Justice Beyond the Courts: The Role of Knowledge in Securing the Rights of Families with Neurodivergent Children

Abstract

Access to justice (A2J) has been a prominent area of sociolegal scholarship, and its findings have significantly informed legal reform efforts. A2J scholarship has focused on disparities in court proceedings and has argued that the navigability of the legal system explains unequal access to the law more than knowledge of the law itself. However, courts are not the only venue for securing rights, and most rights disputes never reach them. In the United States, neurodivergent children possess legal entitlements and protections that are inconsistently and diffusely administered. This study tests the durability of A2J’s core findings by examining how knowledge disparities affect access to justice beyond the pursuit of remedies. Based on surveys and interviews with parents of neurodivergent children in Arizona, this study examines how knowledge disparities shape families’ ability to secure their rights and entitlements before engaging the courts. Substantive expertise explains rights inequality as families begin to actualize their rights and entitlements, while relational expertise remains significant in legal and non-legal rights contestation. The results add greater dynamism to A2J research, open new lines of inquiry, and demonstrate that reform efforts must look beyond improving remedial pathways to more equitably promote human rights.

1. Introduction

Principle five of the United Nations’ Declaration of the Rights of the Child states that “The child who is physically, mentally or socially handicapped shall be given the special treatment, education and care required by his particular condition” [1]. It became international law in 1990 through the Convention on the Rights of the Child. To date, every member state of the United Nations has signed and ratified this human rights treaty, except the United States.

The nature of “treatment, education, and care” has changed dramatically over the subsequent decades due to profound advances in medical research, technology, and public understanding of disability. Nevertheless, we know that not all children have benefited equally from these developments. This may be especially true for neurodivergent children, those whose mental or neurological functioning differs from neurotypical functioning (e.g., [2,3]). As such, it is important to understand how neurodivergent people and their families seek remedies for unequal human rights and access to justice.

The field of Access to Justice (A2J) has been of keen interest to empirical and normative scholars and policymakers. Parties accessing and marshalling the organs of legal institutions are key to understanding the gaps between the law as written and the life of the law. This can be evaluative, the extent to which the State lived up to its own expectations. It can also be normative, as political and legal theorists may consider access to justice an intrinsic good or a good conditioned on an overall system’s justness. A2J has been particularly concerned with the former. The international collection of scholars has earned thousands of citations, millions of dollars in research grants, support from governments and legal reform organizations, and top prizes from academic associations and popular awards such as the MacArthur ‘Genius Grant.’

The empirical orientation, paired with the need for easily measurable interventions and outcomes, has led the A2J program to focus on justice in the courtroom. This, to be sure, is an important moment for many parties seeking just outcomes in legal disputes. However, most cases never reach court [4]. Parties might not know their rights or how to file a claim, might fear stigma, scrutiny, or retaliation, may not afford the costs, might settle the issue informally, or may decide that the harm is not worth the effort of navigating the legal system. This poses a considerable limitation on A2J’s ability to inform policy and make broader claims about the law’s relationship to society.

While the A2J findings have been intellectually rich and contributed to effective reforms aimed at closing justice gaps, their base findings and assumptions are suspiciously uniform. This may be an understandable consequence of focusing only on in-court dynamics. But it is not clear if their findings would hold outside of Sandefur’s foundational scoping conditions: (1) civil law is reasonably settled and (2) parties are already within court proceedings [5].

The ability of neurodivergent children in the United States to secure their legal entitlements and protections is an ideal topic of inquiry for testing A2J’s central holdings. The United States has a multiscalar legal regime, with federal laws and grants interacting with state policy and municipal rulemaking. Public and private parties, like schools and healthcare providers, are legally responsible for resourcing and upholding the rights of neurodivergent children. This dynamic rights landscape is further complicated by changing public and medical understandings of disability and neurodivergence, and a variety of alternative dispute systems in addition to court proceedings.

