Today we’re back with researchers from Drexel’s Autism Institute to explore the intersections of race, poverty, and health outcomes for Autistic kids. They covered this topic in their 2022 National Autism Indicators Report.
Some of the findings you might have predicted, like the fact that no matter how much income you make, societal structures around race may negatively impact your health outcomes.
Others may be more surprising, like the fact that in many cases, Autistic children from middle-income households actually have some of the worst health outcomes.
Let’s dig a little deeper into these findings, and explore some of the potential research and policy implementations that might help us do better.
Read the full 2022 National Autism Indicator Report.
Learn about other research topics and community outreach at the A.J. Drexel Autism Institute.
Check out Autism Navigator from FSU for more resources navigating systems.
Brynne: Welcome back to Mom Autism Money! So, do you all remember back in Season 1 when we talked to researchers at Drexel’s Autism Institute about some of their studies?
Well, today we’re back at it! The Autism Institute releases its National Autism Indicator Report annually, and each year they focus on a different topic. In 2022, the topic was “The Intersection of Autism, Health, Poverty and Racial Equality.”
If you listened to last week’s episode about disability discharge for federal student loans, you heard the teaser that Autistic kids from middle-income homes have the worst health outcomes over the course of their lives. We’ll delve into the reasons why today, along with other discoveries in the report, like the fact that there are health penalties when you’re a racial minority regardless of family income.
Joining us today to discuss the report are researchers Kristy Anderson and Anne Roux.
You may remember Kristy from Season 1 when we talked about Medicaid. Since we last spoke, she has left Drexel for a position as an Assistant Professor at the Florida State University College of Social Work, though she does still collaborate with the Autism Institute. At FSU, Her research focuses primarily on social policies and the financial security of children and adults on the autism spectrum.
Also joining us is Anne Roux, research scientist at the Autism Institute. Anne has a master’s degree in public health from Washington University in St. Louis, where she completed training in health communication and participated in a NIMH pre-doctoral fellowship in Social Work.
She also holds a master’s degree in speech-language pathology and has 15 years of clinical experience in autism early intervention. Her recent publications include journal articles on various postsecondary outcomes for adults on the autism spectrum and autism screening for underserved populations. Anne is an author and co-producer of the award-winning National Autism Indicators Report series, which is what we’re here to talk about today.
Without further ado, let’s catch up with Anne & Kristy!
Brynne: Welcome to Mom Autism Money. We are here today with Kristy and Anne from Drexel’s Autism Institute. How are you guys?
Kristy: Good, thank you. Thank you for having us.
Anne: Yeah, happy to be here. Thank you.
Brynne: Today we’re gonna be talking a little bit about the Autism Indicator report that you guys put out.
Before we get into it though, Kristy, I know we’ve met you before, but we’d love if you could just refresh everyone’s memory about who you are and what you do and kind of how you got into this field?
Kristy: Yeah, absolutely. So my name’s Kristy Anderson and I, up until just the last two months was at Drexel’s Autism Institute for about seven years. I’m a social worker by training and really a lot of my work kind of drawing from this more social work perspective and and approach to understanding autism really tries to delve into these ideas of autism and intersectionality.
So understanding how social welfare benefits can help to improve the lives of families and there are children and adults with autism who are really living at that intersection of poverty and trying to better understand how policies can better promote healthy outcomes for this population, and really just kind of fell into this work as I became more familiar with the research that exists and realizing that there is a little bit of a gap up until the last few years or so in really trying to delve into this subgroup in more detail.
So that’s where a lot of my passions come from, and I know a lot of my, uh, colleagues and scholars feel the same way. So it’s been really moving forward in a, in a productive way, especially last few years or so. Oh, and, um, I should say, so currently I’m, I am no longer an active, uh, employee at the Drexel Autism Institute.
I’m actually a, a professor, new assistant professor in the college of Social work at Florida State University, where I’m continuing this work and, and building some great infrastructure of support here. And I continue to stay engaged with Drexel University as well in and their current projects.
Awesome. Thank you so much. Anne, we’ve known you for a while, but this is the first time you’ve actually been on the podcast. So we would just love if you could tell everyone about your role in this process and how you kind of ended up in this line of work.
Anne: Absolutely. I think, like Kristy said, autism research is relatively new compared to a lot of other fields, and so I think many of us came to this field in a kind of a zigzag, circuitous route, and my story is similar to that.
So my background is in speech pathology, and I had started off my career doing autism diagnosis. Then became a parent and left service provision and went into eventually helping families in Missouri to find information and resources about autism families like mine. Within that work, I became involved in legislative activity and sat on our state’s Autism Commission.
I had an opportunity to meet wonderful people who were working on really great projects, but one thing I noticed was decisions and funding often were not being made based on evidence basis. And that interested me because I wondered then how to impact that. So I went back to school and uh, got a degree in public health.
