Abstract
Keywords
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Recent educational policy scholarship theorizes parents as policy agents within SE because of the administrative responsibilities they are assigned within federal SE law (Cowhy et al., 2024b), currently governed by the Individuals with Disabilities in Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 (Section 504), which prohibits any federally funded entity from discriminating against people with disabilities. In a recent article, colleagues and I argue that parents are tasked with interpreting aspects of the IDEA, helping to develop SE plans, and enforcing the IDEA for their child when they believe the school has not met their child’s federal rights (Cowhy et al., 2024b). In this way, parents must perform administrative roles for their children to receive services (Turnbull et al., 2020; Yell, 2019). This administrative work comes with costs, conceptualized in this paper as a form of administrative burdens (Burden et al., 2012; Herd & Moynihan, 2018), which can deter families from seeking services or enforcing their children’s rights (Berrey et al., 2017; Galanter, 1974; D. Moynihan et al., 2015).
Moreover, these costs may not be borne equally. Specifically, Parents of Color and parents from communities with less access to power may experience disproportionate costs or burdens (Ray et al., 2023). To date, a substantial body of research has investigated how to empower parents as advocates within SE (e.g., Goldman et al., 2020; Rossetti et al., 2021), including racially, geographically, and linguistically marginalized parents (Buren et al., 2020, 2022; M. M. Burke et al., 2021). However, more work is needed to understand the burdens that all parents might experience, and whether Parents of Color experience disproportionate costs within their labor. Unpacking the burdens families experience and if these burdens differ for Parents of Color may also help shed light on long-standing inequities documented in SE policy implementation. For example, patterns in disproportionate diagnosis show how disabilities and racial identities are co-constructed (Annamma et al., 2016). Children of Color make up a disproportionate share of all students who receive SE services and supports, and they are more likely to receive disability labels that locate a “problem” with their “behavior” (e.g., “emotional disturbance) or their “intelligence” (i.e., “intellectual disability”; Ferri & Connor, 2005; Fish, 2019; Harry & Klinger, 2014; Skiba et al., 2008). In contrast, White children are more likely to receive “higher status” disabilities–ones that are less stigmatized and better resourced in schools (Fish, 2022; National Center for Education Statistics, 2022), including an autism spectrum disorder (ASD) diagnosis.
Beyond studies that investigate whether and under which conditions Students of Color are disproportionately represented (Artiles, 2019; Elder et al., 2021; Hibel et al., 2010; Skiba et al., 2008), extant literature on the inequities within SE has tended to focus on either the larger political and social environment—one that is deeply ableist and racist (Annamma et al., 2016; Skiba et al., 2008)—or micro-level processes where educator’s deficit-based beliefs and biases affect their interactions with and expectations of children (Bray & Russell, 2016; Fish, 2019). Few studies have focused on how these inequities in policy implementation are reproduced by organizations like schools and districts (Ray et al., 2023; Woulfin & Jones, 2024). Consequently, we have limited understanding of how organizational practices, including the routine ways that parents are required to engage within implementation and the burdens or costs they experience, may contribute to these inequities. Empirical research is needed to identify how parents experience and navigate these burdens—and how parents from different racial backgrounds—may experience disparate costs. This study takes up this problem by asking:
How, if at all, do parents report experiencing burdens in SE policy implementation?
In what ways, if any, do parents racialized as White and Parents of Color report varied types or levels of burden?
Theoretical Framework
To answer these research questions, I draw on and integrate the theory of administrative burdens from the field of public administration and the concept of organizational fields from organizational sociology. This framework is illustrated in Figure 1 below.
Conceptual framework: Administrative burdens within the field(s) of special education.
Administrative Burdens
To help understand the day-to-day costs that parents incur as they attempt to understand and enforce their children’s rights, I turn to the theory of administrative burdens from public administration (Barnes, 2021; Barnes & Henly, 2018; Burden et al., 2012; Heinrich, 2016; Heinrich et al., 2022; Herd & Moynihan, 2018; D. Moynihan et al., 2015) and, more recently, healthcare (Herd & Moynihan, 2020, 2021). Broadly defined, administrative burdens are the red tape (D. P. Moynihan et al., 2016), onerous tasks and costs that individuals experience as part of policy implementation (Burden et al., 2012; Heinrich, 2016; Heinrich et al., 2022; Herd & Moynihan, 2018) and/or seeking a government service (Barnes, 2021; Herd & Moynihan, 2018). These burdens occur when “the state regulates private behavior or structures how individuals seek public services” (D. Moynihan et al., 2015, p. 43). More recently, administrative burdens have been theorized as specific costs that have traditionally included learning, compliance, and psychological costs (Herd & Moynihan, 2018; D. Moynihan et al., 2015) and recently extended to also include racialized burdens (Baker & McCloud, 2023; Gándara et al., 2023; Ray et al., 2023).
Learning Costs
Learning costs for those seeking public services or benefits are the costs associated with searching for information about public benefits and how to receive them (Herd & Moynihan, 2018; D. Moynihan et al., 2015). Administrative burdens research has found that to vote, citizens often incur learning costs about the kinds of documentation they need and where their polling place is located; within healthcare, patients often have to search for information on which doctors will accept their insurance (Herd & Moynihan, 2021); and within federal food assistance, private individuals often have to learn which grocery stores will accept their public benefit (Barnes, 2021). Within SE, parents may have to search for information on their child’s disability and their child’s rights to education (including services and supports their child is entitled to), parents’ own rights and responsibilities, and how parents are required to participate in SE implementation (Cowhy et al., 2024b). To this point, Buren et al. (2022) found that knowing what supports and services their child needed and what parents could ask for was a barrier in rural parents’ advocacy efforts. In addition, information on the quality of SE services can be difficult for parents of students with disabilities to find and compare (Cowhy et al., 2024a; Waitoller, 2020).
Compliance Costs
Compliance costs include the paperwork, phone calls and other forms of communication, time, and financial resources that private individuals spend to access a public benefit (Herd & Moynihan, 2018; D. Moynihan et al., 2015, 2022). Compliance costs include documentation of workforce participation to access social welfare benefits (Herd & Moynihan, 2018), filing taxes and filling out applications for student loans in higher education (Baker & McCloud, 2023), and filling out (sometimes multiple) applications to access Medicaid, food assistance, or Earned Income Tax Credits benefits (D. Moynihan et al., 2015). Similarly, within healthcare, compliance costs also include some financial costs related to the compliance work required for health insurance companies to cover care, like preauthorization and other insurance forms (Herd & Moynihan, 2021). In SE, compliance costs would also include the documentation work that parents do, putting all requests of SE teams in writing (including email), signing off on their child’s evaluation, and attending their child’s individualized education program (IEP) meetings (Underwood & Mead, 1995; Yell, 2019).
Psychological Costs
Finally, psychological costs include feelings of frustration, fear, sadness, and anger that individuals experience when they try to utilize a public benefit; a loss of autonomy through individuals’ interactions with program administrators; and stresses that are associated with learning about and complying with programs or policies (Herd & Moynihan, 2018, 2020; D. Moynihan et al., 2015). For example, within voting rights, psychological costs include the uncertainty one feels about whether they will be permitted to vote and the frustration with being questioned and having one’s rights taken away (Herd & Moynihan, 2018). Separately, recent work on administrative burdens within immigration and asylum has found that as immigration policies have rapidly changed in ways that have substantially increased compliance costs—for example, longer wait times in sometimes dangerous and often precarious conditions before entering the United States, additional and more complicated paperwork, additional required check-ins within the United States, etc.—the psychological costs have increased in tandem (Heinrich, 2016; D. Moynihan et al., 2022). The psychological costs include fear (e.g., fear of family separation, fear of kidnapping in border communities while waiting, and fear of sexual violence; D. Moynihan et al., 2022), as well as increased stress from missing additional work and traveling to check-ins (Heinrich, 2018; D. Moynihan et al., 2022). Though different policies, together they illustrate that even when an individual has an entitlement to a service or a “right” to exercise, individuals can experience shame, stress, frustration, fear, and a host of other psychological costs in their interactions with the government.