By studying how knowledge disparities affect access to justice beyond the pursuit of remedies, this study opens a new line of inquiry for sociolegal research interested in access to justice. Additionally, by studying families with neurodivergent children who may use legal and quasi-legal forums to resolve disputes, this study reconsiders the importance of A2J’s going assumption that civil law and civil procedure are formulaic. Rather than refute A2J’s principal findings, the results of this article suggest that it is worthwhile considering how to improve access to justice before the courtroom and that addressing earlier forms of inaccessibility requires benchmarks based on different principal resource gaps.

1.1. Access to Justice

The ability of parties to secure rights and liberties and to seek redress through the state has long been a central interest in sociolegal studies. Sandefur is credited with helping to marshal this interest into a coordinated field of study called Access to Justice (A2J) (ex. [6]). Sandefur’s work was a pathbreaking study of inequality in civil law proceedings. She found that a lawyer’s knowledge of the law explains little about how they achieve better outcomes for their clients than pro se litigants [5]. This substantive expertise is less helpful because most civil law disputes involve routine issues and settled law. Instead, relational expertise, knowledge of the institutional and procedural rules and dynamics, best explains why pro se litigants often fare worse than their similarly situated peers with legal representation. Because many pro se litigants represent themselves due to an inability to afford legal representation, this is a profound site of compounding inequality.

However, Sandefur noted that because relational expertise is not about the law itself, there could be a variety of cheaper, more effective reforms than hiring more lawyers to reduce these ‘justice gaps’ [5,7,8]. A variety of studies have considered how to help pro se litigants [9,10], how active judging can narrow the access gap [11,12], the consequences of varied access to judges in rural settings [13] and different legal systems (ex. [14]), legal education [15], and the role of AI and other technologies [16,17].

The focus on litigants, judges, and courtroom technologies has been fruitful. Not only are these mainstays in legal proceedings, but focusing on courtroom elements is analytically advantageous. The spatial, temporal, and processual regularity courts strive for can make it easier for researchers to test interventions and variables. Consequently, this has led scholars to assume that the relative value of relational knowledge over substantive knowledge is uniform and constant, even though neither Sandefur nor anyone else drew that conclusion from empirical observation. That flatness is paired with an unfortunate narrowness in access to justice research. York et al. [4] repeated the durable finding that most civil claims are resolved before parties engage in court proceedings. This study makes a critical intervention into the extant literature by exploring the relative value of relational and substantive knowledge over time and by considering how these forms of knowledge shape parties’ access to justice before litigation.

1.2. Neurodivergence

The neurodiversity paradigm starts from the general proposition that “diverse minds and brains exist” [18] (p. 74) and [19] and straddles medicalized and social constructivist models of disability. Unlike medicalized approaches, it avoids assuming that neurodivergent people must have a deficit and rejects the pathologizing impulse that neurodivergent people must be cured of something. However, unlike radical constructivist approaches, neurodiversity scholars simultaneously recognized that fallible logics can nevertheless contribute to the betterment of some neurodivergent people’s lives. This plasticity has been a defining feature of neurodiversity since the concept’s creation in the 1990’s [20], as disabled people active in the disability rights and autism rights movements experimented with different movement frames (see [21]). Autism, ADHD, Down syndrome, Tourette syndrome, and dyslexia are some of the more common sublabels within the neurodiversity umbrella. Parents in this study identified their children using sublabels, neurodivergent, as being disabled [22] or having a disability. The changing discourse around neurodiversity is dynamic, subject to multiple causal forces [23,24], and has long been a site for broader social and political contestations [25,26,27,28,29]. Regardless, respondents consistently reflected the pragmatic underpinnings of the neurodiversity paradigm, invoking medical and constructivist talk when helpful, while trying to avoid negative consequences of either frame.

