Even when we’re talking about advocacy efforts within states, if you’re looking for groups to connect with, that’s going to be different for every state, right? Because it’s a, it’s kind of a different battle in every state. And I’m so glad that you brought up that emotional labor part, because we’re talking about people who have to, you know, who are living this every day.

And then to have to, on top of that, somehow feel like you’re called upon to also go out and change the world and change the system. It’s a huge, huge burden. I think that’s why a lot of times we just end up telling people like it sucks, but what are the? Like if you really want to get access, you might have to consider moving.

And again, that’s not going to be possible for everybody, but just there really are not a whole lot of good solutions here.

Lindsay: But I think there is hope. Right? There’s been a tremendous…and I don’t mean that to, you know, decrease the emphasis on how frustrated people can be or how terrible I can only imagine it would feel to need something for yourself, for your family, for your child and not be able to get it.

But I do think we’ve seen states change in the wake of increasing autism prevalence and, you know, as we’ve learned more about the needs of this group, we have seen states in a more piecemeal way, make changes to how they do what they do. And so I think there is opportunity and, and I think we can be to some degree hopeful for the future in that states will continue to take the needs of this population into account as they structure what programs they’re going to build, the programs they’re going to maintain and what programs they’re going to grow.

Joyce: Yes, definitely I do agree. I do agree because there’s many states that have laws that require private insurance to help cover this. And there are others that don’t. So I feel like we might not feel like it’s a hundred percent, but I think we’re getting there. I think, you know, 10 years ago, 20 years ago, when I have have my daughter versus now is completely different. So we are changing.

Lindsay: It’s funny. I was actually sitting in a meeting of Philadelphia city council, where we were talking about some of the needs of the community. And I was talking with a colleague shortly after who’s a parent of an adult on the autism spectrum. And she was saying, that the dialogue during that conversation about needs sounds exactly what the dialogue they were having 20, 25 years ago, and this is someone who’s very in the know about what’s available about what, what can be possible and how to access it and, and all, all of those very specific pathways. And I think that that should be a way that we need to continue to move forward this research.

To think about, as one of my very close colleagues likes to say to travel in packs so we can be supporting each other in this journey when individuals need to turn more inward to the needs of themselves or to their families so that we can support each other in ways that can help with system reform and to improve upon all of the really excellent questions that you’ve asked us today.

Brynne: Absolutely. I love that. It can be easy to get discouraged sometimes, but there are so many reasons for hope. And I think working together is just a very powerful way to do things. Now, before we go, I’m going to have two questions for you guys. The first is that Joyce and I don’t know what we don’t know.

So do you feel like there’s anything important for parents to know today that we just haven’t addressed yet? Or haven’t talked about.

Lindsay: This really hits on the major problems of navigating systems. I mean, I think there is a whole other half and maybe two-thirds of the picture here that is private insurance that has its own set of complex issues.

And then also families that don’t have any coverage who are navigating out of pocket. And other means of get trying to access the care that their children need. So I think the story sort of goes on and on, and as long as our systems are as siloed as they are, these conversations are, are difficult to weave together, but the reality is that families have to weave them together.

And so I think any places where we can be pushed to think about those complexities and the research environment to generate useful findings, try and work together, to identify system level solutions that can really support across what families are experiencing, that’s definitely a primary target for where we should be.

Kristy: I would also say, and again, this is something that it’s not always available. And I think if there’s a huge shortage, if you’re a parent, try to find a benefits counselor, maybe through a caseworker or through special education or whatever, it may be. Try to leverage your social networks as much as you can to find someone who is trained in benefits and benefits applications, because I think having that central person being able to tell you how to integrate, you know, Medicaid applications with all your other services and supports is really useful to help. Cause it’s, I think it’s really hard to navigate that online. You can kind of be online for hours and not really know what you’re eligible for.

Brynne: Absolutely. That level of expertise is just something that you can’t take for granted. I feel like with everything online, we do sometimes feel like we can just go research stuff on our own. Right? But that level of human expertise of someone who works in the field, who interacts with all these programs regularly, that can really, really be invaluable and just save you years worth of sitting in front of your computer screen, trying to research it yourself.

Kristy: Yes. I teach masters of social work students and that’s actually one of my assignments I give them is I say, try to apply for food stamps. And these are graduate students in social work, and a lot of people can’t do it. So how are we expecting community members to do it? I think, uh, VR also, um, would have a good connection to benefits counselors and they would have a lot of information about Medicaid, not necessarily VR itself, but I think identifying who in the community would, would be a good resource.

Brynne: Absolutely. And my second question is just, I’m wondering if you can tell us a little bit more about the Autism Institute and how parents and Autistic individuals themselves can kind of engage with the work you guys are doing there. Like, how can our community support what you’re doing or how can they benefit from what you’re doing, as well?