A separate literature on families’ experiences in SE has long documented how painful parents’ work can be. Parents have long been the primary advocates for their children, including advocating for social and public institutions to see and treat their children as human at all (Blatt, 1969; Kittay, 2019; Turnbull & Turnbull, 1978). Further, though parents are dependent on public schools to recognize their child’s right to a free and appropriate public education, they experience myriad barriers to their work and participation, including feelings of intimidation from the technical jargon used in meetings and the ways meeting spaces are physically arranged (Bray & Russell, 2016; Buren et al., 2020; Weatherly & Lipsky, 1977). Families can also feel disempowered from speaking up, especially since educators sometimes blame parents for the disability, which can trigger feelings of shame, isolation, and disempowerment (Harry & Klinger, 2014; Harry & Ocasio-Stoutenberg, 2020).
Separately, research on the administrative burdens patients experienced in healthcare defined psychological costs as “the stress and frustration that comes from navigating [compliance and learning] burdens, especially when the outcomes, our health and the health of our loved ones, might be harmed if we fail to do it effectively” (Herd & Moynihan, 2021, p. 752). In the context of SE, parents can feel that their child’s wellbeing, future, health, and safety are at stake within decisions about what disability labels, services, supports, and learning environments to which their children will have access (Cheyney-Collante et al., 2024; Cowhy et al., 2024a; Fish et al., 2025). Thus, existing literature suggests that “psychological costs” can be a lens to understand part of parents’ experiences in SE and how negative experiences can affect individual parents’ ongoing work and may scale up to affect SE implementation more broadly.
Together, the costs that compose administrative burdens are neither insignificant nor accidental. In many cases, administrative burdens have been intentionally embedded within policies as a political compromise to decrease take-up (Herd & Moynihan, 2018; D. Moynihan et al., 2015). In addition to the formal administrative burdens written into official policy, those entrusted to implement social policy and public benefits within organizations (e.g., social workers in welfare offices, poll workers at election precincts, and educators in schools) can and often do use their discretion to create or remove barriers for clients, especially when there are scarce resources to meet demands for services or benefits (Barnes & Henly, 2018; Brodkin & Majmundar, 2010; Heinrich, 2016; Heinrich et al., 2022; Lipsky, 2010).
SE as a policy domain is ripe for analysis using an administrative burdens lens for two reasons. First, SE is persistently underfunded at the federal and district level (Lieberman, 2022, 2023a, 2023b), which may limit the supply of services available and increase the barriers or red tape that parents experience in an attempt to receive the public benefits to which their children are entitled (Moynihan et al., 2016). And second, prior work has demonstrated that navigating SE has a high learning and technical knowledge demand on parents in terms of advocacy, compliance, and identification of service opportunities and rights (Kalyanpur et al., 2000; Rossetti et al., 2020, 2021). This is made more salient by parents’ concerns that their child’s physical and emotional safety and educational and economic future are on the line (Cheyney-Collante et al., 2024; Cowhy et al., 2024a; Harry & Ocasio-Stoutenberg, 2020).
Racialized Burdens
More recently, scholars have advanced the study of administrative burdens by naming the differential and racialized distribution of such burdens in communities or by policy type (D. Moynihan et al., 2022; Ray et al., 2023). Recognizing that the organizations that are responsible for implementing social policies are racialized organizations (Ray, 2019), Ray et al., (2023) developed a framework to understand the additional and compounded costs or burdens that organizations and administrators create for People of Color to access public services or benefits. Racialized burdens “are a type of ‘administrative practice’ that normalizes and reinforces patterns of racial inequality in public services, simultaneously reproducing disparate treatment while obscuring discrimination because bureaucratic actors are ‘just following the rules’” (Ray, et al. 2023, p. 139). While administrative burdens have historically disproportionately targeted People of Color within the United States, racialized burdens have increased as more explicit forms of racial bias have been made illegal or otherwise unacceptable. As Ray et al. (2023) argue, though administrative burdens can be facially neutral, the racialized burdens within them “neatly carry out the ‘how’ in the production of racial inequality while concealing, or providing an alibi for, the ‘why’” (p. 141). Thus, understanding the racialized nature of administrative burdens helps explain if and how administrative burdens are more likely to be targeted towards and felt by People of Color (Baker & McCloud, 2023; Gándara et al., 2023; Ray et al., 2023).
Racialized burdens can occur within the program design or implementation phase. For example, within voting rights, literacy tests were designed and disproportionately used at the discretion of election officials for Black voters. Today, formal state-level voter ID laws and the location of polling places increase the time required of Black citizens to exercise the right to vote (compared to White citizens) and pose racialized burdens (Herd & Moynihan, 2018). Similarly, within immigration, Whiteness can no longer be used as an explicit credential, but policies like “Remain in Mexico” disproportionately targeted People of Color and largely excluded White immigrants (D. Moynihan et al., 2022). Similarly, the first Trump administration closed many foreign consuls along the Southern border and curtailed agents’ discretionary power to help grant asylum, which disproportionately increased compliance costs for non-White immigrants (Heinrich, 2018; D. Moynihan et al., 2022). Further, these racialized burdens have been justified through the racist language the administration used to describe individuals seeking refugee or immigration status along the southern border (Heinrich, 2018; D. Moynihan et al., 2022).
Turning to education, in a recent study of racialized burdens within higher education in Texas, Baker and McCloud (2023) found that historically black colleges and universities (HBCUs) and institutions that disproportionately serve Students of Color were less likely to communicate a new state policy. More specifically, they were less likely to have information on their websites about state changes in the number of attempted credit hours allowed before students would begin being charged financial penalties or even out-of-state tuition. This meant Students of Color were more likely to face steeper learning costs. These changes, if not well-understood by students, could result in huge financial penalties (i.e., the cost of out-of-state tuition and loss of federal student loans) and perpetuate racial inequities through the immediacy of disproportionate fines and later through college completion rates, wealth, and income (Baker & McCloud, 2023; Guzman-Alvarez & Page, 2021).
Though racialized burdens have not been used to investigate SE to date, it is possible that the long-standing racial inequities within SE (Harry & Klinger, 2014; Skiba et al., 2008) are evidence of racial burdens within the law’s design and implementation, especially given the role of discretion that educators and clinicians have within implementation. For example, the negative assumptions that educators and clinicians can make about Children and Parents of Color can result in delayed ASD diagnoses and an overidentification of “emotional disturbance” (Gourdine et al., 2011; Pearson & Meadan, 2018), especially for Black males (Fish, 2022). Further, beyond the discretion that educators and clinicians use within students’ initial and triennial evaluations, educators also use their discretion in determining appropriate learning environments and recommending the appropriate services and accommodations to meet students’ needs (Underwood & Mead, 1995; Weatherly & Lipsky, 1977; Yell, 2019). This discretion has been historically used to intentionally place (disabled) Students of Color into secluded classrooms to avoid racial desegregation (Ferri & Connor, 2005) and to continue to deny disabled Children of Color their “rightful presence” to rich learning environments (Calabrese Barton & Tan, 2020). Parents of Color must contend with this racist discretion in their SE-related administrative work.
In addition, parents may themselves experience racism within their interactions with their child’s school (Gillborn et al., 2016; Harry & Ocasio-Stoutenberg, 2020). In several interviews and ethnographic studies, Harry and colleagues (e.g., Harry & Klinger, 2014; Harry et al., 1995, 2005) have documented how Parents of Color are often acutely aware of the racial power dynamics in SE settings. Across studies, these authors show how Mothers of Color experience being treated with hostility, rudeness, and disrespect by their child’s educators. They illustrate how Mothers of Color “hold back their voice” in some contexts and strategically weigh when and how to use stereotypes steeped in misogynoir, like the “angry Black Woman”—deciding when they believe their anger or emotions could be used to deny versus to secure their child’s needed supports. Moreover, educators often use limited pieces of data about a family while ignoring a parent and family’s strengths (e.g., referring to a child as being from a “broken” or “dysfunctional” home instead of recognizing how grandparents and parents come together to support the child at IEP meetings) to view and justify their vindictive, discriminatory, and disrespectful actions (Harry & Klinger, 2014; Harry & Ocasio-Stoutenberg, 2020). Indeed, disrespect comes out as a major theme from a meta-analysis of the experiences of parents from “nondominant communities” within SE (Buren et al., 2020).
