Postsecondary Planning Perspectives of Black Parents of Young Adults With High-Incidence Disabilities

Challenges Faced by Black Students With HID in Postsecondary Education Settings

Black students with HID surmount multifaceted challenges and multiple oppressions related to racism and ableism in preK–12 institutions, yet the transition to PSIs is not without its own hurdles. These students are more likely to enroll in a 2-year PSI, and if they enroll at a 4-year PSI, they are less likely to graduate (Gatlin & Wilson, 2016; Newman et al., 2011). Students with HID often lack the academic background to earn passing grades and sustain consistent study skills and organizational skills once they attend a 2-year or 4-year PSI (Lightfoot et al., 2018; Yung-Chen et al., 2019). Another matter is the knowledge gap due to differences in legislation concerning disability rights and accommodations at the secondary school and PSI levels (Americans With Disabilities Act, 2004; Americans With Disabilities Act Amendments Act, 2008; IDEA, 2004). Pejorative phrases such as “documentation divide” and “transition cliff” describe the disconnect that students with disabilities and their families face once the student leaves high school to move on to college or work (Garrison-Wade, 2012; Gregg, 2007). Although some educators may communicate to students with HID that there is a significant difference with how the student will navigate life with their disability after high school, many students and parents are not well prepared to deal with the lack of information, structure, and accountability that they face in PSI settings as compared with high school. Students and families depend on the services of an IEP case manager or teacher in preK–12 to distribute information to teachers about accommodations and modifications. However, due to differences in disability legislation between preK–12 and PSIs, the student at the PSI level is responsible for registering with the disability support service office at the PSI and communicating with each course's instructor on needed services every semester. This knowledge gap persists, as many students with HID do not register with PSI disability support services (Newman et al., 2011; Yung-Chen et al., 2019).

A related equity issue is that PSI disability support offices require updated documentation (psychological or medical evaluations) before the issuance of accommodations. Obtaining new psychological and/or medical reports incurs a financial burden on students with disabilities and their families (Keenan et al., 2019). Additionally, Black students with HID tend to underuse disability resource centers at PSIs and request academic help later in the semester, when it is too late to make much of a difference. (Harris et al., 2016; Lightfoot et al., 2018; Yung-Chen et al., 2019).

For Black students with HID who attend a White institution (PWI), the experiences of racial stress and microaggressions are more frequent than if they were to attend a historically Black college or university (HBCU; Harper, 2013; Sue, 2010). Operating in a constant state of hypervigilance against occurrences of verbal and nonverbal discrimination related to racism and/or ableism consumes much of the executive functioning capabilities of Black students with HID (Ozier et al., 2019). This level of cognitive and emotional hypervigilance leads to increased “anxiety and results in academic underperformance” (Harper, 2013, p. 191).

To bypass hurdles implicit in the transition from high school to enrollment at a PSI or another post–high school goal, Black students with HID and their families deserve high-quality, culturally responsive transition planning during the middle and secondary school years (Achola, 2019; Barrio, 2022; Suk, Sinclair, et al., 2020). A crucial first step for culturally responsive transition planning is for the educator to examine their own place in the world as influenced by social and cultural variables and to identify the ways in which social and cultural identities influence values, worldviews, and communication and behavior with others, particularly those with other social and cultural identities (Baumgartner et al., 2015). To foster self-reflection, Suk and colleagues provide a bank of self-explorative questions in the areas of “personal culture, communicating with students and families, and transition planning” (Suk, Sinclair, et al., 2020b, p. 124; Suk, Martin, et al., 2020). Growing in self-knowledge of oneself as a social and cultural being with the goal of minimizing and eliminating bias toward others is a lifelong endeavor (Sue, 2010).

A second step to promote culturally responsive transition planning involves viewing parents, guardians, or caregivers of students from culturally and linguistically diverse (CLD) backgrounds as equal partners in the students' education and transition-planning process (Barrio, 2022). Parent engagement is an essential factor for academic and post–high school success for Black students with HID (Gatlin & Wilson, 2016; Harris et al., 2016). Relatedly, educators ought to view Black students with HID and their families as possessing strengths and assets. Achola (2019) describes this approach as “an asset-based perspective” and advocates for educators to craft a transition plan “around the students’ area of growth . . . [and] highlight how students can benefit from the variety of resources, talents, strengths, and opportunities available within their families and communities” (p. 190). Identifying resources within a CLD community or “diversity-informed resource mapping” is an intentional process of making visible those institutions, businesses, and advocacy groups as potential assets to meet the needs of CLD students and families (Achola, 2019, p. 191). For Black students with HID and their families, example community resources could be HBCUs, faith institutions, mentoring and scholarship initiatives by Black sorority and fraternity groups, and professional associations.

