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

Authors

Elizabeth H. Morgan, California State University Sacramento and University of California Davis CEDD at the MIND InstituteFollow
Benita D. Shaw, University of California Davis CEDD at the MIND InstituteFollow
Ida Winters, University of Wisconsin-Madison Waisman CenterFollow
Chiffon King, University of Wisconsin-Madison Waisman CenterFollow
Jazmin Burns, University of California Davis CEDD at the MIND Institute and Empower Behavioral HealthFollow
Aubyn Stahmer, University of California Davis CEDD at the MIND InstituteFollow
Gail Chodron, University of Wisconsin-Madison Waisman CenterFollow

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.

Plain Language Summary

Racism and ableism cause many negative outcomes for Black children and their families in health care and education. Many Black families wait a long time to get a diagnosis for their child with a developmental disability. Black families also get low-quality care. In this paper, we describe how two UCEDDs partnered with Black parents to support advocacy and peer networking for Black families. Three co-authors who are Black parents describe our negative experiences with schools and health care. We also talk about our lived experience partnering with UCEDDs. There are several steps we need to take to make sure Black families get quality care. One thing we need to do is listen to Black families describe their lived experience. We should support Black families to raise their voices, and we should do more qualitative research about family experiences. It is also important for providers to change how they think and act. Providers need to understand how their biases impact Black families. UCEDDs and Black families can partner to help make these changes happen.

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.

Recommended Citation

Morgan, Elizabeth H.; Shaw, Benita D.; Winters, Ida; King, Chiffon; Burns, Jazmin; Stahmer, Aubyn; and Chodron, Gail (2023) "Paths to Equity: Parents in partnership with UCEDDs fostering Black family advocacy for children on the autism spectrum," Developmental Disabilities Network Journal: Vol. 3: Iss. 1, Article 5.
DOI: 10.59620/2694-1104.1060
Available at: https://digitalcommons.usu.edu/ddnj/vol3/iss1/5