One of the things that I learned through that pathway is that there was not a lot of research out there to inform our evidence base and therefore our policymaking decisions. And so that led me to go into research and I’ve been privileged to work with Kristy and other people through the Drexel team for about 10 years now.
So I’m a research scientist on the Life Course Outcomes Research team at Drexel. And one of the things that I have worked on is the National Autism Indicators Report series that we’re gonna talk about today.
Brynne: I’m wondering if you can tell us a little bit about this report and its history, how it got started, what its purpose is.
Anne: Sure. So when I entered this field about 10 years ago, there was really hardly anything known about what happens after childhood to people on the autism spectrum. So there was no place to go if you wanted to know how life turns out, what rates of employments were, what kinds of services people were using.
We knew a lot about how that was going at the child level, but not beyond that. And so we really set out to start a report series that initially focused on that transition age period to put out basic indicators for policy makers and people who make decisions that need to know where we stand, sort of where our roadmap is.
We, you know, when we started this report, we often talked about a lack of gauges or indicator sbout autism, and we often equated that to driving without a dashboard, without, you know, all of the gauges that are on the dashboard of your car that tell you how much gas you have left, tell you where you’re headed, things like that.
And so this report was really aimed at filling that hole so that people could make decisions. We started in 2015 with our first report about transition into young adulthood. I should also mention though, that one of the things that was super important to us when we started the National Autism Indicators Report series was that we were producing information that was actually usable to people and understandable to people.
So right from the gate, we tried to base these reports in questions that were meaningful to the people that we were writing about. And we did that by involving people in our advisory committees and as co-authors on our reports, autistic people. Then we also tried to write in a way that was understandable to a non-scientific audience, which represents a lot of people who make policy, make decisions.
They aren’t trained necessarily in understanding things like epidemiology and statistics. So we tried to explain and produce graphs that were things people could really use in their daily work.
Brynne: Now this year, the study focused on the intersection of poverty, health, and race. I’m wondering, Kristy, specifically, if there were any findings that kind of surprised you with this new edition?
Kristy: Yeah. Um, absolutely. So, you know, from like a theoretical research perspective, a lot of the findings that came out of this report aren’t super surprising in the sense that we realize that being BIPOC or non-white Hispanic individual tends to lead to disadvantages, as well as living in, uh, lower income households and living in poverty also leads to similar disadvantages.
I think what was really important about this report is that it really disaggregated those two concepts. So when we think about a lot of disparities, research that exists in autism, poverty and race for some reason tend to be kind of clumped together or they’re just kind of included as variables to consider, but not re like variables of interest.
And I think what really surprised us, uh, in writing this report was this realization that the impact of poverty on health and health insurance access and healthcare access. That socioeconomic disparity looks different based on the child’s race and ethnic identity and specifically really kind of pointing to the fact that they’re really worthwhile investigations to look at separately.
I think what was also really surprising about this report is that we were able, because of the data we use, the National Survey of Children’s Health, to look at differences in health outcomes and healthcare use outcomes across federal poverty thresholds. So essentially, instead of looking at high income versus low income, we were able to compare high, middle, and low income households, and what we found is that when we look at these socioeconomic disparities in health outcomes among autistic youth, that these disparities are much wider when you’re looking at middle and high income households versus lower income.
So the idea that those who live, but which we kind of conceptualize as 200 to 400% of the federal poverty level, meaning middle income or so, actually had poorer outcomes relative to, in some cases, individuals who lived below the poverty line. So really trying to tease out this, this realization that it’s not a strictly linear relationship, that the relationship between household income and all of these health outcomes is more complex and it needs to be examined in that nuanced fashion.
Brynne: I don’t know if there’s an answer to this yet, because I know that like the data just came out with this report, but do we have any idea why that might be? When we’re looking at middle income households that we’re seeing the same or worse health outcomes?
Kristy: There is some preliminary research that’s been conducted.
Um, I know Susan Parish’s work focuses a lot on this idea of, of material hardship and access to healthcare use. And when we talk about material hardship, we’re really talking about the ability to get your basic needs met, like ability to afford food and ability to pay your, healthcare bills and to pay your, you know, electric bills.
And what that research has found in our preliminary work is really this idea that middle income households for youth with autism might be especially at risk really, because they either are not eligible for safety net benefits like food stamps or those other types of resources that help with hardship and health, they may not have access to Medicaid, which we do know that public health insurance tends to improve healthcare access over private or uninsured households.
And so that kind of like may speak to the particular vulnerabilities from middle income households versus lower income. And then when comparing middle income households to higher income households is really just comes down to available resources that those living, you know, in working poor middle income households don’t have that disposable monetary resources to, you know, afford extra access to, um, intervention research, things like that.
Anne: I was thinking the same thing, that this is not the first report that we’ve done that has found this interesting and encouraging finding about families who have access to Medicaid and therefore have access to early periodic screening, detection and treatment.