The third step to culturally responsive transition planning is the implementation of culturally responsive actions. Condensed, they consist of the educator (a) encouraging student engagement in cultural affirming activities inside and outside of school, (b) being a social justice model-leader, (c) being a linker or connector of students to community organizations for career development and leadership activities, and (d) fostering trust with families (Suk, Sinclair, et al., 2020, p.125). While measurable postsecondary transition goals in a student's IEP are standard practice for all students, Suk and colleagues advocate for the infusion of culturally competent postsecondary transition goals and coordinated activities, in collaboration with students and families of CLD backgrounds (2020b).

Black Parent Perceptions on PSP for Youth With Disabilities

Regarding transition planning or PSP experiences, Black parents noted their perceptions of school systems and IEP teams waiting too late to begin beneficial transition planning, such as during the child's senior year of high school, which diverges from best-practice literature that advises to start transition planning earlier in high school (Hetherington et al., 2010; Pleet-Odle et al., 2016). A body of court rulings against school districts describes unacceptable, inadequate transition plans often occur as superficial, nonindividualized plans, lacking goals and relevant curriculum and transition assessments (Prince et al., 2014). This is the opposite of “adequate transition planning,” which is specific, student and family centered, outcomes driven, and a continuous process as well as being culturally responsive (Suk, Sinclair, et al., 2020). Black parents also reported concerns with transition planning attributed to low expectations for their child by the school staff, racist behavior toward their child and the family by school staff, late planning, and withholding of relevant information (Hirano et al., 2018).

Participants

Criteria for the inclusion of participants in this study included that (a) the participant self-identified as a Black or African American parent or guardian; (b) the participant subscribed to having a Black young adult child who had an IEP in high school; (c) the participant's young adult child had a disability label in one or more of the following HID categories: EBD, OHI, MID, SLD, and SLI; (d) the participant's young adult child attended a public school in the United States; (e) the participant's young adult child graduated or left high school between 2017 and 2021; and (f) the participant was willing to share their experience with the researcher. The first author conducted purposive and snowball sampling over several months through distribution of recruitment flyers through methods including (a) direct and follow-up emails to personal and professional contacts across the United States, (b) postings to social media groups affiliated with advocacy for youth and adults with disabilities, and (c) direct communication to higher education entities (disability support service offices at PWIs and HBCUs; comprehensive transition postsecondary programs), nonprofit organizations, special education law firms, vocation-oriented businesses, Black churches, and Black-owned businesses.

Fourteen parents (13 mothers and one father) of 15 children met the inclusion criteria and participated in the study. To ensure confidentiality, participants chose pseudonyms for themselves and their children. Parents resided in the Midwest (n  =  3) and in the Southeast (n  =  11) (see Table 1 for all demographics). Of the 15 children whose parents participated in the study, one was female (n  =  1), and the rest were male (n  =  14). Thirteen of the children matriculated with a high school diploma, one received an occupational certificate, and one graduated with an IEP diploma. The children had more than one disability eligibility; the most commonly occurring HID categories were SLD (n  =  8), mild intellectual disability (n  =  8), and SLI (n  =  7). Each participant received an incentive, delivered by certified mail, upon completion of the study.

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Table 1.

Description of Participants Based on Self-Report.

Participant	Racial/ethnic identity	Gender Identity	State	Education level	Marital status	Gender of child	Eligibility labels	Completed High School
Johnetta	Black/African American	Female	Georgia	Master’s (2)	Divorced	Male	EBD, MID, SLD, ASD	2020
Barbara	African American	Female	Georgia	Specialist’s	Married	Female	EBD, MID, ASD	2020
Rosalyn	African American	Female	Georgia	Some college	Single	Male	OHI (ADHD), SLD	2021
Cassie	Black	Female	Georgia	Master’s	Married	Male	MID, SLI	2019
Tamara	Black	Female	Georgia	Bachelor’s	Married	Male	EBD, SLD	2019
Stacey	African American	Female	Georgia	Not provided	Single	Male	OHI (ADHD), ASD	2021
Louise	African American	Female	Michigan	Bachelor’s	Married	Male	SLD	2021
Tara	African American	Female	South Carolina	Bachelor’s	Divorced	Male	MID, SLD, SLI, ASD	2021
Michelle	Black/African American	Female	Michigan	Associate’s	Married	Male	OHI (ADHD), SLI	2019
Edith	Black	Female	Michigan	Some college	Married	Male	EBD	2020
Cookie	Black	Female	Georgia	Master’s	Married	Male	MID, ASD	2019
Paula	Black/African American	Female	Georgia	Some college	Married	Male (2)	MID, SLD, SLI, ASD; OHI, SLI	2020; 2021
Kevin	Black/African American	Male	Georgia	Master’s	Married	Male	MID, OHI, SLD, SLI	2020
Denise	Black/African American	Female	Georgia	Bachelor’s	Married	Male	MID, OHI, SLD, SLI	2020

