Molly Costanzo on Improving Economic Well-being for Households with Children with Disabilities

Nateya Taylor [00:00:04] Hello and thanks for joining us for the Poverty Research and Policy podcast from the Institute for Research on Poverty at the University of Wisconsin-Madison. I’m Nateya Taylor. For this episode, we are going to be talking with Molly Costanzo about economic well-being for households with children with disabilities. Molly Costanzo is a scientist at the Institute for Research on Poverty. She has a Ph.D. in social welfare from the University of Wisconsin-Madison. Her research focuses broadly on policies that support children and families. Molly, thanks for joining us today.

Molly Costanzo [00:00:41] Thanks for having me.

Nateya Taylor [00:00:43] So this research is about the economic well-being for households with children with disabilities. Can you elaborate on the indicators you use to define disability?

Molly Costanzo [00:00:54] Yes, this is a great question, and I think it’s one that’s important for everyone to always ask themselves when you see a study about disability, because disability is a social construct and we measure it differently in different places, right? So it’s defined differently across different spaces, different cultures, you know, and even over time in the US, we’ve sort of switched from this idea of a medical model of disability to a social model of disability and for policy, which is often where I do my work. Different policies that impact people with disabilities even use different definitions, right? So how you qualify, for example, for special education receipt through the Department of Education requires a different sort of disability definition than, for example, folks who might get disability benefits. And I think it’s also important to note that often the definition of disability can cover a really large range of conditions and diagnoses and that those can really impact kids and families lives really differently. Right? So a broad definition of disability that can really sort of include, for example, kids that have ADHD and it might also include kids with cerebral palsy who might have mobility aids, right? So there’s sort of these different ways in which disability, depending on what we mean by it, can impact our interaction with the world. So in this study, which was what your question was. For better or for worse, we use the available measures that are in the survey data set that we use, which is the SIPP, the Survey of Income and Program Participation. So there’s sort of 12 different disability indicators. And if a child in the household met any of these sort of disability indicator measures, we count them as having a disability. So the general disability indicators in the SIPP include whether or not the child was deaf or had severe hearing difficulty, whether the child was blind or had problems seeing even with contacts, and glasses, whether the child had difficulty concentrating, remembering or making decisions, serious difficulty in walking or climbing stairs, trouble dressing or bathing, difficulty doing errands alone, which is less of a child indicator, maybe more of an adult indicator, whether the child had a condition that limited their ability to play with children, their own age limitations and schoolwork, a developmental condition that limits ordinary activity. And then some work indicators. This would be for older kids, right? So those sort of closer to 17 or 18, any difficulty finding or retaining employment, health condition limits, kind or amount of work and a health factor that prevents working. So again, you can see there that that really covers a broad range of conditions and diagnoses that might impact families really differently.

Nateya Taylor [00:04:09] And just so we have more context in numbers. How many households in the U.S. include a child with a disability?

Molly Costanzo [00:04:17] This is a great question. And as you heard in my long last answer, because measuring of disability is can be complicated. It can be hard to sort of say precisely because it depends, again, on what we mean by disability. For example, there’s a recent census brief that estimated that just over 4% of children had a disability in 2019. Another survey, which asks about chronic health conditions found that it’s much higher estimated. So that survey found about 20% of kids in the US have a disability. From a policy standpoint, we know that about 7.5 million students receive special education services in the 2020 to 2023 school year, which is about 15% of all students. So that’s a really broad range of estimates. But I think the takeaway is that it’s not a small number of families, right? So even at the low end, it’s 5% of families, but it’s up to 20% of kids. Right, for whom these considerations are really relevant. And we also know that this number has been increasing across decades. That has to do partly with increases in diagnoses and some other factors. But all in all, I think we can say that it’s somewhere between 5% and 20% of of kids in the U.S..

Nateya Taylor [00:05:44] What are some examples of barriers to equity and economic hardship households with children with disabilities face?