That perhaps that is a enabling their access to care. I don’t think that it is quite as simple as that. I’m sure Kristy would agree. We find that Medicaid may be beneficial. At the same time, it’s not that there are not disparities by race ethnicity in Medicaid, and we know that it’s families who understand how to navigate the system, who tend to do better in accessing resources that are made available to them through things like Medicaid, Medicaid waivers, other programs like that.
Joyce: This study, does it provide, is it break broken down by state or is this is just in general?
Kristy: That’s a very good question. Cause when, when you’re trying to examine Medicaid’s impact on health outcomes, of course it’s gonna vary from state to state because Medicaid policy vary vastly from state to state. For the purposes of this report, just given the nature of the data and you know, the sample size wasn’t large enough for us to actually disaggregate or separate the data out from states. But at Drexel, we have been doing more nuanced state level analysis using Medicaid data. And I don’t know, Anne, if you know of anything else that really speaks to that, the state level differences in Medicaid.
But this report was just strictly a national report.
Anne: In general across all kinds of programs that individuals, autistic individuals and their family members access. Um, like vocational rehabilitation, SSI benefits, Medicaid. We see great variation across states no matter what program it is that, that we look at.
One of the things that we try to do though, is to find innovations and to find states who are better performing in this case, you know, maybe are doing a better job at conducting outreach to marginalized families or things that we can learn from and replicate across states.
Brynne: When we’re talking about health issues, what were the specific health issues that were found to be negatively impacted?
Kristy: You know, to really talk about the, the measures used in this report. Just to give you some background information about the data we used, so the National Survey of Children’s Health, it’s a very comprehensive, nationally represented data set. That includes a lot of metrics related to health, quality of life, adverse childhood experiences, things like that.
And when the data’s collected at a national level, the reports are actually on parents. They’re proxy reports. So the caregiver of a child with a history or current diagnosis of autism will report autism severity, functional limitations, overall health and things like that, which have been shown to be pretty valid and reliable measures of overall health.
So for the purposes of this report we drew from, again, these are parent reported outcomes of autism severity, which was like mild, moderate, or severe functional limitations. And then we also reported just, you know, overall health on a, on a Likert scale, which ranged from fair, poor to excellent. We also included some indicators, what’s called children with special healthcare needs measures, which really try to get at the extent to which the child needs medical services or, uh, prescription medications at the same level or at greater levels than their peers. So really trying to understand service needs as well as they relate to their specific healthcare needs.
Joyce: This study, how long did it take to gather all the information? Was it a year, a couple months?
Kristy: For this specific studie, this dataset was actually not collected firsthand by us. So this is an existing dataset that researchers can access and analyze just based on their own specific research question. So for the purpose of this report, I believe we combined data from 2018 2019 dataset, which means that the data was made available to us and data was collected within those two years.
And so what we did is we combined the reports from those specific years.
Anne: This is a national survey, so it’s one of those where they call, uh, random households and ask them sets of questions. And one of the sets of questions has to do with children with special healthcare needs if they identify somebody in the household that has a special healthcare need.
So that’s where it came from. And I was gonna add to that all of our national Autism indicators reports are based on national surveys like these. So when I talked about earlier that 10 years ago, 15 years ago, there really wasn’t access to information like this. It’s not because it didn’t exist. It’s not that no one had ever asked or cared about how individuals on the autism spectrum were doing, it’s that people were not publishing information from these large, uh, national surveys like the one that Kristy used.
And so that’s something that we have really tried to make use of across these reports is taking the information that is already out there that most, in most cases was federally funded and analyzing to see what we learn about the autism group in each of these surveys, and then publishing that so that people have access to the type of information.
Joyce like, like you said, you went to go look for it and couldn’t find previously to our publishing this report.
Kristy: Yeah, sometimes it’s out there in academic journals, but it’s hard for people in the general population or even policy makers to go find, cause they don’t have access to journals like that and it, they
Joyce: Or to understand.
Anne: Absolutely to understand academic language.
So. We, you know, really try to avoid that. And myself, I’m a user, I’m a parent. I look for this information and a lot of times I can’t find it either. Like understanding what is vocational rehabilitation and how does it work, or what is Medicaid and how do you access it? Or wanting to know how different subgroups or families are doing.
It’s really important to be able to find that. And be able to, to read it. So.
Kristy: And I think that’s the, the lovely thing about, you know, Drexel’s Autism Institute has really made a concerted effort to disseminate research findings to a broader audience, not just through these reports, but also through online platforms as well.
And I, I think that’s a real testament to the efforts of the team.
Joyce: Yeah. And it also benefits myself. I have respite services to have a social worker or a case manager read this report and understand. You know, for agencies to understand it and help the community better. So I do agree with it should be out there and understandable for some of us to, when we research and to understand.
So when we go visit families or help another family, we have that information and can use it so, thank you.
