Addressing the Scarcity of Holistic Support for Black Families of Youth With Extensive Support Needs

• In Event: Toward Inclusive and Equitable Education: Disrupting Deficit-Based Positioning of Families and Students Labeled With Dis/abilities

Abstract

Objectives

The purpose of this paper is two-fold. First, we illuminate intricately complex yet overlooked support needs experienced by Black families of children with extensive support needs by examining how the processes of economic status, health-related outcomes, and social exclusion are mutually constitutive and develop over time. Second, we learn from the resistance and knowledge of Black families of children with extensive support needs and propose ways schools can model holistic support of Black youth with extensive support needs, and their families.

Theoretical Framework

Our theoretical orientation brings together Disability Critical Race Theory (DisCrit; Annamma et al., 2013) and a socio-spatial dialectic (Soja, 2010) to frame how Black families experience schooling in situated sociopolitical contexts. DisCrit expands our ability to engage data with dominant ideologies in systems that work to hoard resources and opportunities for white families while a socio-spatial ontology foregrounds how these processes have developed over time at the intersection of dis/ability and race.

Method

This paper utilizes data from a larger project that inquiries into the experiences of Black young adults labeled with intellectual disability, and their families, as they transition into adulthood. Interview data from two Black mothers of children with extensive support needs—complex needs in multiple domains—were analyzed using a multi-phase process of unitizing, coding, triangulating, and developing themes.

Data Sources

Data sources for this paper draw from a series of three individual interviews with each of two Black mothers of children with extensive support needs. In total, six in-depth interviews comprise the corpus of data from which this theme is drawn. This allowed for contextualized data that reflected the sociopolitical context of these families and their communities.

Results

Data revealed that Black mothers experienced undue stress when dealing with special education processes and other supports for their children. This included (a) locating quality physical and mental health providers: The specialization of medical providers often rested in their ability to offer quality care without pathologizing communication and behavior as deficient, (b) accessing Medicaid or other affordable insurance and services, and (c), learning about guardianship and its alternatives, such as supported decision making, in a timely manner. Our findings align with research that demonstrates families of children with extensive support needs often hear about critical services and supports from sources outside of the school. Ideas for addressing these barriers and advancing holistic school approaches, particularly for Black families who face intersecting forms of marginalization, will be discussed.

Scholarly Significance

Along with the necessity for Black families of children with extensive support needs to be vigilant regarding the special education placement and instructional decisions surrounding their children’s schooling, they must also resist discrimination within overlapping social systems and locate support. This paper affords consideration into how schools can disrupt complex and intersecting forms of oppression through holistic support that is responsive to the needs of Black families, is connected to community resources, and advocates for social justice through direct advancement of supports, services, and funds for Black families of children with extensive support needs.

Author

• Courtney Wilt, University of Kansas