Molly Costanzo [00:05:53] So I think generally just we live in a world that is not designed for people with disabilities, right? So that grownups with disabilities and kids with disabilities. So that sort of results in a lot of different barriers to equity, which can sort of exacerbate economic hardship. So it just as one example, I’ve done some work looking at childcare for kids with disabilities and after school care for kids with disabilities. And you can think about how that sort of can be more complicated depending on what your child’s needs are. And it may or may not be the right fit for your family. And that then right can impact how and when parents can work. And other work I’ve done, we’ve talked to parents sort of about retirement decisions and sort of their labor market trajectories. So parents of children with disabilities and we’ve heard that caregiving needs and medical appointments, right? So anyone with a kid sometimes is juggling like your kid might be sick or you might have to go to the doctor or. Right. And there’s a lot of juggling that goes along with that. And for parents whose kid has a special health care need or disability, right. That’s really increased here from parents. So that impacts how they work, when they work, how much they work, and even sort of this tradeoff between maybe taking a more flexible job that might pay less. Right. And so just to have that flexibility so you can think about how that might impact economic well-being across the family’s life span. There’s also added costs to having a disability, right? So we do have health insurance that covers some things, but maybe not all things that the child needs. So there might be some added out-of-pocket costs given that society and different places are not designed for people with disabilities. There may be added costs to modifications that you need to make in your own life because we have not made them publicly as as a society.

Nateya Taylor [00:08:00] And how does economic hardship impact racial differences in the rates of children with disabilities?

Molly Costanzo [00:08:06] This is a good question and it has sort of a lot of different strands that feed into it, I would say. We know that there are racial differences in likelihood of having a diagnosed disability that might reflect differences in access to health care services or other services, particularly when a child is younger. So for a long time when we’re using broad measures of disability, we would see larger proportions of white children having a diagnosed disability. That probably reflected a difference in who sort of had access to those health care resources to have a diagnosed disability. So that’s one factor. Another factor is that there’s a long standing association with having limited economic resources and disability, and there’s a lot of different reasons for that that we can think about. Again, health care, like when you’re younger or prenatal care or exposure to different environmental toxins, right? We know that that is different by a child’s race and economic status. And so from that standpoint, children of color and particularly Black children. Right. Might be more at risk of having a disability. And then there’s some differential rates of having the resources to have that diagnosed.

Nateya Taylor [00:09:47] So in this study, you all investigated economic well-being of households with children with disabilities. What measures of economic well-being did you all use?

Molly Costanzo [00:09:58] But our primary measures were sort of measures of hardship. So we looked at food hardship, we looked at a utility hardship. So meaning whether or not a household said that they had missed a utility payment and rent or mortgage hardship. So whether or not they said that they had missed a rent or mortgage payments in the last year, we also looked at income levels defined by the poverty threshold. So the proportion of poverty that a household income was at. Those were our primary measures that we used because that sort of gives you a sense of both income level and then income poverty as well as material hardship, poverty, because we can think about how economic well-being is a multifaceted measure, essentially. Right? These were sort of less central. But we also looked at descriptively whether or not families receive different public benefits and sort of how those might have differed between families who had a typically developing child and families with a child with disability.

Nateya Taylor [00:11:10] Earlier you mentioned that you are using SIPP as your data to investigate economic well-being. Can you talk more about why you all chose to choose that dataset and the methods you used to measure the economic well-being of children with disabilities?

Molly Costanzo [00:11:31] First, there was not a lot of available data that both measure whether or not a child has a disability and also provide sort of well-rounded measures of economic well-being. So the SIPP is really one of our few data sources that we can use to understand this. There had been past work using older versions of the SIPP that sort of did something similar, right? And so part of what we were hoping to do was to update our understanding, right? So I think the previous study used a 2008 SIPP, which is now a little bit dated, both in our understanding of child disability as well as can think about a lot has happened since 2008 in sort of the broad economic life of the country. Right. And impacts on households. So that was sort of our starting point. And we were sort of hoping to update our understanding generally of economic well-being of children with disabilities. Our methods are relatively, I would say, not fancy. So I am not an economist and economists might not like my method. Our methods are descriptive, right? So we’re just trying to get sort of a lay of the land here so we’re not doing anything fancy. We just do some basic comparisons between households with a typically developing child and households with a child with a disability. So we look at some mean differences. We also do some basic regressions. So to control for other factors that we think might impact both economic well-being and disability. And then we do a little bit of matching work to kind of try and create a sample of households with typically developing children that’s more similar on other characteristics to the population of households of children with disabilities. And then we look at these economic well-being indicators.

Nateya Taylor [00:13:36] And what were your findings?