1.3. Neurodivergence and the Law

In the United States, families with neurodivergent children have rights and resources through a complex, multiscalar legal structure comprising laws, rules, programs, and judicial findings at the federal, state, and municipal levels (see [30]). At each level of governance, a variety of agencies and private–public partnerships are responsible for providing resources and adjudicating disputes over rights and entitlements. The Americans with Disabilities Act (ADA), enacted in 1990 and revised in 2008, prohibits public entities from discriminating against a ‘qualified individual with a disability.’ The Individuals with Disabilities Education Act (IDEA), also enacted in 1990, established the right of disabled children to receive a “free appropriate education” (FAPE) in public schools. To fulfill the FAPE standard, schools are mandated to identify and evaluate children, and, following a determination of need, provide disabled pupils with tailored services outlined in an individualized education plan (IEP). The IDEA also outlines parents’ rights to seek independent evaluations and to appeal the determinations of the local education agency. Part D of the IDEA outlines a funding mechanism for how the federal government can help fund children’s needs, training and information services for educators and parents, and some services for parents.

There are important state-level Arizona laws that inform the rights backdrop of this study. In 2008, before the federal Affordable Care Act was enacted, Arizona passed the Arizona Autism Insurance Law (also known as Steven’s Law), which requires health insurance plans to cover diagnostic and therapeutic services for autism. However, like many states, Arizona has struggled to fully comply with federal law, resolve teacher shortages for ‘special education,’ and meet its statutory funding obligations for both general education and resource-disabled children. By 2017, the state had underfunded special education programs by at least $79 million, based on its own funding formula [31]. Arizona voters approved Proposition 123, allowing the state to draw $3.5 billion over 10 years to help meet its education funding obligations. It remains to be seen if Proposition 123 will close the funding gap.

Notably, Arizona has a longstanding, active statewide voucher program called Empowerment Scholarship Accounts. With $332 million allocated in FY 2023 alone, this large, growing allocation has challenged the conventional funding model for many school districts, affecting staffing, resources, and other capital investments [32]. The state government allocates funding to school districts on a per-pupil basis, as well as through supplementary grants, programs, and offsets. The state utilizes a weighted formula to supplement the per-pupil model, providing additional funds for students with disabilities, ranging from $501 for a child with mild delays to $24,468 for autistic students or those with multiple or severe disabilities [33].

2. Materials & Methods

The data for this study is derived from 51 surveys and 29 interviews with parents of neurodivergent children in Arizona. Most surveys and all interviews were conducted at two public resource fairs in Maricopa County, Arizona, where as much as two-thirds of the state population resides. In addition to taking the surveys and being interviewed at these events, participants shared the survey and study information with others, which generated a modest snowball effect [34] (p. 14). The study sites were selected for convenience. Research and ethics protocols were observed, and the study is compliant with the Declaration of Helsinki and was subject to institutional review (IRB24-1251).

The survey consisted of two parts. The first consisted of a series of standard demographic questions about the parents and their children. The second consisted of a series of thematically organized, free-response questions aimed at understanding families’ healthcare, educational, social, and other experiences. These questions aimed to encourage free expression on a topic and to avoid presupposing respondents’ experiences and perspectives. The findings used in this paper were not the study’s primary focus and constitute a narrower focus on issues regarding access to justice.

The interviews were effectively oral administrations of the survey. Some began as prospective participants, skeptically discerning the project’s intention or considering whether the kinds of questions were sufficiently interesting to warrant their participation. Most interviews were initiated by a survey respondent who wished to discuss something that spanned multiple questions, to drive home a point, or to tell a story that felt better to say aloud rather than write down. Contemporaneous notes were taken for each interview.

The survey results and interview notes were independently coded by three researchers to improve inter-rater reliability, minimize confirmation bias, and credibility [35]. The coding process was iterative and inductive [36,37]. The balance between independent coding and recursive scrutiny was intended to enhance the validity of the codes. Results were coded as to whether the information provided was substantive (e.g., about their children, health and medical issues, legal rights) or relational (e.g., identifying professionals, institutions, and informal sources of support) (see

Table 1. Operationalization and Coding Framework for Substantive and Relational Knowledge.