Kristy: Absolutely. Yeah, and I, I think also, you know, just having these national statistics to show that the autism population is very diverse and actually more heterogeneous than the lay public might quite know based on just the representation of autism in popular media and, and things along that lines.
I, I think, It’s important for people on the front lines to really have that kind of exposure to the understanding of the heterogeneity that exists before moving forward with providing services. For sure.
Brynne: There was one aspect of the survey, uh, in the summation it, it said this, that over half of autistic children lived in low income households.
And one in four was living in poverty, a higher rate compared to children without autism spectrum disorder. Children living in low income households were more likely to be non-white relative to the general population. And when I saw those numbers, it confirmed a lot of what I see in real life. But it’s still just overwhelming.
Joyce and I have some ideas and suspicions about why that might be, but before we speculate on anything, I’m wondering if your research revealed any reason behind those extremely high numbers.
Kristy: I wish I could say that our research has the answer , because that would be a real big pat on pat on our backs.
But, um, we don’t really have empirical grounding to, to truly identify or conclude what the mechanisms driving these high prevalence rates of poverty are in the population. Theoretically, there’s this broad theory out in the world of research, not in autism, but disability broadly that disability can cause poverty or poverty may lead to disability, but we don’t quite know which one is right or which one is dominating in terms of driving that relationship.
So really at this point, we are at just like a speculation stage, but based on empirical findings from, you know, our scholars in the past.
Anne: There is research that does talk about things that, you know, again, these are not earth shattering findings, but families who are raising children on the autism spectrum tend to have higher costs of meeting needs, like service provision or extra doctor visits.
All those types of, of needs. But then also we know that families may have a more difficult time being able to maintain the level of employment that they want to engage in. And so, you know, it might be that one parent has to reduce work or another parent has to stay home. And we also know that more these children might be from single parent families.
And so there are a whole host of reasons as to why. It’s just research wise, it’s hard to pinpoint exactly what sort of all the ingredients put together which ones are contributing the most.
Kristy: Yeah. And I would also, you know, to that point as well, when thinking about these rates, so this specific report, so it was 2017 through 2020 data.
So relatively recent, in the past decade or so, there’s been a, a real concerted effort to expand diagnostic services to more marginalized groups, whether it’s rural areas, BIPOC families, low income families. So it, it could also be that it might appear that the autistic population is becoming more heterogeneous.
Or that diagnostic services are just now reaching populations it wasn’t reaching in the past as well. So it’s kind of this it. It’s just this myriad of factors that really will have to require extensive teasing out in terms of understanding the causal mechanisms as driving this finding.
Joyce: Brynne, what do you, what do you speculate?
I want, I wanna know.
Brynne: Oh, my first thought just went to maternal income. We know that the pay gap, I mean, there’s a pay gap for women, right? So there’s a gender pay gap, but then on top of that, we know that when disability is added to the mix, when you have a disabled child, maternal income goes down and then it goes down by almost double if that diagnosis is autism.
And so, uh, that, that was my first thought was that maybe maternal income is contributing, but it sounds like there’s a lot of factors, and that’s a really good point that we have better diagnostic tools and better outreach to certain communities now than we did before. So that can be influencing it, too.
I didn’t even think of that.
No, but I think you’re absolutely correct, um, Brynne, that yeah, it’s when thinking about the, the financial, the, this idea of Family Financial Burden, which was a different report that we published a few years ago, um, we do find that. And we also find that parents of youth with autism, like Anne said, have a disproportionately higher rate of having to reduce their employment work hours or income to care for their child.
Anne: Or just if they are going to work and then have to find childcare, that can be extremely difficult. And then especially once children hit that sort of magical age, like 11 or above, where they’re less likely in the general population to be going to childcare, then it gets even more difficult to try to find a place that is, uh, safe and quality for your child to go while you’re working.
So that’s another huge factor, too. That whole piece about finding and help seeking is so important to think about because if you have less access to information or resources or it’s just like not coming up in your social network of knowing, you know, you don’t have a circle of moms maybe who can point you to to benefits you need or services or where to find childcare, then it just becomes really difficult to try to navigate and find the help that you need.
Joyce: And you know what? I think also depending where you live in the country, where to find that, those, you know, services. Yes. And again, I always said I am very lucky that I, that I live in the Southeast of Pennsylvania because I, I have the services. I had the community to help me out, too. I know that I am lucky and privileged, but there’s others that don’t have the same, and it’s kind of sad that we live in the same country, but it’s not the same for them.
Kristy: It’s not equitable.
Joyce: Yeah, yeah. Correct.
Brynne: Now, another thing that the report found was that poverty and race and ethnicity, those things can sometimes act in combination to contribute to health inequities in autistic children, but sometimes they can operate independently. So you’ll see race and ethnicity affecting health inequities.
Even if the family’s not living in poverty or we’ll see poverty impacting a family, even if they’re not facing racial or ethnic biases in the healthcare system. I’m wondering if we could talk a little bit about that, about what happens when those things intersect, obviously, but also what we see when they occur independent of each other.