Note. Pseudonyms are used for all participants. EBD  =  emotional and behavioral disorders; MID  =  mild intellectual disability; OHI  =  other health impaired; SLD = specific learning disability; SLI  =  speech and language impairment; ADHD  =  attention deficit hyperactivity disorder; ASD  =  autism spectrum disorder.

Researcher as Instrument

The fundamental means of measuring qualitative phenomenon is through the presence of the researcher as an instrument (Hays & Singh, 2012). As a middle-class, White female educator-researcher without a disability, the first author acknowledges that this study with Black parent participants resided within social and racial dynamics (Best, 2003). The second and third authors are White female faculty members who have experience working with diverse populations of students. The research team consisted of the first author and two counselor education doctoral students, all of whom completed qualitative research coursework and possess experience working with students with disabilities and their families in the public school setting. One research team member was a Black female, and the other two members were White females. By utilizing a research team, the data analysis process became transparent to others beyond the first author in the attempt to reduce research bias and ensure integrity.

Procedure

Upon approval from the university's institutional review board, recruitment efforts began. After interested participants completed a brief telephone screening to ensure parents met the study's inclusion criteria, they received an informed-consent document and a demographic questionnaire via email. Participants scheduled an interview date and time convenient for them. The first author reviewed informed-consent information with each participant before beginning the scheduled interview and reminded participants of their voluntary participation.

The semistructured interview protocol contained 27 open-ended questions. A review of educational research literature informed the development of the interview questions (Annamma et al., 2018; Bianco et al., 2009; Hetherington et al., 2010). Interview questions were field-tested in 2019, refined, and field-tested again in 2021. (Annamma et al., 2018; Bianco et al., 2009; Hetherington et al., 2010; Moustakas, 1994). Interview questions informed by DisCrit involved wording conducive to the participants’ envisioning of ideal scenarios in the absence of systemic barriers (Annamma et al., 2018).

Interviews with participants took place over the Zoom conferencing platform. The interview protocol for each of the two interview sessions contained 12 to 14 questions, and the duration of each was about 45 to 90 min. Participants provided permission to record over Zoom and via an audio-recording device at the beginning of the interview session(s). Participants received interview transcripts (downloaded from Zoom) to review their responses and to indicate if they wanted to retract or edit any of their answers. The first author composed ongoing memos, bracketed assumptions, and used reflexive journaling for data summaries and data analysis (Hays & Singh, 2012). To promote transparency and aid future researchers, associated materials related to the audit trail are available online on the Open Science Framework (OSF) website (https://osf.io/).

Data Analysis

Phenomenological data collection and analysis of items are simultaneous, ongoing processes (Creswell & Creswell, 2018). The research team engaged in multiple rounds of listening to the audio of each interview session and subsequent note taking and reflexive journaling. After this, the first author enacted horizontalization of the data and additional phenomenological reduction approaches (Moustakas, 1994). The goal of phenomenological reduction approaches is to parse out the researcher's assumptions on a subject through bracketing or de-emphasizing such assumptions to highlight the participants’ experiences with the target phenomenon (Moustakas, 1994). The first author and research team read transcripts for two participants and practiced coding the transcripts both together and independently. The research team used descriptive, in vivo, and process coding (Saldaña, 2016). Once the research team reached a consensus on the presence of similar codes across types, we grouped codes by group category (Saldaña, 2016). The research team attempted to highlight those participants’ statements and quotes indicative of capturing the essence of their experience with the phenomenon under study. The first author converted meaning units into categories, and from there, themes emerged. Later, the first author reread the same interview transcription and developed themes from clustered meaning units (Moustakas, 1994). The first author arranged themes into textural representations of the experience, then into structural representations of the experiences, and then transferred those textural and structural descriptions into essences or “meanings and essences of the phenomenon” (Moustakas, 1994, p. 119).

Through consultation with research team members, the first author noted the participant experiences with the phenomenon as they emerged from the data. Moreover, the first author emailed a summary of the research with themes, findings, and examples to the 14 participants to query if the themes resonated with their own experiences with the PSP process. Three participants confirmed by email that the findings of the research mirrored their own experiences. The remaining 11 participants did not provide a response to the summary of research findings.