Type of Knowledge/Capital	Example Codes/Phrases (Grouped)	Indicates/Represents	Behaviors/Actions
Substantive Knowledge	- Rights/laws - Resources/Services - Expert language (ex., using appropriate jargon and framing of knowledge for resource providers)	Knowledge and understanding of legal entitlements, diagnostic categories, policy details, and service options, ability to use specialized terminology and recognize resource gaps	Researching online or in print, attending informational sessions or workshops, consulting documentation, posing detailed questions to providers or officials
Relational Knowledge	- Institutional actors (Teachers, principal, therapists, district officials, etc.) - Institutional processes (Resource and appeal seeking)	Awareness of key stakeholders, ability to map and access provider networks, familiarity with organizational structures and points of contact	Building contact lists or a map of actors, communicating regularly with staff and officials, and deploying knowledge

). Responses were analyzed in the order they were given and, when needed, reordered to chronologically organize experiences. A chronological approach was employed to better identify potential critical junctures or compounding advantages and disadvantages [38]. We also considered whether knowledge claims were told only within broader narratives or when associated with particular social roles [39,40,41].

3. Results

3.1. Initial Rights Seeking: High Relational Knowledge, Varied Substantive Knowledge

The parents in this study possessed high levels of relational knowledge when they began to think their children might be neurodivergent and when they initially pursued educational and healthcare services. Parents knew their children’s teachers and pediatricians. Some parents told these resource providers that they believe that their child might be neurodivergent, while some parents mentioned that their child’s teachers were the first to alert parents. While their experiences with these resource providers varied, parents knew initially who could help them begin the process of successfully accessing healthcare, educational resources, and diagnostic services. Parents not only discussed their knowledge of and experience with these providers but, without prompting, identified them by name.

The personnel that parents knew were the same as those generally recommended in informational materials distributed by area healthcare networks and school districts. While they are not part of the justice system, they are responsible for effectuating people’s legal entitlements and upholding a panoply of civil rights.

Knowing who to go to was never enough. Families often faced long delays. For example, it was common for families to wait a year or more for an appointment for diagnostic services, which can be necessary for determining eligibility for some resources and accommodations. These differences in delayed justice are not a function of differences in relational knowledge, but broader economic and political forces.

The changing medical logic around neurodivergence, innovations in resources, changes in school programs, and evolving education jargon all complicated parents’ ability to translate their lay knowledge into expertise. This process is important, as many parents said, because even attentive resource providers were often flummoxed, if not dismissive of parents’ perspectives.

The changing fields meant that many experts were behind the most recent science, standards, and laws. Parents frequently found that healthcare providers and schools regularly denied services that parents deemed crucial. Claims assessors would deny coverage for items that doctors and parents had mutually agreed upon. School districts would claim resource shortages. In some instances, these denials were fraudulent attempts by enterprises to retain funds and resources. Parents recounted stories of talking on the phone with their insurance provider and being unable to receive any further explanation beyond someone saying the requested resource was somehow “elective” or “non-essential”.

One mom mentioned that her daughter’s elementary school said that they did not have the funds for a given resource. However, when the mom found out that the state of Arizona provided the school with an annual supplement to cover her daughter’s individual needs, she raised the issue. “I asked them, ‘Where’s the money set aside for my daughter?’” she said. She then recounted that the school personnel grimaced, knowing that they had been found out, and they responded, “Oh, yeah”.

Having relational knowledge of slothful, duplicitous, or outdated actors further cheapened the relative importance of relational knowledge. One mom, speaking about one of her daughters, recounted, “They utilized hand over hand instead of hand under hand, denied use of AAC & kept it put up or let other students & staff play with it”. Hand-under-hand is the recommended guidance technique because it promotes independence, better motor skills, and authenticity. The AAC here refers to a tablet or alternative tool a person can use to communicate, including text-to-voice and letter and image boards for point communication. Her experience encapsulates the general feeling of respondents that it is too hard for families to get what their neurodivergent children need, and a lack of oversight into these systems cheapens the quality of what parents are able to acquire.