Molly Costanzo [00:13:39] So we find, as with the previous work, that households with a child with disability are more likely to experience economic hardship than other households, both sort of in the income poverty measures and in the material hardship measures. So across all of our models, both the matching model and the basic regression model. We find that households with children with disabilities have lower income to poverty ratios, so generally lower household income. In some of our models. All of our models point to a pattern of having increased food hardship. In some, this is significant and in some it is not. And similarly, all models point to an association with having an increased utility hardship. So those are sort of our main findings with our main outcome measures. The pattern of income sources is also suggestive of sort of lower overall economic well-being. Right? So we find probably unsurprisingly, that households with children with disabilities are more likely to have Medicaid and SSI as an income source. That probably has to do with who’s eligible. Although I will point out that SSI is a means tested program in which you need to have like very limited income and almost no assets, right. To to be eligible. And we also see that households with children with disabilities are more likely to have SNAP benefits coming into the household rate. So that sort of also reinforces our findings related to food hardship and overall economic well-being.

Nateya Taylor [00:15:25] Based on the findings, what are some implications for practice to increase economic well-being of households with children with disabilities?

Molly Costanzo [00:15:36] I think this is a great question and this is why we do this work, right? Like thinking about the implications are is is the reason to do this. From a policy standpoint, I think one thing for programs to potentially consider are how households with children with disabilities might have different needs compared to other households with children. So that might mean considering different eligibility criteria. So if families have lower overall economic well-being, maybe that means having a higher income level for eligibility for some programs. For example, SNAP, we can imagine how the nutrition needs for these families might differ from other families, right? So some kids might use g tube or a feeding tube. And so understanding sort of how those nutrition needs might differ and how SNAP does or does not meet those needs currently, I think sort of broadly thinking about this population of families as a population that clearly needs some additional resources, has important policy perspectives and thinking about how to design policies with this in mind is important. For practitioners, I think there’s a lot here too. So I think this means, right, if you’re a social worker or you are at a school, right, like understanding the ways in which these families might have a needs to be connected to different programs and resources and maybe are not. One thing I think a lot about in this work, but also in sort of my broad work here, is the role of like an IEP meeting at a school. So an IEP meeting is kids who are receiving special education services, so they have a disability, are required to have an IEP meeting with parents and school staff every year. And that might be an important like touch point for families, right? To check in to see what resources they might have, what resources they might need, or maybe families aren’t going to be forthcoming about that. But being able to provide referrals or resources and have that available for families is important.

Nateya Taylor [00:17:58] And lastly, what are some implications for research?

Molly Costanzo [00:18:02] Don’t mean to continue to sort of. Be on this same strand here. Right? But we don’t have great measures of disability. And so I think it’s really important that we think about how to better represent people with disabilities in large scale studies and surveys. So not all survey even ask about someone’s health status. And so simply adding questions about that could be important. Thinking about how to design a study that may over represent people with disabilities, for example, could also be helpful because then we would be able to desegregate by type of disability or health condition. Right? So understanding these findings here apply broadly to children with some broad type of disability and understanding the ways in which it might matter whether your diagnosis is something related to mental health compared to mobility, for example, could also really unpack some important nuances. So I think that is a big one, right? So thinking about how we can better measure and represent people with disabilities and studies, this study is associational, so there’s a lot of work to do on unpacking the impact of benefits on economic well-being. We don’t always know how programs and policies are working or not working. We find that families are not faring as well economically. Well, is there something in the safety net that’s working? What is it? Are there things that aren’t working? What are those? Right. So I think there’s sort of a lot of next steps there. And then finally, I’ll say that these data are all pre-pandemic. And obviously the pandemic influenced a lot of things about family lives and people’s economic well-being. So I think it would be important to continue this and look in the future sort of post-pandemic how families are faring. And I will also say, as we transition to a new administration and it’s sort of important to understand the ways in which policy changes or proposed policy changes might continue to impact these families.

Nateya Taylor [00:20:22] Molly, thank you so much for conducting this research and sharing your insight on this topic. I think it’s really important that we have more research on, you know, the economic well-being of households with children with disabilities. So thank you.

Molly Costanzo [00:20:37] Thank you so much for having me. I’m really glad to be able to share my work.

Nateya Taylor [00:20:42] Thanks so much to Molly Costanzo for talking with us about the economic well-being for households with children with disabilities. You can find a link to the article referenced in today’s episode in the show notes. The production of this podcast was supported in part by funding from the U.S. Department of Health and Human Services Office of the Assistant Secretary for Planning and Evaluation. But its contents don’t necessarily represent the opinions or policies of that office or any other agency of the federal government or the University of Wisconsin-Madison. Music for the Epistle is by 808xri. Thanks for listening.