Trustworthiness

The first author established six measures of trustworthiness to ensure the authenticity of data in this study. First, reflexive journaling occurred upon completion of each interview and after listening to and/or reading interview transcripts. Second, member checking took place during the interviews (verbal probes) and after the interviews. The first author emailed participants to clarify answers and shared interview transcripts and themes with them to confirm the accuracy of data. Third, triangulation contributed to the credibility of the study: (a) use of the research team for data analyses (multiple investigators) and (b) participant Barbara's contribution of an “About Me” booklet about her daughter, which she shared annually with educators as an advocacy tool (multiple data sources). Fourth, the authors employed negative case information or counternarrative, as reported in the instance of participant Tamara in the Findings section regarding the lack of social support. Fifth, the first author spent extended time with the data (interviews spanning 4 months). Finally, rich, thick descriptions occurred through participants’ accounts of the phenomenon of PSP in the form of direct quotes and affective statements in the Findings section (Creswell & Creswell, 2018; Hays & Singh, 2012).

Experiencing Invisibility by Lack of Inclusive PSP and Options

Most participants expressed how the special education teachers at the high school(s) their young adult children with HID attended were most concerned about academics and neglected adequate PSP for their child. In these cases, the school's sole goal was for the student to earn a high school diploma or certificate of attendance. The participants perceived their child was just being moved along to exit high school. Participants reported an absence of PSP support from their child's school for their child with HID. This was particularly evident for those parents who had the vantage point of having gone through a detailed, visible PSP process for their older child without a disability.

Stacy noticed a pattern concerning the absence of PSP support with the way her son's school system ignored not only her son with HID but also other minoritized male students with disabilities who were her former students in the same school system.

Students labeled with a disability, most of the time, it's minority males, get left behind in the postsecondary review. Educators do not actually prepare them for going into the workforce, or even giving them options. It's across the board, African American males as well as Hispanic males. I think the whole public education system looks at academics only and are tunnel vision on this, and the system is only worried about that top 10%. If you have a disability, you’re going to be bottom barrel, and if you’re of a minority group, you’re definitely going to struggle, if you don’t have anyone to advocate for you.

Feeling Marginalized Due to Collusive Forces of Ableism and Racism

Participants disclosed accounts of social marginalization related to their or their child's experience with ableism, racism, or both ableism and racism during high school. The participants expressed fear and anxiety for their Black young adult child's safety, a strong vigilance to take the initiative for their young adult child's safety, and the unique mindset of helping their child with HID navigate their postsecondary future in society as a young Black adult with a disability.

Persevering Role of Black Parents Through PSP and Beyond

From their accounts, the participants demonstrated a great amount of investment in their children and their future during the PSP process. The participants expressed the delicate balance of supporting their young adult child with HID while providing the child the mental and physical space to exercise independence. The persevering role of these participants as parents of young adult children with HID exacted a mental, emotional, and physical toll on most of the parents.

Denise's self-doubts about Mike and his PSP process were related to the “trial and error” nature of the journey. Denise realized her son's journey to self-sufficiency and self-advocacy may take time:

I do see and acknowledge some of those little milestones when it comes to self-advocacy . . . something as simple as wanting to work . . . I’ve overheard him talking to a business asking if they work with individuals with disabilities. Although we as parents sometimes question our decisions along the way, looking at those little moments helps me to feel that although we’re slow-moving, and we’re going to get there.

Many of the parents commented on how fortunate they were to be able to help their child and pondered how other Black parents with a child with a disability were able to help their child with PSP with fewer resources, fewer advocacy skills, and less of a social network. Louise summarized what the IEP team told her at the end of John's last IEP meeting:

If we had every mom show up like you have shown up in the last three years, and even in your knowledge, the humility to take what we offer, every child who has been pigeonholed in this box [having a disability label] would be further along, not on the pipeline to prison, or doing a labor job, or not working at all, maybe just on disability, Social Security.

Navigating Inequities Through Social Supports and Other Supports

The participants affirmed receiving invaluable support from their social connections and wider community network. Participants cited essential social support during the PSP years from their spouse, extended family (grandparents, siblings, other family members), friends, disability-allied nonprofit groups, and groups on social media (Facebook) related to empowering parents of youth and adults with disabilities. The exception to the accounts of examples of social support occurred for Tamara, as she did not recall any social support in any form regarding preparing Penny for life after high school. Johnetta, Cookie, and Paula disclosed the stigma they experienced in their respective Black communities due to their perceptions that many in the Black community prefer not to talk about disability. Therefore, Johnetta, Cookie, and Paula, as did many of the other participants, cultivated their own unique circles of social support that provided PSP knowledge specific to their children.