Even under ideal circumstances, with abundant resources and vested parties, securing the proper resources to which the children were legally entitled is subject to trial and error. As such, differences in substantive knowledge explain far more of the variance in outcomes at this early stage for parents with neurodivergent children. The science and technologies surrounding disability, and neurodivergence in particular, are rapidly changing. The process of finding the right resources for children is often marked by considerable trial and error. Unless it is out of professional necessity, most people are not fluent in the latest advances in the diagnostic criteria, therapies, technologies, and resources for one form of neurodivergence, let alone all forms, until circumstances in one’s life make that knowledge pertinent.

Differences in substantive knowledge helped explain disparities in families’ initial efforts to secure effective resources for which they were legally entitled. This is the opposite of what the extant A2J research has found. We now turn to the later stages of families’ rights journeys to see if this case complicates rather than refutes A2J’s core assumptions.

3.2. Contesting for Rights: The Rising Importance of Relational Knowledge

Families inevitably faced material roadblocks. Insurance companies would deny critical supports, schools and state agencies would have paltry caps on initial resource allocations, and the reasonableness of a child’s accommodations was frequently disputed.

Importantly, the personnel who were responsible for overriding these limits were almost never the same as those who made the initial denials. Families, even when they knew their legal entitlements, would routinely receive lines like “this is the standard,” but without direction as to how they could appeal or work with schools, insurance providers, or state agencies to receive more resources when they thought it was necessary.

Denials and roadblocks had major consequences for many of the families in this study. Families moved jurisdictions and school districts, and paid thousands of dollars out of pocket for equipment, therapy appointments, and caregivers. But so too did temporary delays. Parents recounted having to wait a year for a mandated second opinion or how a misapplied cap on occupational therapy appointments resulted in a child regressing in their motor skill development.

At this point in families’ journeys, they retained their relational knowledge, having not forgotten who their resource providers were. They also accrued substantive knowledge to varying degrees. Substantive knowledge gaps were narrowed through online resources, parental support groups, information gleaned from resource providers, and through trial and error. Not only had they become more knowledgeable, but also more expert (see [42]). Parents learned medical and educational jargon, as well as the heuristics that resource providers used to understand children and their needs.

Families found little recourse when they were told they had exhausted their resources or when they asked for resources that were denied. In short, it was not clear whether these denials were appealable and, if so, to whom parents should have appealed to remedy the situation. The doctors and teachers that they knew well were not in charge of insurance claims or resource determinations. Parents, on multiple occasions, stated their frustration that they knew the denial of services was at odds with a law or policy, but did not know how to resolve the issue within the resource-providing institutions or whether it was right to raise their case through legal proceedings. As one mom said, it was an insipid mixture of “bureaucratic red tape” and staff who wished to reduce their workload. Routine resistance, like “the school psychologist looked me in the face and told me that ‘if I had it my way, he wouldn’t even have an IEP, ’” resulted in the mom deciding to pull her autistic child with ADHD from public school into homeschool, which then affected the family’s socioeconomic stability.

Because school resources are determined, in part, based on “reasonableness,” which includes factoring in a school district’s financial and staffing limitations, several parents believed that the limits they faced were prima facie uncontestable. In most instances, not knowing the pathways for accessing resources was sufficient to render their plight non-justiciable. It is why most parents responded to “What do you wish you knew prior to your child’s education journey?” with variants of “I wish I had known my rights to an advocate” and “not to trust the school” because it “is only looking out for its budget”.

Those who were able to challenge resource limitations did so after one of two events. Either a resource provider or allocator explained to whom they could appeal, which was more common in the context of health insurance than with school districts, or through the families’ social network. For the latter, families learned from other parents who had effectively lodged appeals or complaints themselves, or they learned from other parents about legal and non-legal advocates who specialized in these situations.