Lindsay: Absolutely. So I think that’s a multi-faceted answer, you know, the Autism Institute has with our autism and public health focus, a variety of researchers who are looking across many of the elements of what we discussed today from the co-occurrence of intellectual disability and autism, mental health and autism, early detection of autism in childhood, which is in and of itself a quite complex process with a set of needs.

The Autism Institute, I would encourage folks to check out the website. There’s often announcements through the website and the social media around studies that are recruiting at the Autism Institute. There are two initiatives I’d also highlight that are based in the Autism Institute. And I would really encourage folks to check them out.

The first is the autism services, education, resources, and training collaborative, or the asert collaborative, which is funded in Pennsylvania by the department of human services and the bureau of supports for autism and special populations. And asert has a warm line that families can call to ask about benefits and to be able to navigate the available programs in Pennsylvania.

That I would encourage anybody to call, email, uh, that lines available in English and in Spanish. The other is the Philadelphia autism project, which operates in coordination with the asert collaborative to provide resources to the community, engage community partners. We have an annual conference and community seed funding available in Philadelphia that families can use to think about support and advocacy opportunities.

So I would really encourage folks to check out asert, which is at paautism.org and Philadelphia autism project, which is at Phillyautismproject.org. Those websites link to each other as well, and check out their social media. There are great resources in Pennsylvania and often have tools that may translate to other states as well to navigate service systems.

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Joyce: No data about this. Like, I, I was very shocked, but you know, we have to make a change.

Brynne: Definitely and that was something that we really wanted to bring to you guys today was just to tell you, like, which states are the best, which are the worst. And we can’t comprehensively do that because sadly the data doesn’t exist, but we’re really glad that we know that now, because now we know, you know, another thing that we can push and advocate for is for the research on these issues.

Also, I do put together a Medicaid guide for children on the spectrum every year, except in 2021. Um, I didn’t do it because the pandemic kind of took over my life. So I have a 2020 version of it for you guys. You can access it by either joining the Mom Autism Money Facebook group, or I will put a link in the show notes that takes you to the Femme Frugality. My, uh, website is Femme Frugality before we started doing Mom Autism Money. That’s where I existed. So there will be a link to Femme Frugality where you guys can sign up and get a free copy of that. Again, the information is from 2020, but if you sign up, whenever we do the 2022 version, you’ll be able to access it.

And it tells you, is there a way to access Medicaid in my state, if I make too much money, like can my kids still get on Medicaid? And some states, the answer is yes. Some states, the answer is no. And some states the answer is it’s complicated. So that guide will kind of just take you through that process for each state.

It was interesting to learn some of the history though.

Joyce: Oh, yes. It was interesting. It’s just frustrating to know we live in a country that no one has absolutely no data.

Brynne: And that’s a huge reason why we wanted to make this show though, too, was just because there is a lack of centralized data. And when you look for stuff online, like in personal finance, I feel like in traditional, mainstream, personal finance, there’s so much stuff you can find just by Googling.

But when we start talking about, okay, I’m a parent of a disabled child, how do I need to run my finances? Oh my gosh. Is that information difficult to find like Google doesn’t help.

Joyce: And because each state they have all different laws and regulation. It is not like that. Like when we talk about finances, it’s basically the same thing, the same concept.

Like you follow the steps, you’ll be okay. But when it comes to when you have a family that has children on the spectrum or then it’s completely different, because of this journey of recording these episodes, I have learned that some states tax a lot, some states don’t tax. We can have this, but you can’t have that depending on each state.

So I am learning that it’s not like one size fits all depending on where you live at in the country. And that’s sad. It’s really sad.

Because there’s no data to support any of this stuff either. Like what state has the worst?

Or what state has the slowerst waiting time? Or what state has the fastest waiting time? You know, so hopefully we’ll get some answers. That’s what the goal of this podcast is. I mean, again, this is why voting is important, people.

Brynne: Yes. Yeah, stay informed, vote. Also in season two, we know that we’re going to start exploring some specific states and specific state Medicaid programs. So while it might be difficult to get a bird’s-eye view, we are going to have guests on that are intimately familiar with the Medicaid programs in individual states.

So that’s something that we will be starting. I mean, there’s 50 states and there’s also other things we want to talk about. So it’s going to take us awhile to get through to every one, but we will try for you guys. We will try to get that data and information. We do want to just really, really thank Kristy and Lindsay for coming on and sharing their expertise because without them, I don’t know that we would know what we need to look for moving forward.

So I appreciate them lot. And we also appreciate you guys so much. Thank you so much for listening to this episode. If you enjoyed it, please leave a five star review on whatever podcast listening platform you’re using. You will also want to make sure to check out our Facebook group this week or that link for Femme Frugality in the show notes.

Just so you can get your hands on that Medicaid and autistic children guide. It goes through every state. Might be able to help you out a little bit. And we’ll get updates for you guys in early 2022 as well. All right. Thank you again.Joyce: Bye!

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