Kristy: A quick disclaimer just, and I think this exists, you know, whenever you’re working with secondary data, is that when we started to assess racial or ethnic disparities and outcomes, we had to just because the sample size, again, if, if you’re looking at a low income group of people on the autism spectrum and then you further have to divvy up that data, you know, across several racial and ethnic categories.
Eventually what happened is the counts become too small to actually conduct analyses. So what we did for this report is we really had to create just two racial groups, which I don’t necessarily like to do cause I think it undermines the true diversity that exists with race and ethnicity.
But we had white, non-Hispanic adolescents or youth with autism. And then we had what was called BIPOC youth, which really included Hispanic youth and then anyone who’s quote non-white, which was supposed to represent this marginalized group. So I would like to state that any of the findings that we talk about in this report, Within that BIPOC group, I’m sure there’s a lot of deviation, and, and differences that exist.
But yes, you’re absolutely right. So what we found was that when we looked at health and healthcare access across these income categories, We found that racial and ethnic disparities remained, meaning that that white, non-Hispanic youth consistently had better outcomes than the BIPOC youth, even at the highest income group and, and at the lowest income group.
And I think really what it speaks to is this idea that race and ethnicity are not substitutes for income and income is not a substitute for race and ethnic disparities. And they really need to be looked at separately when we think about the marginalized population, uh, you know, across these identities of race and ethnicity, it really comes down to structural stigma.
It can come down to biases in terms of access to resources. There’s a myriad of other factors that really aren’t captured in data, outside of income that can be driving these disparities that we’re seeing. Unfortunately, with this data, we weren’t really able to measure things like stigma. Or, or disparities in access in that sense.
And I don’t know if, Anne, if you had anything to add.
Kristy: Yes. And discrimination is, yeah. And that, that itself is a very complex topic, that it needs to be further examined, but many data sets just don’t have measures for disparities in, in that sense.
Anne: A lot of times we write these reports and they lead to so many questions that we can’t answer with the national data that we have.
But it does help us to identify need for next level research. So something like this might lead into a study that would talk to families about what exactly were the greatest barriers that they experienced or you know, what did help them along the way. And every step, you know, along this research path helps us to understand better what the solutions are, hopefully.
Brynne: Absolutely. And that’s kinda the next thing I wanna ask you about. At the conclusion of this report. It was looking at how, all right, now we know the health inequities exist, right? And we know that we need to work to establish some type of economic stability for these kids and and also for adults, we need programs and policies that aren’t necessarily tied directly to healthcare in order to address some of these health inequities.
I’m wondering if you guys had, after completing this report, if you guys had any specific programs, any specific policies that even if we don’t know the exact solution yet, that might merit further research or a further look to see if we could try to use those programs to help address these problems.
Kristy: What this report shows, you know, is again, it’s kind of common sense, right?
Like having lower socioeconomic status or lower economic resources can lead to poorer health. And we know that just from a common sense perspective, but now we have empirical evidence to support that claim. So if we understand this relationship between income and health in terms of how to address it and reduce disparities and promote equity, would be this idea that if we can somehow intervene and improve the economic circumstances of this population, that in turn will lead to better health equity.
And so really I Drexel and, and the work that we’ve been doing the last several years and here at Florida State, it’s, it’s really trying to build this research program around any economic safety net programs that might help to facilitate later healthcare outcomes. So for instance, uh, we published some work on SSI, which is Supplemental Security Income, which is a cash assistance program that provides monthly cash benefits for people with disabilities.
And the idea is that this cash-based safety net is going to help families and, and youth and adults who might not otherwise be able to afford food or afford medication have that money to do so. Other really important programs are food stamps. We know that the National School Breakfast Lunch Program, um, in public schools is very important, especially in light of Covid.
We know that food insecurity is becoming really a, a large scale public health problem across the board, but it’s also impacting children, youth with autism who we know about 80% of adolescents with autism are using the National School Breakfast Lunch Program if they’re enrolled in public schools.
Really, it’s kind of touching on the, what I would like to call the cash assistance piece and the the food and nutrition assistance piece. Housing is very important, especially as we’re thinking about affordable housing, and really we do know from other research outside of autism that access to these benefits has a positive impact on both economic outcomes, but also on health and healthcare access.
So if you are eligible for instance for food stamps in one, in specific, some states, right, just like Medicaid. All of these safety net programs vary across states in terms of eligibility and in terms of benefit amounts. But in some states, if you are enrolled in food stamps, for instance, you might automatically be eligible to be enrolled in Medicaid.
So not only are these benefits helping promote your economic security from a financial perspective, it can be a pathway to getting better access to healthcare. So for me, I think it’s just very important to, to look at these multi-sectorial policies and, and try to understand how can we best organize and restructure them so everyone’s getting access to what they.
