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Monday, July 3, 2023

Reports of Discrimination in Health Care

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families
People with autism and other disabilities have faced discrimination in organ transplants.  During the pandemic, they faced discrimination in the availability of ventilators.  And along with other people with disabilities, they reportedly encounter discrimination in health care more generally.

Stefanie G. Ames and colleagues have an article at Pediatrics titled "Perceived Disability-Based Discrimination in Health Care for Children With Medical Complexity."
A commentary has been published: Discriminating Against Children With Medical Complexity
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Disability-based discrimination in health care can lead to low quality of care, limited access to care, and negative health consequences. Yet, little is known regarding the experiences of disability-based discrimination in health care for children with medical complexity and disability. An understanding of disability-based discrimination in pediatrics is needed to drive change and improve care.

We conducted in-depth, semistructured interviews with caregivers of children with medical complexity and disability. Participants were purposefully recruited through national advocacy and research networks. Interviews were conducted via video conferencing, recorded, and transcribed. Data collection and analysis occurred iteratively. An inductive thematic analysis approach with constant comparison methods was used to identify themes that form a conceptual framework of disability-based discrimination in health care.

Thirty participants from diverse backgrounds were interviewed. Six themes emerged, forming a conceptual framework of disability-based discrimination in health care. Three themes described drivers of discrimination: lack of clinician knowledge, clinician apathy, and clinician assumptions. Three themes described manifestations of discrimination: limited accessibility to care, substandard care, and dehumanization.

Children with medical complexity may face disability-based discrimination in health care. Themes describing the drivers and manifestations of discrimination offer a conceptual framework of disability-based discrimination. Understanding the drivers and acknowledging perceived manifestations can provide insight into improving patient care for children with disabilities.


Although not yet studied well in pediatric health care, clinicians’ limited self-efficacy in caring for patients with disability may perpetuate disparities in health care accessibility and contribute to poor health outcomes.20–22

Exemplar quotation:

And then she said, “But here’s the thing.” She’s like, “Honestly, we don’t want to work with autistic children.” And she said, “They’re just really hard.” And she said, “So, you know, we just are really hopeful that someone in the community will want to work with him, but we’re not it. We are going to focus on working with children who are not autistic.” 


20 Roux  AM, Rast JE,Shea LL. Family perceptions of health care access for autistic young adults receiving disability services. Pediatrics.2022;149(Suppl 4):e2020049437SGoogle Scholar  Crossref PubMed