Beyond Compliance: What Accessibility Still Misses for Disabled People and Their Families
Elizabeth Cotillo
Families of disabled children continue to face barriers that remain largely invisible to the public, even as conversations about inclusion grow more common. In many cases ADA compliance is treated as the end point of accessibility. Yet according to researchers and parents Dr. Jill Locke and Dr. Lauren Clark, the gap between what is technically accessible and what families actually experience remains wide.
I spoke with both education scholar Dr. Jill Locke, whose research examines evidence-based supports for autistic youth in public schools and who is also the parent of a three-year-old autistic son, and nursing scholar Dr. Lauren Clark, whose work focuses on disability health equity and who is the parent of an adult son with an intellectual disability. Their insights reveal that true access depends not only on buildings and policies but also on how people are welcomed, supported, and understood.
When Clark reflected on how she began her work, she explained that her research started by examining what she called the household-level care work that keeps people alive. She described it as the constant labor families take on to help disabled children navigate school, health systems, and community programs. This was work she saw institutions benefit from but rarely acknowledge. Her comments set the stage for how families end up filling the gaps left by systems that claim to be accessible.
Locke shared a similar observation about the limits of compliance. “We talk a lot about accessibility,” she told me, “but most systems only aim for the bare minimum. That is not the same as actually supporting kids.” She explained that schools often meet technical requirements but still fall short in practice. “Schools check boxes,” she said, “but the real question is whether families get what they need.” Most of the time the answer is no. Both researchers grounded these points in everyday examples. Clark described a project she worked on involving a county recreation center where adults with Down syndrome used a gym that appeared fully accessible by ADA standards. The building had wide doors and a spacious equipment layout, yet most users struggled because they did not know how to use the machines or navigate the unspoken social expectations of the space. “Physical access was there,” she said, “but social access was missing.” To Clark, accessibility is not just about places but also about processes, the steps, expectations, and social norms that determine whether someone can meaningfully participate once they are inside the building.
Schools face similar challenges. Locke explained that teachers and paraeducators are rarely offered adequate training in autism or evidence-based practices. They are expected to support autistic students without preparation, not because they lack compassion, but because “they often do not know what they do not know,” she said. When resources are stretched and time is limited, students who do not outwardly appear to struggle are often overlooked. Clark added that even our cultural symbol of disability, the wheelchair icon, reinforces a narrow idea of who accessibility is for. “We treat accessibility as if it is a single category,” she explained, “when every disability requires its own forms of sensory, social, and cognitive support.” The systemic challenges families face extend beyond schools. Locke described the logistical obstacles that come with obtaining services for a child. Every appointment brings pages of English-only forms, and families may receive only a few days’ notice. Evaluations can last hours. For many families, taking time off work to attend these appointments can threaten their employment. Transportation adds another hurdle, especially for families who do not drive. “Even with resources, the process is exhausting,” she said.
Clark pointed out that cultural assumptions also restrict access to opportunities. Many disabled students, including those with physical disabilities, assume they cannot enter fields like nursing because they believe they must lift, walk, or stand for long periods. In reality, many nursing roles do not require this. Students internalize these assumptions before they even attempt to pursue the field. Locke said that one of the biggest issues families face is simply trying to understand what high-quality services look like. Providers may advertise their programs as evidence-based even if they are not. “Families are not reading scientific literature,” she explained. They want to trust what they are told because they are trying to support their child. She emphasized that families ask for guidance more than anything. They want to know how to help their children at school, at home, and in community settings. They want quality of life, not just behavior plans. Clark shared that emotional and cultural support often comes more reliably from disability communities than from formal systems. Peer mentors, parent groups, and disability networks offer acceptance and practical advice that families cannot always find in professional settings. “Accommodations may provide a baseline,” she said, “but community is what brings quality of life.”
As our conversation turned to what meaningful access looks like, Locke distinguished between inclusion and belonging. Inclusion can mean being physically present in a classroom, she said, even if the student is not participating. Belonging means being woven into the fabric of the school. She described her son’s preschool, where staff prepared for him before he arrived, created sensory supports, and made sure he learned the names of his peers. “It was not complicated or expensive,” she said. “It was thoughtful.”
Clark explained that this kind of belonging reflects a human-centered approach to accessibility. “Widening a doorway is easy,” she told me. “Creating a space where disabled people understand expectations, feel safe, and feel welcomed is the real work.” This requires trained educators, collaboration with families, and supports that focus on participation rather than placement.
Despite the many challenges, Locke and Clark both expressed optimism about the direction of disability inclusion. Locke noted that awareness has changed dramatically in recent years. “People know autistic people,” she said. “They work with them, are friends with them, and even marry them. It is no longer a taboo label. That gives me hope.”
Clark pointed to progress made by advocates across the state. Disability Rights California has advanced major legal victories, she said, by holding institutions accountable for equitable access and addressing abuse in care settings. Every legal victory moves us toward a world where disabled people are protected, supported, and valued.
Together, Locke and Clark show that compliance may open the door, but belonging is what makes a space truly accessible. Their insights highlight the need for systems that recognize the daily realities that disabled people and their families navigate, and that build both accessible places and accessible processes. As more researchers and advocates push for these deeper forms of inclusion, the path toward meaningful access becomes clearer.