Given the evidence of racism within the implementation of SE and the tremendous responsibilities parents bear to initiate a request for an evaluation, help develop an IEP, and enforce their child’s rights (Cowhy et al., 2024b), it follows that the additional theory of racialized burdens within the larger administrative burdens literature highlights the specific costs that Families of Color—and parents and caregivers of Children of Color—incur through their work as policy agents within SE. Thus, racialized burdens can result in additional costs and compound the learning, compliance, and psychological costs that Parents of Color experience in SE and may help explain some of the long-observed inequities in SE implementation.
Organizational Fields
SE policy implementation needs to be understood in terms of the level of burden demanded of parents to access services at the intersection of these three, often distinct and non-cooperating, organizational fields. In their seminal piece, DiMaggio and Powell (1983) define organizational fields as “those organizations that, in the aggregate, constitute a recognized area of institutional life: key suppliers, resource and product consumers, regulatory agencies, and other organizations that produce similar services or products” (DiMaggio & Powell, 1983, p. 148). In short, organizational fields are a “recognized area of institutional life” (Wooten & Hoffman, 2017) and include interdependent organizations and actors that share a common meaning system (Scott, 2013; Scott & Meyer, 1991). Fields are comprised of organizations and actors with vertical and horizontal linkages (Scott, 2013). Further, the boundaries of organizational fields are not set in stone; they change, adapting to changing institutional environments (e.g., regulative pressures, guiding norms, and cultural-cognitive understandings) and changing institutional logics (Dunn & Jones, 2010; Scott, 2013; Scott et al., 2000).
Examples of traditionally understood distinct organizational fields include education and healthcare (e.g., Heimer, 1999; Kellogg, 2011; Meyer & Rowan, 1977; Scott et al., 2000). These fields sit within different institutional environments (Scott, 2013) and are composed of different organization populations that are governed by different agencies (both legal and professional), different actors, and different logics (Scott et al., 2000). For example, both physicians and teachers are licensed by their state and regulated by separate professional organizations (e.g., the American Academy of Pediatrics, the National Educators Association). As another example, healthcare is commonly provided in medical centers (e.g., hospitals, clinics), whereas education is commonly provided in schools. Hospitals and physicians interact with different federal policies and agencies compared with schools and educators (e.g., the Department of Health and Human Services, the Department of Education). Similarly, the field of law has been theorized as a separate organizational field, though one that permeates others (Heimer, 1999).
In this study, I conceptualize SE as a policy that sits at the intersection of three organizational fields: education, healthcare, and law. Each of these fields has its own logic, professions, and governance (Scott et al., 2000). The IDEA itself recognizes some of these distinctions by drawing a line between the “medical” as opposed to “educational” aspects of a disability (IDEA, 2004; Underwood & Mead, 1995). While a school must provide a free and appropriate education to children, regardless of disabilities, SE law and judicial opinions over time have made clear that schools are only responsible for meeting the educational needs of children, they are not responsible for providing “medical services” (IDEA, 2004; Underwood & Mead, 1995). However, case law has clarified that schools must educate students with medically complex needs in ways that ensure their health and safety, so long as a nurse or layperson is capable of providing the service (Cedar Rapids Community School District v. Garret, 1999; Lehr & Greene, 2002). Thus, though some students with disabilities may have a 504 plan or IEP for a predominantly “medical” disability, lines are drawn. There are different logics of disability within healthcare and education and these differences contribute to different practices and actions. In addition, the IDEA also specifies that parents’ recourse within implementation is to file official grievances, go through due process procedures, and/or file federal lawsuits, which requires parents to navigate the legal organizational field as well (Turnbull et al., 2020; Yell, 2019). Thus, all three fields are implicated in SE within the administrative tasks assigned to parents.
Prior research has implicitly conceived SE as its own organizational field (Bray & Russell, 2016, 2018; Woulfin & Jones, 2021, 2024). This research has contended that the field of SE is shaped by particular institutional pressures and logics. Institutional logics are the belief systems that are widely shared and which shape organizational structures and practices and individual actors’ actions within an organizational field (DiMaggio & Powell, 1983, 1991; Russell, 2011). Moreover, research from disability studies suggests that there are multiple disability logics within and across organizational fields (Annamma et al., 2013, 2016; Berger, 2013). Scholars argue that the medical disability logic uses deficit frames where physical and neurological conditions need to be “fixed” (Berger, 2013). By contrast, social logics of disability argue that social conditions create disabilities by creating barriers or failing to provide accommodations for all people to participate (Berger, 2013; Omansky, 2011; Wendell, 1997). Disability logics are also racialized. Race, like disability, is a socially constructed identity (Omi & Winant, 2014). Further, while disability and race can operate as independent social constructions, they can also be co-constructed in ways to assign Children of Color’s bodies or behaviors as “deviant” and “other,” or “disabled” (Annamma et al., 2013, 2016). The concept of organizational fields can highlight how racial inequities may be (re-)produced through these conflicting logics and educators’ and families’ interpretations of them (Thornton et al., 2012; Wooten & Hoffman, 2017).
Each of the organizational fields implicated by SE policy has its own (sometimes competing) logics, organizations, professional organizations, and actors. I conceptualize parents’ administrative burdens as being shaped by these three fields and the connections within and across them. While all actors on a child’s SE team must contend with competing logics within SE (Woulfin & Jones, 2024) and filter and adapt these logics to the organizational practices and routines of SE (Diehl & Golann, 2023) within their shared responsibilities, parents are the only ones within a SE team that support a child across fields, since there are aspects of a child’s life for which parents are solely responsible (Epstein, 2011; Minow, 1990), which may contribute to unique administrative burdens for families.
Data and Methods
Data Collection and Sample
This interview study draws on a diverse sample of 60 parents from around the United States. (Table 1 below provides some parent demographic information and more detailed information on parents and children are provided in Supplemental Appendix Tables A1 and A2 in the online version of this article.) This sample was constructed through two stages. First, I engaged in snowball sampling (Parker et al., 2019). I sent recruitment materials, including an email with a study overview and a recruitment flyer, to national and community-based organizations intended to empower parents within SE. I also posted my recruitment flyer on social media (Leighton et al., 2021). Word spread through online networks as individuals and organizations shared my materials. The study recruitment flyer advertised a $50 gift card incentive and contained a web address and QR code that linked to a study participation interest survey. The interest survey took fewer than 5 min to complete and included initial screening questions to ensure interested parents qualified for my study (i.e., they were a parent with a child with an IEP or 504 plan 4 in grades K–12.) If an interested parent did not meet these criteria, they were informed that their participation was not needed. Those interested parents who met the study requirements were asked to provide more information about themselves and their child. For example, parents were asked if they worked outside of the home. Parents were also asked to provide their and their child’s racial identity, their highest level of education, and their child’s primary disability. Approximately 220 parents completed the study interest survey, and every participant was told that I hoped to speak to a range of families and that I would email select parents for interviews in the coming weeks.
Parent Demographics, as Self-Reported.
Given the theory-building nature of this study, I then engaged in a second stage of sample construction: I used purposive sampling (Patton, 2002) to construct a sub-sample from these 220 parents to represent a range of perspectives—namely parent and child race, parent education, and children’s primary disability—which, based on the literature, I assumed would impact parents’ and children’s experiences with SE and the administrative burdens they face. I reached out to those I hoped to interview by email and included a Calendly™ link to schedule the interviews. I reached a point of theoretical saturation (Bryant & Charmaz, 2007; Glaser & Strauss, 1967) within subsamples (e.g., parent race) and across interviews at 60 parents and stopped interviewing at this time.
