Paths to Equity: Parents in partnership with UCEDDs fostering Black family advocacy for children on the autism spectrum

Abstract

Racism and ableism have doubly affected Black families of children with developmental disabilities in their interactions with disability systems of supports and services (e.g., early intervention, mental health, education, medical systems). On average, Black autistic children are diagnosed three years later and are up to three times more likely to be misdiagnosed than their non-Hispanic White peers. Qualitative research provides evidence that systemic oppression, often attributed to intersectionality, can cause circumstances where Black disabled youth are doubly marginalized by policy and practice that perpetuates inequality. School discipline policies that criminalize Black students and inadequate medical assessments that improperly support Black children with developmental and mental health disabilities are examples of systemic oppressions. However, there is evidence to support that attitudes and biases that providers hold about Black children, and their families hold a part in the blame as well. This paper will explore the efforts of two University Centers for Excellence in Developmental Disabilities (UCEDDs) to address disparities in access to diagnostic and higher quality services for Black neurodiverse children in Northern California and Wisconsin. This paper will: (1) Describe programs and projects within each center that support advocacy and peer networking for Black families; (2) Provide first-person accounts from  family members that document the UCEDDs’ impact on their respective advocacy journeys; (3) Delineate how each UCEDD partnered with Black families and community stakeholders to develop and plan programs that meet the unique interests and needs of the groups of Black families of autistic children within the cultural contexts of the communities in which they live; (4) Discuss the processes that each UCEDD underwent to evaluate the efficacy of their programs to ensure that they were uplifting principles of cultural and linguistic competence such as community and family engagement;  and (5) Offer recommendations to improve current practice and create culturally competent and family-centered supports and services for disability systems and providers across the DD Network and beyond

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