Brynne: I’m actually curious too, because I’m really intrigued by this concept that people who are middle income are actually having a harder time getting access to things than if they were lower income. And that makes a lot of sense when we look at a lot of these programs that have income limits. And asset tests, even independent of SSI, even if your child doesn’t qualify for SSI.
Based on your income, you can’t get food stamps. If you make like a hundred dollars a year too much, you’re not gonna get food stamps. And that that can definitely affect your whole entire family’s health and even access to Medicaid, like you said. So I’m wondering if that’s a part of it. If raising the, I mean, the asset tests are definitely a part of it, but I, I feel like we have ABLE accounts to kind of address the asset test portion now, but maybe with the income limits in particular, if upping those at a larger scale would help? I don’t know.
Kristy: Yeah. You know, and some research has, has even looked at the ACA or Affordable Care Act expansion on healthcare and how that has impacted access to other safety net benefits. And I, I think that’s very true when, when we’re looking at, you know, the working poor or individuals who are right at that cusp of being eligible for benefits but not quite eligible.
In many instances, that group of households tend to have the poorest outcomes. I think that’s a very important part of it. I, I also think. Like, uh, categorical eligibility is very important. So in, in some instance, families of children with autism may not know what benefits are, are out there, or, or what exists outside of special education and, and Medicaid.
And I don’t know, Anne, if you want an add for that, but I, I think kind of having a way to communicate how these different types of policies and programs intersect and how to even begin to apply and access those benefits is important because I do think it’s understated, not even at a research level, but at a practice level to really be competent in voc rehab, in special education, and in Medicaid and healthcare. You know, there’s so many different factors to consider that you really have to make sure that it’s not only the family but the providers are aware of what’s available in their communities and we just don’t know to what extent that’s happening or not happening, or if it’s a problem cause it really hasn’t been investigated at a more local level.
Joyce: I’m gonna agree with that because I think that when you are a working family and your child gets diagnosed with autism, and the pediatrician might not even know what to do next. Yeah. I mean, they might, they might not even know that there’s services that the insursurance might cover services, that there’s a way the school can do that there’s, you know, mm-hmm.
So I do agree sometimes it’s educating, teaching, I mean, making it known everywhere, even in schools that if your son or child has autism, here’s what you can do. Here’s the service. Because I mean, when I was working I didn’t, I didn’t know that I could apply for medical assistance to get him respite services.
I didn’t know that, that was told, that was told to me. I think it was Brynne that told me that, but I was struggling. You know what I mean? So I think that if there’s so much, education is key. And I think that if we start educating and, and if we start talking about it, because I, I know for a fact there’s families here that are still struggling, that are working families that don’t know what to do in a situation like that.
Kristy: I think, uh, pediatricians or family physicians and providers, that’s a great way to start. If there’s some way to screen for economic need, you know, at that level while you’re, you know, dealing with a new diagnosis or whatever it is, you might be navigating as a family, having that segue to economic resources could be very, very useful and meaningful.
Anne: In terms of policy too, we have models of health navigation that we know work. So we have ways to connect families to whatever they need, whether it is basic support, assistance, uh, for, you know, housing or rent food, or whether it is finding providers. And so using some of the models that we’ve learned from, um, the ACA law or thinking about what would it take to be able to have some type of a coordinator person who works in the, what, what we call the medical home, the um, place that the child regularly goes for healthcare that would be funded because we know that pediatricians and healthcare providers in general often don’t have enough time to provide the kinds of conversations and the level of information that’s needed to walk families through.
Not only what number to call, but what to say, what to ask for. It’s, it’s a lot of information, but funding someone else who has the time to be able to connect people to services. Wouldn’t it be awesome if insurance funded things like that as a matter of policy? That would be just the, I think, you know, the hugest benefit that you could give people.
Kristy: Yes, absolutely. One of the hugest.
Joyce: I will say that after that was like 11 years ago, the pediatrician that I go to have changed completely the way they look at autism, the way they proceed. I’m not saying I’m not knocking him , but I’m just saying that I was lucky that he changed and, you know, got to know it.
And, and the one thing that I do appreciate about him is that if he doesn’t know, he doesn’t know, um, he’ll let me know, he’ll find the research. But also as a Hispanic, I, myself, I am Puerto Rican, but I know there will be other barriers too, to cross. Do I? How much information do they need? Do they, which we already spoke to in the Latino and autism podcast before, but there’s a more barriers too, with customs on how we are, too. Do we allow that person in our house? How much information and things like that too. So I, I think listening and doing the podcast, I honestly think that we need to do more to educate. We need to, in my own community, we need to educate about it.