All interviews were semi-structured (Lareau, 2021; Weiss, 1994) and took place over Zoom™ (
I then asked parents to tell me about their child’s diagnosis and their SE journey (e.g., “Can you tell me about the process that led to your child receiving an IEP or 504 plan?”). I also asked about particular SE routines (e.g., IEP meetings, evaluations, transition planning) and about the kinds of learning parents needed to do about SE. I probed parents for more information on what supports, if any, were helpful and what supports they wished for. In addition, I explicitly asked parents if they believed their family’s background, including their racial background, impacted their experiences. Specifically, for each participant, I calmly but confidently (Lareau, 2021) stated what research has long-documented, “Black children and Students of Color might have different experiences in SE than White students and wealthy families might have different experiences than families with less money” (Artiles, 2019; Elder et al., 2021; Hibel et al., 2010; Skiba et al., 2008; Tefera & Fischman, 2020). I then asked, “How, if at all, do you see your family’s identities or resources playing out in your child’s experiences?” Because these questions were sensitive in nature, they were at the end of the interview—after I had built rapport and so as to not affect other responses (Lareau, 2021).
Data Analysis
All interviews were transcribed verbatim, pseudonymized, and uploaded to NVivo™. I then engaged in three rounds of coding within NVivo. First, I conducted a round of attribute coding (Miles et al., 2014), coding each interview based on the demographic information that participants provided in their initial interest survey and within the interview, including parent race and child race. Next, I engaged in two separate rounds of descriptive coding to gather text of the same theme together (Miles et al., 2014). In the first round, I coded deductively (Miles et al., 2014) for administrative burdens that families reported directly experiencing in their work within SE. I relied on the costs and definitions in extant literature: compliance, learning, and psychological costs (Herd & Moynihan, 2018, 2021; D. Moynihan et al., 2015) as well as racialized burdens (Baker & McCloud, 2023; Ray et al., 2023) to develop a codebook I used to code consistently. I then wrote analytic and reflexive memos about the themes I saw within each of these burdens and created data matrix displays that summarized the costs each interview participant reported experiencing and coded inductively to arrive at subthemes (Banks et al., 2023; Lareau, 2021; Miles et al., 2014). In memo-writing, an additional theme emerged: parents’ work navigating and coordinating across organizational fields. I then returned to my interviews and engaged in a round of inductive coding and memo writing for this new cost to arrive at themes and findings (Lareau, 2021; Miles et al., 2014). Thus, memos provided an opportunity to be reflexive and document my analytic process (Banks et al., 2023).
Positionality
As a final note on methods, it is impossible to separate the author’s positionality from their research (Boveda & Annamma, 2023; Milner, 2007). Indeed, recent scholarship has called researchers to be especially vigilant in how their power and privilege shape SE research (Boveda & Annamma, 2023). These scholars suggest that Whiteness and ability status are forms of property that researchers have long-used to ignore or silence the voices of disabled people, People of Color, and intersectional oppressions—especially the voices of disabled Women of Color in SE research.
The author of this article has navigated this study and her personal and professional life as a White, disabled woman who experienced her entire education as a student with a disability. She is also the daughter of educators who were vigilant in ensuring that the author received the support she needed while also providing opportunities for her to self-advocate. Moreover, the author is a parent herself. The author also trained as a school social worker before transitioning to a research career. This project was motivated by the author’s collective experiences. In addition, the author’s positionality affected data collection. Within qualitative research, including interview studies, the researcher is an instrument of data collection (Miles et al., 2014; Small & Calarco, 2022). This author’s positionality certainly affected the questions asked and the ways participants responded, perhaps particularly around issues of racism and racialized burdens. In an attempt to establish some trust and rapport with participants in the context of a Zoom or phone interview, the author offered some of her own positionality when she first greeted participants and before the formal informed consent process. Specifically, she shared that she identified as a person with a disability and as a parent of a young child with another child on the way—children she assumed were non-disabled. The author also shared she hoped to publish her study in an education policy journal in the hopes of improving SE policy. The author’s positionality then afforded opportunities and constraints for this project, a topic this paper returns to in the limitations section of the discussion.
Findings
Parents Experience Traditional Administrative Burdens and Costs Within SE
Learning Costs
Consistent with prior administrative burdens literature, I found that all parents in my sample incurred learning costs as they sought to claim public benefits through SE, which then impacted the ways parents engaged within SE. Further, I found that parents’ learning costs took three forms: first, learning about their child’s disability; second, learning about SE law, which sometimes included learning that parents have a right to advocate; and third, learning how to advocate. These learning costs findings were consistent across parent demographics.
Learning About Their Child’s Disability
Every parent I spoke with mentioned incurring learning costs about a child’s disability, though this happened at different times and in different ways for every family. Some families found out about their child’s disability early in their parenting journey (i.e., before the child was born, before the parent left the hospital with their then-newborn, or before a child was adopted). These parents had children with Down syndrome and physical disabilities like deaf-blindness and they all mentioned conducting online research before they took their child home. In some instances, these diagnoses connected parents to Child Find (i.e., formal early intervention [EI]services through their state through IDEA Part C) and could begin to give their children supports and services when their children were very small. As an example, in a joint-interview, Patrice and Brian—the parents of Blake, a child with Down syndrome—described that a coordinator helped secure needed therapies and supports to come to their home after they left the hospital with their newborn son Blake. Patrice shared, “We just had just had speech and uh, OT. And they were fantastic. I mean, we got Blake up and she had equipment to get him up and moving.” After listing some of the specifics, Brian added, “We were able to get a kid walker for him. So, we got him up where he could put weight on his feet and kind of started walking around with him with the kid walker. And they helped with all that paperwork.” As this exchange illustrates, learning about their child’s disability could be beneficial and supports like an EI coordinator could help ease the real costs associated with this learning—unnecessary time, effort, and confusion.
Other parents experienced learning costs about their child’s disability when their children were toddlers, preschoolers, or school-aged. These parents’ journeys generally took one of three paths: (a) Parents noticed some physical, emotional, or learning behaviors and went to their pediatrician about their concerns; (b) parents flagged some behaviors and notified their child’s teacher; or (c) a child’s teacher or pediatrician flagged behaviors for the parent. While no family’s evaluation or diagnosis journey was the same, all parents shared that receiving a label for their child’s disability helped them better understand their child.
A label also helped parents do research. Parents in my sample commonly discussed that joining local and national disability-specific parent groups after their child’s diagnosis gave them an opportunity to learn other parents’ stories, what their children might need, and how parents might help. For example, Nicole, a mother of two autistic sons, shared how a label not only helped her do initial research but helped her continue learning about her boys and understand both of her sons and their needs. She said, “I’m six and seven years in and there’s still things I’m finding every day. So you’re always going to learn something new, but it’s just nice to know from the get go, what you need to do.” Nicole continued to explain that her older son, Atticus’s ASD diagnosis, helped her understand her son Augustus within the frame of autism. As a result, Augustus was able to start receiving services and supports at an earlier point in his life compared to Atticus. Nicole shared, “We got [Augustus] in services right away. With Atticus, we didn’t know. We had no clue. I could have had him diagnosed way younger . . . but we didn’t know.”
Learning About SE
After a child was evaluated, diagnosed, and deemed eligible for SE, parents then had to learn about SE policy. These learning costs looked different across families, yet every parent talked about doing independent research online. Layla shared, “So, everything I was doing on my own primarily, and they were giving me, you know, information. So that’s how I did everything . . . actually going on state websites to read the statutes.” Similarly, Tammy described her learning costs, she shared, “I’ve read a tremendous amount.” These quotes were representative of what I heard from all parents.
For some families, learning costs involved attending formal trainings or workshops offered by national disability-specific organizations (e.g., United Cerebral Palsy) or legal rights organizations (e.g., Wrightslaw) to try and learn about their rights and responsibilities within SE. Notably, every state is required to have a parent training institute that provides free training to parents of children with disabilities and many districts also offer occasional training (IDEA, 2004; Yell, 2019). Though several parents mentioned attending trainings through these official centers or their districts, no parent found them to be enough. Teri explained, “There are a few seminars that I had attended early on, but like maybe one a year. They just don’t offer them enough. And I was so thirsty for, how do I manage this? How do I do this?” Despite attending these training courses several times, Teri still felt uninformed and unprepared to navigate SE for her child, so she did additional research on her own.