In short, parents needed relational knowledge, who to appeal to and the processes for doing so. But, critically, this is a qualitatively different kind of relational knowledge than the otherwise high levels of relational knowledge that they already possessed, knowledge of those chiefly responsible for doling out resources.

The diffuse administration of rights and resources further complicated some families’ ability to seek redress. Families reported that the distinction between what medical insurance, the state, and the school would provide was opaque. This sometimes allowed families to combine allotments to reach a satisfactory whole, such as drawing on school, insurance, and state programs to ensure therapies lasted the entire year or to increase their frequency. However, it also created gaps that were more difficult to resolve. Parents frequently reported being told to reach out to another resource-providing system when they were declined for what they believed were reasonable and routine requests. This ‘blame game’ gave the appearance that if any organization could provide a resource, then none were uniquely liable for failing to do so.

Consistent with the Access to Justice literature, families noted the importance of having people who could help them seek redress. Parental support groups were a frequent site for sharing not only substantive information about medicine, education, and the law, but also for parents to learn from other parents how to appeal for more resources, how the processes work, what decision-makers are looking for, and other key navigation details.

4. Discussion

The findings in this paper suggest that it is worthwhile to revisit the concepts of relational and substantive knowledge and to consider the fruitfulness of access to justice before issues reach courts. The existing A2J research has held that relational knowledge explains disparities in access to justice. This study affirms that relational knowledge matters for parties seeking legal remedies. It goes further by showing that relational knowledge has explanatory power in contexts when legal pathways are not static and clear. Critically, this study found that disparities in substantive knowledge helped explain disparities in families’ initial attempts to exercise their rights and receive their legal entitlements. As such, this study adds dynamism to an otherwise static conceptual binary.

A2J research has led to important legal reforms aimed at mitigating relational knowledge gaps [10,11,12,13,14,15,16]. However, given the importance of substantive knowledge, A2J research must expand its scope to include cases that never reach trial, which remain the vast majority [17]. It should consider how ‘know your rights’ programs and other substantive knowledge-sharing efforts can be improved and how these efforts affect later courtroom outcomes. Delgado’s work on how children of undocumented immigrants serve as legal information brokers for their parents demonstrates the merits of such inquiry [43,44].

There are some natural limitations to this study. As it was a convenience sample, it can be said that substantive knowledge mattered for some people at the beginning of their journey accessing justice, but future representative sampling would help assess the findings’ transferability, if this is true for most or all families with neurodivergent children. This would also allow for a value intersectional analysis. It remains to be seen if knowledge gaps, which are a main driver of inequality in the courtroom, are a primary or minor explanans relative to other social forces commonly used to explain or predict various forms of inequality. Lifecourse studies, weighted samples, and other approaches could help address this important question.

5. Conclusions

Resourcing neurodivergent children with what they need to thrive is essential to promoting human rights. This paper hardens the belief that lawyers alone are insufficient for advancing human rights. The United States, where this study took place, has “more lawyers per capita and the world’s most profitable legal services industry. Yet we rank 101 out of 114 countries—behind Afghanistan—in ordinary citizens’ ability to access and afford legal services” [45]. The education and healthcare contexts of this study suggest that it is worthwhile for A2J to expand its notion of justice beyond court proceedings and remedies. This could be aided by deeper engagements with the literature on the shadow of the law [46], legal consciousness [47,48], legal cynicism [49], legal estrangement [50], or latent illegality [34,51]. Distinguishing among different kinds of civil disputes, parties, and claims could also help identify influential antecedent conditions.

Most importantly, this study suggests that efforts to improve access to justice will necessarily be limited and reactive if they fail to address the structural forces that compel people to engage justice systems. Incorporating such insights would promote equal access to rather than simply equal access in systems of justice.