Anne: This is one of those topics that is so rich that there are so many things that come to mind. And I’m sitting here thinking about how families who are lower income, who are marginalized, often are living in places that are more vulnerable to climate change. And if you wanna think about navigation, I mean, thinking about people have things in place that work for them, usually if they have a loved one who’s on the autism spectrum, and if their life gets upended through flooding and fires and all kinds of crises, that ability to navigate and find additional resources, whether it’s health, um, and mental health like we’re talking about today, or whether it’s basic assistance is just critical. But we don’t have great infrastructures that are set up to help families who have children special healthcare needs manage, um, climate driven emergencies, like we’re starting to see more and more often. So that’s, that’s a whole another topic.
Kristy: I, yes, I do have to say, I know there’s been work, um, here I’m new to Florida, but you know, there’s an autism institute here at, Florida State, the disaster preparedness for hurricanes and, and people on the spectrum.
It’s. It seems, you know, it’s just, it’s amazing. I haven’t thought of it earlier, cause you’re absolutely right. It’s just, it’s gonna be, if anything, just becoming a larger problem as, as the years continue to pass. Yeah. It’s, it’s a fascinating area. Yes.
Anne: I wanted to mention one more policy idea, so there is some research that is newer research out from the people at Child Trends, um, that track, um, child and maternal health.
And they have found, um, a historic decline in child poverty that they believe is possibly partially related to some of the child tax credit or the emergency or extra income that people were receiving during the pandemic. So programs like that that are designed to help the general population are also hugely, hugely, if not more important for autistic families and families who have other children with disabilities.
And because I think those types of programs especially are beneficial for families who live on the cusp like we were talking about, who having that extra income monthly can really make a huge difference in their ability to meet their basic needs, ability to save, and then ability to meet all of these extra needs that we’re talking about today.
The kind of research that Kristy does, uh, looking at financial hardship and safety net benefits for families is really unusual in the field of autism. And so it’s just really exciting to be able to have some numbers to point to that really validate people’s stories and the challenges that they’re facing, and then hopefully drives these policy conversations about what would help to improve people’s lives overall.
Kristy: And, and ideally to engage policies or practitioners who may not view themselves as disability service providers recognize that the programs that they’re developing and implementing have a very large impact on individuals with disabilities like autism. And it kind of, again, it’s this idea of, of having these very siloed policies and these very siloed programs and really trying to engage more of an interdisciplinary conversation. Um, is, is really the, the dream, you know, and everyone’s busy and it’s, you know, it’s hard to, to engage everyone, but that’s kind of where it needs to be moving forward.
Brynne: A hundred percent. I love this idea of systems navigators. Just having somebody there to help you navigate all of those systems.
I feel like some states have that?
Joyce: And actually the, the insurance company steps in too and helps. So, yeah, that they helped me for the last two, actually, the pediatrician calls this person, this person calls me, and then we set the appointments looking for services, um, where he can get medically diagnosed.
So yeah, that our insurance will cover it, like we’ll step into when the pediatrician office calls.
Anne: And two other things that come to mind. One is that most states have a family to family health information center, and you can look that up. Most states will have a family navigation system in place, a program.
That has trained parents, family members of people who have special healthcare needs, especially developmental disabilities, to be able to mentor other families. And so that’s a possibility. There are increasingly programs that employ autistic people as peer mentors. And then the other thought is 211 call centers.
If people aren’t familiar with that, they’re invaluable. They exist across most of the nation again, and you call 211 and they are set up to provide information and referrals. On not only basic housing, rent, financial assistance kinds of things, but also referrals for things like health or, I don’t know where to go to get my child screened for autism, or whatever the question is.
I’m looking for childcare that will take a child with special healthcare needs. Those are the kinds of things that 211 can help people to try to find, and some states, even our localities even have programs set up that go beyond typical 211 referrals and might have special programs. One I was involved with in LA was targeting screening families over the phone who were Spanish speaking and maybe had less access to places to go to get their child screened.
So they were doing that for them over the phone and then connecting them with care coordination. It was. It was fabulous. So there aren’t enough programs like that, but every single one, you know, should be lauded for what they’re providing.
Kristy: And I’d say here, I know, um, the Autism Navigator, which, which really helps to connect families to diagnostic services moving forward, what we’re really hoping to do, or maybe one day hoping to do, would be to just have some kind of online platform where families can, you know, but kind of punch in what their current economic circumstances are and have a list provided to them of what they may or may not be eligible for.
And also giving families a list of documentation they might need to become eligible for, whether it’s SSI or food stamps or whatever type of, um, economic programs they might. Because unfortunately it requires a lot of documentation and we do know that families of children with autism are, are inundated with the need to have a paper trail, right?
For everything. And I think that’s something that really is, is undercommunicated as well, because there’s a whole nother set of assets and income requirements that you need to make sure you can fulfill before getting benefits. Kind of integrating that into these platforms be very useful.
Anne: I was just thinking that if, if you asked me one policy that I think would be just so far reaching, it would be to implement some type of assistance for family navigation within the school system.
Whether it’s helping families to connect to each other or whether it’s actually giving people the information they need when they’re transitioning into adulthood to try to access benefits. You know, over and over we hear families say that they weren’t told, they didn’t have access to the information that they need.