An additional learning cost for some parents was learning that they had the right and responsibility to advocate for their children within SE, especially within SE meetings. Parents who shared incurring this learning cost remarked that they first believed the school just told them what their child needed and what the school could provide—that these meetings were intended to be informative rather than a collaboration or a contestation over appropriate diagnoses, goals, services, supports, and accommodations. Within my sample, these parents learned about their rights after they encountered issues with their child’s school district, which then prompted them to do additional research or attend outside trainings. The quote from Nina below is representative of the experiences other parents shared: I never knew like I had an opinion, I had a voice. I could work with them as a team and really mold this IEP into what fit in my son. . . . I was really never informed [of] that, until we started running into a few problems. And I remember [a Parent Organization Advocate was] like, “No, you have a voice. They have to take you into consideration because you know your son. You can modify things.” And they really explained it to me, and I took IEP training also . . . to dissect IEPs and understand every point of it.
As Nina hinted above, parents reported that parent advocacy groups could be helpful to mitigate these learning costs for families. In addition, Paula said that prior to connecting with her local SE parents’ group, she “still didn’t understand like the fluff part [of her son’s goals] and just the wording just to get through the IEP,” nor did she know that the minutes and services proposed were aspects she could push back on. Paula shared that she did not realize “that he can have more supports than what’s giving the thirty minutes of social work. There was much more to the accommodations that can be forwarded to him.” Connecting with these groups, having a volunteer advocate counsel them through an IEP meeting, or paying for an advocate to explain the IEP process and what a parent could do were all learning costs and once parents incurred them, they reported then incurring additional compliance costs—but these were costs parents were entirely willing to accept in order to best support their child.
Even parents who knew they had a right and the responsibility to push back and actively participate in their child’s IEP or 504 plan meetings did not always know what available services, accommodations, or educational placements existed; parents had to learn about these options. Tina explained that “if you go to their website, there’s no way to see how these programs are evaluated” and that, without that information, “it’s like you’re throwing something against the wall to see what sticks” without having the information to make an informed request. Similarly, Doug shared that knowing available and traditionally provided supports could help remove learning costs for parents. He offered, “And that would be so helpful, an IEP guidebook. There probably are some commercially, but it would be nice for every school district if the school district would publish that.” He also said he believed that school districts would never do this “because it goes against the idea of rationing care, which is what I think they do.” This quote reflects a belief that school districts intentionally do not provide information on all available supports, services, and accommodations to “ration care” and save money—a common sentiment among families in my sample. In the absence of having this kind of information provided, parents had to attempt to learn about what resources might be available on their own. In the words of Sarah, “I think if parents don’t know that [training] exists” and in the absence of this knowledge, “it gives the school too much power.” In other words, every parent in my sample commented that if parents do not know what to ask for, they do not ask for it; and if parents do not ask, school districts can elect to offer less robust—and less costly—supports.
Learning How to Advocate
In detailing their experiences navigating SE and learning that they had a right He began experiencing full blown psychosis of every form. Seeing things other people couldn’t see, hearing things, feeling things . . . and when you have a child who experiences these types of symptoms, there was not a school that would touch us with a ten-foot pole. . . . I went to [our elementary] school. I was just trying to get our son set up. And [I was] sharing about what was going on, which at the time was homicidal ideation, suicidal ideation, command hallucinations. I mean the woman just looked frightened. Just me standing in her office with my son not even there. So . . . my advocacy style has been refined. I don’t withhold, but I . . . try to be strategic in how I advocate to get his needs met.
I then probed Valeria and asked her to explain how her advocacy style had changed. She replied that initially, because she “was desperate,” she “divulged a lot right out of the gate” but now, she approaches schools by “strategically sharing about what his challenges are and how they affect him and the measures we’ve taken to get him all the support he needs.” In these quotes, Valeria explained that through trial and error, she learned different advocacy approaches. Once her advocacy style shifted, Valeria was able to enroll her son in a nearby school. Though Valeria’s son’s disabilities and their experiences of being steered away from their school (Waitoller & Lubienski, 2019) was an extreme in my sample, learning and changing advocacy strategies within SE was a learning cost that every parent described.
Compliance Costs
All parents incurred compliance costs in their work as policy agents within SE, including asking for evaluations or referrals, attending IEP meetings, requesting an IEP meeting, monitoring whether their child received stipulated services and accommodations in their IEP, and determining if provided services, accommodations, and goals were appropriate. These costs were tightly connected with the mandated role that parents are required to play within federal legislation, yet they were also exacerbated or attenuated by their child’s educators.
One version of this compliance cost was parents spending a tremendous amount of time staying on top of paperwork. Teagan shared, “Oh, well you have to know how to do a lot of paperwork. There’s so many layers of support and layers to get the support that you have to stay on top of it.” This work necessarily required Teagan to spend her time determining “what paperwork we need to fill out to make sure that this happens.” Teagan also shared that in the absence of parents spending their time and providing their oversight and documentation, “you just get lost” and “it just becomes chaos.” Importantly, Teagan was an exception in my data; she was one of two families in my sample—both White, middle-class parents who were regularly physically present in their school—who described having a “mostly supportive” school district and all of the services they needed. Even in this positive context, the time required to comply with SE policy—staying on top of the paperwork, getting and providing documentation, and making sure the school staff was “cohesive” was still “just a lot” for Teagan.
Compliance costs also included the time required to attend SE-related meetings. Consistent with federal law, every parent I interviewed discussed spending time attending their child’s IEP or 504 plan meeting. However, parents incurred additional compliance costs when their child’s school district failed to perform their legally required roles and responsibilities within meetings or to inform parents about their child’s meeting. For example, Camila described the compliance costs she incurred around participating in her daughter’s, Erica’s, IEP meeting when Erica’s school district failed to comply with federal law. Camila recounted how Erica’s IEP team failed to both formally invite her to an IEP meeting and to send her materials necessary for her to prepare for that meeting, including the written IEP proposed by the school district. According to Camila, Erica’s teacher reached out during Erica’s meeting and asked her why she was not in attendance. During a quick exchange, Erica’s IEP team realized that they had forgotten to send her an invitation to their Zoom meeting. Camila recalled her shock about this event, “They forgot to invite me! . . . You know, how is this even a possibility!?”
She continued to share that she joined the call as quickly as she could during her workday and said that “we ended the call with basically, ‘I’m not signing anything’” because Camila “want[ed] to review the documents” before agreeing. Camila said her refusal to sign the document went over poorly with her daughter’s IEP team. She stated, “They’re all arguing among each other about why nobody sent me the IEP. I’m like, ‘I don’t care. I don’t care whose job it was. I need it. I need to look at it.’” According to Camila, it took several more weeks for her daughter’s IEP coordinator to reach out to her again, which occurred in a “nasty message,” that continued to ask her why she had not signed the IEP that she still had yet to receive. Here, Camila’s descriptions of the compliance costs she incurred illustrated that the (in)actions and missteps of her child’s IEP team exacerbated the administrative burdens she experienced.
SE teams’ failure to comply with the law in other ways also heightened parents’ compliance costs. For instance, school districts are required to collect and present data on children’s progress towards the goals listed in IEPs, but this did not always occur for families in my sample. Thus, their compliance costs included collecting their own data on their child’s progress and bringing that data to their child’s IEP meeting. Nina helped highlight these costs: I kept everything, I noted everything. Everything. If there was a problem, I sent emails . . . so it’s paper trail. Um, and [the principal] was so upset that I had actual data that definitely supported my argument of why my child needed an adult to monitor him during transition . . . during regular class. And I said, “Show me your data. What data do you have that I’m not seeing that, you know, supports your allegations?” And they did not have any . . . They were not even collecting their data, even though they were supposed to.
In her interview, Nina detailed numerous compliance costs; she asked for and attended multiple meetings, sent emails, and documented instances she deemed important. She also shared that her son’s, Santi’s, school was not complying with the IDEA when they failed to collect data to measure his progress towards the goals stipulated in his IEP. But Nina did; she spent time and effort to collect evidence of her son’s academic performance and lack of progress, additional compliance costs and ones beyond the requirements of parents’ administrative work in SE policy. She did this to have evidence to present in IEP meetings to support her request that he receive additional supports, namely a paraprofessional. Because Nina collected and organized data while the district did not, Nina was eventually able to compel her son’s school district to provide a paraprofessional for him. Nina also implied that these contentious conversations were time-intensive when she said that her son’s IEP meeting could take “four or five hours.” Arguments about data cost Nina additional time within and across meetings. Here, too, the school officials’ discretionary, albeit illegal, actions compounded the compliance costs Nina received. Importantly, though some of the quotes above describe illegal practices and violations, they are representative of the experiences parents shared across my 60 interviews. They are not extremes.
The compliance costs that parents incurred could also come at a financial cost for families. Roughly 40% of my sample described working part-time to comply with SE and to meet their child’s needs in and outside of school—including completing paperwork, shepherding their child to various therapies and appointments, communicating with their child’s school and their health insurance, etc. Other parents remained in the workforce but spoke of reducing their hours or (temporarily or permanently) leaving the workforce altogether. The parents in my sample who did mention this as a compliance cost often joked about how those on the outside—including their friends and family—might think they had “extra” time, including Sarah, who said, “You’d think working twenty hours a week I get to spend all this time with her. I don’t, I chase paperwork.” Similarly, two mothers in my sample described being fired from their jobs because they missed work after their child’s school kept calling them and requiring them to come pick up their children after “behavior problems.” Thus, compliance costs could also have real economic costs for families—costs that affected parents of all races.
Psychological Costs
All families in my sample also incurred psychological costs as they navigated SE—costs they incurred as they simultaneously experienced other administrative burdens, including the learning and compliance costs explained above. Again, only two families described having an “easy” relationship with a “supportive” school district, and even these parents experienced stress and frustration at different points in their children’s educational journey. The overwhelming majority of parents in my sample expressed stress and frustration but also grief, sadness, anger, disappointment, marginalization, and isolation. Yvette summed up her experience by saying, “It’s been a lot.” Consistent with prior scholarship on administrative burdens (e.g., Herd & Moynihan, 2018, 2021; D. Moynihan et al., 2015), the psychological costs parents experienced were also associated with the compliance and learning costs that families incurred. Many of these sentiments have been expressed implicitly within discussions of compliance and learning costs already presented in this paper.
Yet, parents also explicitly mentioned the psychological costs and the ways they felt while they worked on behalf of their children and interacted with their child’s school district. Nina, who described encountering pushback from her child’s IEP team at various points, shared that her son’s principal accused Nina of lying about her son’s disability at one meeting where district officials were also present. Nina recalled one meeting where the principal “looked at [her] and she said, ‘I don’t even think your child has autism. I want to see proof.’” Nina shared that she “was so offended” by this principal and continued to recall this meeting, I remember taking out [her son’s] diagnosis, but then I was so upset that the principal would say that. And I remember slamming his diagnosis in front of her and [I] said, “Do you want to read it, or do you want me to?” And her boss was like, “We need to talk.” You know . . . it was upsetting because these are people that, you know, tell you, “Oh, we want the best for your child.” But then I discover it’s not true . . . And I have fought so much.
Here, Nina explicitly stated that she was upset. She also implied frustration and disappointment with her child’s school, which she believed should be trying to partner with her to better serve her son. Other parents shared this disappointment, including Toni, who said, “Also, I met a lot of moms at the same school with the same issues, same problems, same frustration. And that’s kind of sad, because they’re there to help us. . . . We need all the help that we can get.”
In a similar vein, parents described frustration and confusion with why they needed to wait for their child to fail academically before the school district could or would intervene and offer supports. Tammy recounted, “It almost feels like you’d have to wait to fail and I, I have felt constantly gaslighted for asking for things for my child to keep him from failing.” Tammy, a pediatrician, was also profoundly confused because her profession trained her to intervene early for prevention. In our interview she rhetorically asked, “Why would you wait till a child is harmed?” Vera echoed these sentiments almost exactly, saying she asked about the “glaring red flags” she noticed her son exhibiting and she “repeat[ed] those concerns at every IEP meeting” where she felt, “quite frankly, gaslighted by the school district.”
These psychological costs had lasting damage to parents. Repeatedly incurring these costs damaged parents’ view of their relationship and the ways they interacted with their school district and SE teams. Natalie reflected that she had “always tried to approach this as a partnership and with empathy. But it’s getting harder and harder to approach this relationship with my school and not feel some animosity, frustration, and anger.” Indeed, losing valued relationships with their child’s educators and other parents was yet another psychological cost for some parents, especially those with a pre-existing relationship with their child’s school prior to a child’s diagnosis. Nivia had a warning for these parents: “The relationship is going to change because it goes from this . . . I don’t want to say ‘casual’ . . . but it moves from a certain kind of relationship to a legal relationship. And parents are under-equipped for that.” Nivia also said that relationships with other families could also change after a child’s diagnosis. She shared, Other general education families that you’re friends with . . . are not going to stand up with you. They will not advocate with you. They will say things like, “But my kid hasn’t experienced this issue,” or “We haven’t run into that with the principal,” . . . So, it will feel like you’re being gaslit. They don’t mean to, but that’s what happens.
Nivia continued to share that feeling abandoned by parents had stood “on the playground with” was “one of the hardest heartbreaks” for her. It was especially painful for her when she cautioned other parents to be prepared for when other parents would say, “‘Thank you,’ in private for something you’ve done publicly,” while they did not stand with her in public “because they don’t want to be on the line.” These quotes from Nivia illustrate that parents can experience isolation, grief, disappointment, and a loss of autonomy when they “don’t have a choice” and advocate for their child, while parents of non-disabled children do not.
Racialized Burdens
The overwhelming majority of parents of Children of Color (38 of 42 parents), including 7 of 8 White parents to Children of Color, described experiencing racialized burdens (Ray et al., 2023) within their work advocating for their children in SE. Racialized burdens for parents of Children of Color consisted of combating racialized lowered expectations for their children’s abilities. Parents of Color reported facing additional racialized burdens, including the need to code switch and generally not make White educators feel threatened or uncomfortable. Thus, in addition to incurring direct racialized burdens, racialized burdens also compounded other administrative burdens for Families of Color.
Racialized Lowered Expectations
Consistent with a corpus of literature on Students of Color in SE (Artiles, 2019; Harry & Klinger, 2014; Harry & Ocasio-Stoutenberg, 2020; Love et al., 2021), parents of Children of Color in my sample described encountering racialized lowered expectations for their children. These racialized lowered expectations complicated parents’ work to secure diagnoses or evaluations. Parents talked about teachers assuming their child was “lazy” or simply not capable of being an “A student.” Thus, these parents believed teachers viewed their children as less capable and/or blamed the students’ character instead of seeing evidence of a potential disability. For example, Mabel, a Black mother to a Black child, said that though she “hate[d] to say it,” she believed “because we had Black skin, the White teachers did not pay her any attention, and they really looked at it as her being bad and not really wanting to do work, lazy . . . they were really labeling her.” Similarly, Winifred—a Latina mother to a biracial daughter, Emma—said that educators blamed Winifred for her daughter’s behavior in school; they assumed Emma lived in a “chaotic household” instead of reassessing Emma for autism as Winifred requested. These racist lowered expectations for Emma created additional compliance costs for Winifred—including additional time, communication, and in-person meetings—as she fought for Emma to be reassessed. Winifred also experienced psychological costs during this time, believing that her daughter was being harmed—a belief that was validated when a school psychologist finally agreed that her daughter was being “damaged” by a school principal who refused to accept an autism diagnosis. In these cases, parents believed that deficit-based views of their Children of Color impeded educators’ ability to recognize a child’s disability.
Similarly, parents of Children of Color also reported that educators’ low expectations for their children could result in educators proposing fewer SE services, supports, or accommodations for their children. Mabel explained that she had a difficult time securing occupational therapy (OT) services for one of her sons. She shared, “There were services for the OT that they didn’t wanna give me.” Mabel strongly believed that her son needed OT services to continue to grow, but she had to combat what she saw as an evaluator’s low expectations to get these supports. She recalled, “And this OT’s evaluation, they did, they observed him. And she thought because she saw him write letters that was good enough. That’s not good enough.” She recalled begging her son’s IEP team to “look at it from my perspective and tell me if you see the same thing.” Mabel reported that she was eventually able to combat these lowered expectations and secure additional OT services for her son, but she did this by collecting some of her son’s past writing work and then sharing that work with her son’s SE team in IEP meetings, where she continued to push the team to recognize her son’s potential.