But if you think about what is the common point among most of these families, it’s that they’re all receiving special education for the most part. And, um, it’s just, that would be such a valuable tool to be able to provide information to families.
Kristy: Absolutely, and I think, you know, IEP plan and transition planning in general in schools when, when students in some, in some circumstances, some of these policies like supplemental security income, it’s an age graded policy.
So when the young adult turns 18, the eligibility for benefits changes because you have to become eligible as an adult and you, the application process changes as well. So having some kind of plan in place to also prepare for that bureaucratic transition is really important. In a recent paper that we’ve conducted at, at Drexel, we found that about over 75 or 70% of supplemental security income, new awardees, so people entering SSI for the first time, were actually ages 18 to 25.
So when, when thinking about the transition to adulthood and the services in addition to employment and healthcare transition, there’s this whole economic transition that needs to take place. And I agree with Anne. I think that’s the schools are really an important player in helping to prepare for that change.
Brynne: For sure. Specifically with autism, a lot of the waiver programs that our kids might need as they make that transition, there are wait lists, and if you wait till they’re 18, there’s gonna be quite potentially a significant gap between hitting adulthood and actually being able to access those services.
But if you know about it early on, you can get on the wait list early on and hopefully have a little bit of a smoother transition. But that’s something that we’re not, no one reaches out to us and educates us about that. You know, you kind of have to seek that information out on your own.
Anne: You know, adding these requirements that that coordination be done and that assistance be given to, to families to help them navigate are things that need additional funding in order for it to happen.
Anne: Even if it’s already written into law, which in special education, you know, to some extent it is with transition, um, that that type of information should be being provided to families, but we’ve never really hit on the recipe for how to exactly make that work.
Kristy: Very good point, Anne.
Joyce: And this is not something that’s gonna go away.
The numbers are growing. I, it’s, we have to do something, it’s not gonna go away.
Anne: Yeah. And the wait lists are growing.
Kristy: And I think, you know what, we haven’t had too much time to talk about this, and this really wasn’t the purpose of the report, but moving forward, thinking about the impact of covid and it’s gonna have on, on a, on the service providers side, right?
So we know that school systems and, and hospitals and doc, I mean, everyone’s overburdened. There’s high turnover. But when you think about the disproportionate impact that Covid has on our population, it’s really BIPOC and low income households that are really feeling a lot of the, the negative effects of the pandemic.
And so moving forward, really thinking about the need is just gonna grow, but also the systems in place to support that might be under-resourced even more so to address that. And I think it’s just a very, um, important point to touch on when we think about how to address this moving forward.
Joyce: Yeah. And then add inflation too.
Brynne: Yeah, everything’s a mess, but I kinda love this as a way to create new jobs. Let’s get some people employed.
Kristy: I was gonna say, we’re sounding really negative. Thank you for that.
Joyce: I say positive on the podcast! Stay positive. Yeah. Oh, and here I am. Inflation. I just killed it.
Brynne: It’s so real though. It’s so real. I mean, we’re talking about food insecurity. I mean, our food prices around here have doubled. I mean, it’s, it’s a real thing. It’s a real concern, but.
Kristy: With school closures. Yeah, it’s, it’s, um, and I think it is a growing cons. I mean, I think funding has really responded to food insecurity as an important point.
And so now my hope is that the autism world and scholarship and autism can kind of ride that wave to really begin to investigate this further in the autistic population. So I think there’s definitely mechanisms in place, you know, to help increase our understanding, but it’ll take some time, I think , you know, to really fully understand the impacts.
Brynne: And the fact that these conversations are even happening is an improvement from where we would’ve been like 20 years ago. So it’s sometimes it’s hard to look reality in the face when reality is sad, but, uh, that’s the only way you get to forward and address it. So ultimately, I think it’s gonna be a positive thing at the end of the day.
Joyce: Oh, I, I think it’s changing. I think it’s, it’s moving in the right direction. Having a 20 something year old adult child with autism and having a six year old with autism, I will tell you that it is getting better. I, I will tell you it’s more acceptable. People do understand and people do help.
I’m gonna say experiencing that, yes, it’s getting better. It’s not there a hundred percent, but it’s getting.
Brynne: Well, thank you both for joining us today. We appreciate it so much. Your guys’ research is always so interesting and we hope you know that anytime you have anything you wanna talk about, uh, we would, we would love to discuss it with you.
You’re welcome on our show anytime.
Brynne: Thank you so much to Anne and Kristy, and thank you to all of you for tuning in every week. If you enjoy this podcast, please leave a five star review on whichever platform you’re using to listen. Also, be sure to hit that subscribe button to get updates when the next episode goes live.
Next week we’ll be talking to Mary Rubenis of Vestwell, one of the largest program managers for ABLE accounts in the country. Be sure to tune in to learn about able account eligibility, qualified disability expenses and more. See you next week. Bye!