Combating Racist Parental Stereotypes
In addition to working to combat low expectations for their children to receive appropriate diagnoses and to access needed supports, Parents of Color also described incurring additional racialized costs as they tried to comply with the requirements of the IDEA. For example, Camila said that she was explicitly called “hostile” by her daughter’s educators when she pushed back and asserted her rights and the district’s failure to comply with those rights (i.e., to inform her of the IEP meeting and to share the IEP in advance). As another example, Vanessa shared that she was “so angry” after a year of going back and forth with a teacher who refused to listen to her or acknowledge her concerns. Yet, she also reported that at no point did she believe she could let this teacher or other district staff see her emotions and frustrations. She shared “I can’t show anger” because she, a Black woman, believed her anger would be seen as aggression, and she feared that her child’s district would retaliate by refusing to help her son.
In addition to not showing anger or other emotions, Parents of Color described code switching in an effort to be treated with respect and viewed as non-threatening by their child’s educators. When asked how her family’s background affected their experiences, Tina began discussing her decision to code switch around predominantly White educators and within White spaces. Tina explained that “people decide whether or not to codeswitch,” but, I am choosing to speak this way [because] I do feel that I get treated differently. I think that if I was speaking ABE [American Black English] for that first school and I was seen as aggressive . . . everyone would have probably dismissed me . . . as someone who is aggressive, someone who is the problem, and not the school.
Tina continued to share her belief that codeswitching is “a common response” for Families of Color within SE and education settings to work on behalf of their children. This codeswitching is another example of racialized burdens and added labor that Parents of Color take on within their SE advocacy. These were costs I simply did not observe for White families.
Linking Costs
I started this investigation theorizing SE policy, as cutting across traditional organizational fields, or recognized areas of social life (DiMaggio & Powell, 1983; Wooten & Hoffman, 2017), though it was unclear how, if at all, the cross-field nature of SE would contribute to families’ experiences navigating SE. I found that parents’ work navigating the intersection and differences across organizational fields created an additional kind of administrative burden for families, which I name
Securing Private Diagnoses
In my interview sample, parents explained that sometimes their children’s entry into SE and the services and supports they received were dependent on evaluations occurring in the healthcare— When we went to school and he started school, within a month they put him in speech therapy. And then the school . . . lost a provider for anybody who didn’t have an IEP, [and] he stopped receiving speech, because . . . it wasn’t mandatory. But, we couldn’t get an IEP because we didn’t have a diagnosis of anything at that point. So, it was like, well, “You gotta get him tested for that,” and in order get him tested, we had to be established with a therapist. So, we got established with . . . a medical provider to get the testing done.
Above, Veronica described a process where the school would not provide services without a diagnosis, but they also would not do the diagnosis themselves. Rather, Veronica felt that she needed to draw upon the medical logic of disability (Berger, 2013) and secure a diagnosis from the healthcare field to legitimize her son’s disability for educators (DiMaggio & Powell, 1983, 1991; Wooten & Hoffman, 2017). Beyond serving as mere “legitimacy” for educational services, Veronica believed the educational routine for SE evaluation was dependent on an evaluation and diagnosis from the field of healthcare. The parent, Veronica, was expected to link the education and healthcare fields by bringing the diagnosis from healthcare to education for her son to receive SE-related supports and services in school.
Brooke had a different kind of experience. Her daughter, Emmy, had a rare genetic disorder. Brooke described that Emmy’s school district easily accepted this medical diagnosis. Yet, it still fell to Brooke to navigate the healthcare field to procure documentation of her daughter’s condition and to garner letters of support and recommendations from Emmy’s medical providers. She then took this documentation back to Emmy’s school and worked to assess appropriate school-based accommodations based on her understanding of how Emmy’s medical needs would translate to educational needs. She explained this linking cost by saying, But it was a long process in terms of writing the IEP and figuring out what kind of accommodation she needed. So, I went and I got letters from her geneticist and her pediatrician with recommendations for accommodations . . . . Like, because of this factor of the disease, then she needs this accommodation in school . . . and I presented like a binder full of procedures, and warning signs, and like typical issues with [a rare genetic disease] and stuff for the teachers to be aware of. And then a list of all the accommodations that she would need for school. And we just went through them one by one.
Brooke’s quote highlights how, even without “pushback,” the linking costs of taking diagnoses from one field to another can be tremendously time-consuming and burdensome for families. She linked the norms, expectations, and logics from one field to another by working with medical providers to translate medical language, services, and routines into educational language and routines for educators. It fell to Brooke, a parent, not educators, to do this work for Emmy’s IEP.
Coordinating Therapies Across Fields
Another potential linking cost for parents was the responsibility of coordinating therapies across school and outside providers, which could include different combinations of therapies and services across and within fields. Depending on the child’s disability, needs, and available options, these services could include different kinds of therapy (e.g., cognitive behavioral, feeding, or occupational) and ongoing medical appointments, screenings, and evaluative testing. The exact combination of services depended on the individual child and parent. For example, Toni shared that her daughter “takes all kinds of therapy. Physical, occupational, speech, and . . .horse riding, too. And she’s taking swimming therapy, too. Aqua therapy.” For Toni, coordinating these activities across healthcare and education was an attempt to take advantage of any and all opportunities available to support her child. These therapies were “extra” and not because she believed her daughter was lacking services at school.
However, other parents described seeking additional services and supports because they believed their children were not receiving necessary educational supports at school. For example, Amari shared that their family supplemented school speech services, saying, “I started looking for speech therapy outside of the school, because I knew that he needed it.” She described this as “outsourcing,” sharing, “. . . He was seeing a speech therapist outside of the school. He was receiving speech therapy at school twice a week, and he was receiving speech therapy outside of school once a week. So he was three times . . . he was, he was receiving speech therapy three times a week.” Through a combination of school- and privately provided speech therapies, these parents were able to secure the supports they believed their children needed—linking the medical and education fields and often stepping up in places they believed the school should be.
In addition to securing and transporting their children to these therapies, it also fell to parents to communicate across providers in different organizations and across fields. This communication was necessary since what a child was learning and working on within one therapy likely had implications for another. For instance, Michelle explained that she had “to have all of my documents together” to communicate across and within sectors. She elaborated, So, all of Cameron’s neuro-psych stuff, specific notes you know from his psychiatrist or mental health therapist or resources they’d given us through you know the different therapies that might be helpful when he’s in the classroom. All of that she has said make sure that you have that . . . keep that up to date and notify the school . . . of like any changes.
Michelle’s quote exemplifies that she, the parent, was responsible for communicating Cameron’s needs and progress to all providers; there were no systems across the healthcare and educational fields that allowed providers to speak to one another. All the coordination fell to Michelle. This was representative of all families’ experiences in my sample among children who received both private and school-provided therapies.
Coordinating and Making Sense of Different Diagnoses or Diagnosis Across Fields
Some parents also described differences between medical and educational diagnoses, which reflected different logics of disability across fields. Other families described sometimes receiving the same diagnosis across educational and medical settings but said that their child’s disability required different medical as opposed to educational supports and interventions—this required parents to make sense of the competing logics of service provision across fields. The quote below from Julia illustrates that there could be a difference in how fields conduct evaluations, which could affect the services and supports a child is entitled to. When asked what advice she would have for a friend on how to navigate SE, she said: So, I would have [the pediatrician] do two referrals. So, one for school psychologist and one for a medical psychologist.. . . I think their evaluations are different. But that would have the child and the parent covered from the school, and then medical side also.
Another version of the linking cost of competing diagnoses occurred when a child’s school district refused to accept or provide services for a medical diagnosis. For example, Flor shared that her son “had [an autism] diagnosis. He had a bipolar diagnosis. He had a sensory processing disorder diagnosis. And, an unidentified mood disorder. Those four diagnoses.” Despite these four medical diagnoses, Flor’s son’s educational evaluation only identified and served a speech disability. Flor reflected that she initially “kinda let it go” because she “was reassured by the teachers and everybody.” Moreover, Flor said that her son’s SE team actively pushed back against the medical diagnoses in meetings, which caused Flor to doubt them as well. Flor shared that his IEP continued like this from kindergarten “up to third grade” when her son broke his arm at school. At this point, Flor began to question her son’s safety, and she asked for more support at his school. She added that even though she had worked to secure private services for her son, she believed their school district “missed the boat” in providing him the services and supports he needed early on because they refused to accept medical diagnoses.
Discussion
The findings in this paper have implications for research, policy, and practice. For research, this paper builds on the relatively nascent literature on administrative burdens and extends the theory to K–12 and special education. More specifically, while much of the extant administrative burdens literature has focused on how the formal and informal policymaking creates burdens within various social policies (Herd & Moynihan, 2018, 2021; Moynihan et al., 2015) and has examined how burdens embedded within policies differ by the population they are intended to serve (Heinrich, 2018; Moynihan et al., 2015; Ray et al., 2023), fewer studies have shown how individuals actually experience burdens when they try and claim their public benefits or exercise their rights (Baker & McCloud, 2023). This paper builds on existing literature by providing additional illustrations of how private individuals directly experience burdens. Still, this paper focused squarely on parents’ experiences of administrative burdens. Future research should contend with how educators experience administrative burden within SE and how educators’ burdens then shape parents’ experiences. This kind of work may be especially important given proposed governance and funding changes at the federal Department of Education, including funding cuts, and recent legislation that has made cuts to Medicaid, which may further limit school services (Blad, 2025; Geduld, 2025; Weaver et al., 2025).
In addition, by leveraging organizational theory with administrative burdens, I extended administrative burdens theory by naming, defining, and describing an additional cost: linking costs. This is important because it shows how policies that require private individuals to work across traditionally siloed aspects of society (i.e., organizational fields) may lead individuals to encounter additional costs. In turn, these individuals may need additional support to navigate the intersections of different fields. Future research should contend with how (if at all) and under what conditions individuals experience linking costs as they work to claim public benefits or rights in other policy spaces, or how public sector administrators encounter these linking costs within their work attempting to help their clients.
Further, my findings on the racialized burdens families in my sample described contribute to the growing body of empirical research documenting how racialized burdens are experienced. Thus, findings from this study—especially when put in conversation with existing research on the experiences of Parents of Color (e.g., Buren et al., 2020; Gillborn et al., 2016; Harry & Klinger, 2014; Pearson & Meadan, 2018)—also help identify a mechanism to help explain long-observed racial inequities in SE implementation. Future ethnographic work could directly compare families’ experiences and document how families and children of different backgrounds are treated by educators in the same setting. In addition, future mixed-methods investigations should explore how, if at all, parents’ reported costs are related to children’s SE outcomes, including systematic differences in disability labels, services, and time in general education settings.
This paper also has implications for organizational theory. Extant research on organizational fields has tended to pay attention to how organizational or sector-level actors (e.g., professional organizations) within a field remain constant or adapt. In this paper, I use the concept of organizational fields to better understand the ways that competing logics, pressures, and norms across fields affect individuals’ experiences and actions implementing social policy at the intersection of those fields (Diehl & Golann, 2023; DiMaggio & Powell, 1983; Scott, 2013; Wooten & Hoffman, 2017). For, while organizations may largely belong to one field, individual actors within organizations or who are targets of many social policies must often navigate across them. Parents, as individual actors, must contend with competing logics, norms, and governance structures (Scott et al., 2000) that are filtered and adapted within their local school or school district organizations (Diehl & Golann, 2023). Future research should continue investigating how individual actors filter logics, messages, and norms from different fields and apply those to another (i.e., educational) field and contribute to organizational persistence and/or change.
In addition, the administrative burdens documented in this paper have direct implications for policy. Administrative burdens are often debated outside of public discourse; instead, they are added or removed through agency guidance (Herd & Moynihan, 2018; D. Moynihan et al., 2015; D. P. Moynihan et al., 2016). While the future of SE is uncertain in the second Trump administration, the U.S. Department of Education or state agencies could address some of parents’ costs. For example, attending to differences in medical and educational disabilities and finding ways to automate how a medical diagnosis could transfer to educational settings are examples that have the potential to remove administrative burdens for families.
These findings also have implications for practice. While some costs are codified into law (e.g., the compliance costs of parents attending their child’s SE meetings), other burdens were the direct result of educators’ discretionary actions. For instance, many of the psychological costs described in this paper might have been attenuated had educators treated parents with more respect. Further, the racialized burdens that I explored in this paper appear linked to individual educators’ deficit-based views of Children and Parents of Color (for example, Artiles, 2022; Harry & Klinger, 2014) as well as organizational practices that perpetuate White supremacy (Ray, 2019). These internalized beliefs and practices can change (McCambly, 2024). Beyond reducing psychological and racialized harm, educators can also work to remove some of the compliance, learning, and linking costs from families. For instance, school districts could partner with local parent organizations to help build trusting and collaborative relationships (e.g., Epstein, 2011; Ishimaru, 2020) and develop useful, accessible, and culturally-sustaining trainings or develop a mentor program to pair families of similar backgrounds to ease parents’ burdens. These are just some examples, but they highlight that educators and leaders have discretion to help attenuate some costs parents experience within SE policy.
Finally, this study is not without limitations. For instance, this paper draws from 60 interviews with a non-representative sample: All study participants spoke English and most participants had some postsecondary education. Further, as previously discussed, the author identifies as a White, disabled woman who is a parent of children assumed non-disabled. While the author worked to employ cognitive empathy to build trust and understand participants’ meaning during the interview and analysis (Small & Calarco, 2022), there is distance between the lived experiences of Families of Color navigating SE and the author’s interpretations. Thus, it is possible that the costs documented in this paper are incomplete. Specifically, the racialized burdens named are likely non-exhaustive nor fully documented. In addition, this paper is entirely reliant on participants’ self-reports. I was unable to observe evaluations, IEP meetings, or any interactions with educators or medical providers. It is possible that these kinds of observations would have yielded differences in what and how parents experienced administrative burdens, including linking costs and racialized burdens. More research is needed in this area.
Conclusion
All families in my sample experienced learning, compliance, and psychological costs. On the one hand, this was unsurprising, given how these costs mapped onto parents’ responsibilities within the IDEA. However, I also found that the discretionary acts of their child’s educators could worsen or help ease these burdens. In addition, while I did not see differences in self-reported administrative burdens by parent or child race, Parents of Color and parents of Children of Color experienced additional costs in the form of racialized burdens. These racialized burdens imposed both direct and indirect costs. Finally, I found an additional cost currently unaccounted for in the literature: linking costs, or the burdens parents felt as they worked to navigate the intersections and differences across separate organizational fields, namely education, and healthcare. While SE policy sits within this intersection, families are often the only ones navigating all fields for their child—including the sometimes-competing logics, different organizations, and different actors. Within the intersection of healthcare and education alone, parents incurred linking costs as they secured diagnoses, coordinated private and school-based therapies and interventions, reconciled competing diagnoses or therapeutic approaches across fields, and attempted to create a systematic approach to support their child.
Supplemental Material
sj-pdf-1-epa-10.3102_01623737251378492 – Supplemental material for “You Have to Stay on Top of It”: Parents’ Experiences of Administrative Burdens in Special Educations
Supplemental material, sj-pdf-1-epa-10.3102_01623737251378492 for “You Have to Stay on Top of It”: Parents’ Experiences of Administrative Burdens in Special Educations by Jennifer R. Cowhy in Educational Evaluation and Policy Analysis
Footnotes
). I am deeply grateful for your trust and vulnerability. Second,thank you to Cynthia Coborn for her mentorship and guidance throughout my dissertation work,including critical feedback and careful reads of several versions of this paper. I also thank Jim Spillane,Quinn Mulroy,Heather McCambly,and Michael Hensley for their written feedback. In addition,thank you to Tabitha Bonilla,Sarah Woulfin,Jennifer Lin Russell,Erica Turner,and Chris Torres who provided mentorship,encouragement,and opportunities to discuss this study. Finally,thank you to the editors and anonymous reviewers who provided highly critical but encouraging feedback—your work made this a significantly better paper. Thank you.Declaration of Conflicting Interests
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References
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