Louise's mentor, Ms. P., and her mentor's nephew, Dr. R., a Black male oncologist with a learning disability, provided instrumental support in helping her “build a village” for her son, John, in his transition to a 4-year PSI. Louise remembered encouraging John: “They’re building a team for you [team of supports at the PSI]. Dr. R. knows people at your college and will help you get connected [with the PSI disability support services office].”

Paula reestablished a friendship with another Special Olympics parent; the two parents will be collaborating to trade job-coaching services for each other's sons due to diminished state vocational job-coaching resources in their communities.

Rosalyn and Cookie reported social media groups for parents of special-needs youth as valuable resources for parents embarking on the PSP process through building knowledge about nuances of learning differences and disabilities, collaboration with like-minded advocate parents, and learning from professionals. Cookie, Michelle, and Louise spoke highly of the vital role their faith communities played in support of their child during and after the PSP years.

Enacting Ongoing Resistance and Advocacy

The participants in this research resisted status quo systems and advocated in unique ways on behalf of their children with HID. Half of the parents in this study disclosed obtaining a special education advocate (free or fee based) and/or a special education attorney during their child's high school years to ensure their child's educational rights were upheld.

Many of the mothers in this study advocated on several occasions for their child’s teachers to simply implement the IEP accommodations in their classes. Tamara described a teacher refusing to offer Penny his entitled IEP accommodations “until I went up there kicking and screaming.” For Tara, advocating for her child and other children with disabilities became a way of life. She reflected, “There were several times when the IEP team tried to reduce some of those services. You just have to constantly be an advocate.” Stacey concurred with this dynamic role of being a parent advocate for the child even while the child is an adult.

Rosalyn and other parents of youth with disabilities formed a disability advocacy group; she recounted the origin of the group.

We were all ticked off at the same school system at the same time. I said, “We need a group!” The school system is about to find out that there is power in these parent groups. Just because my baby graduated does not mean I’ll stop advocating.

Limitations

This study provided findings about Black parents’ perspectives on PSP for their young adult children with HID. The initial limitation was a lack of geographical diversity: The 14 participants were in two southeastern states, Georgia (n  =  10) and South Carolina (n  =  1), and one Midwestern state, Michigan (n  =  3). Although there was one father represented in the study, participants consisted of mothers. The participation of one father participant in the research contributed to the overall findings of the study; however, the distinct imprint of his gender identity on his lived experiences for his child during the PSP process was not explored, a second limitation. Another limitation was the lack of inclusion of other types of parents such as guardians and grandparents.

Recommendations for Research

New research could incorporate a wider array of Black parents, from gender identity (fathers) to parent type (grandparents, kinship caregivers, foster parents, etc.). A related recommendation would be a secondary analysis of the annual special education exit survey data, in the form of using qualitative or mixed-method methodologies. Finally, researchers and school leaders could conduct diversity, equity, and inclusion analysis audits in the CTE programs at local school district, state, and federal levels and explore more equitable solutions to increase enrollment and retention of Black students with HID in CTE programs.

Implications for Practice

This study's findings provide multiple implications for both special education teaching preparation programs and special educators in the field. Special education professionals in higher education and K–12 institutions need professional learning to intentionally interrupt systems of oppression, especially at the intersection of racism and ableism, and such professionals need to do more to esteem and collaborate with Black parents of youth and young adults with HID in preparation for the children's post–high school plans (DeMatthews, 2020; Hirano & Rowe, 2016).

Black parents and families possess a myriad of assets that enhance the PSP process. In this study, such assets included cultivating a social support network of professionals and peers; parents’ unwavering commitment to their child's academic and mental well-being; and PSP success through advocacy, providing emotional support and encouragement during the PSP process and beyond, and engaging in invisible PSP emotional, financial, and physical labor. Strengths-based narratives of Black families in education and the PSP process ought to be more prominent in educator training programs (Aceves & Black, 2022; Love et al., 2021).

Implications for special educator preparation programs include the need to build and reinforce teacher knowledge, skills, and action regarding social justice advocacy and humility toward historically marginalized students and families (Baumgartner et al., 2015). Site supervisor modeling of social justice advocacy for Black students with HID at practicum and internship sites is essential so students see visible examples of how educators can stand in the gap and support Black parents to advocate for their children. Local school special educators, school administrators, and school counselors ought to have elevated expectations for Black students with HID regarding academic coursework and PSP as well as engage in early, culturally responsive transition planning with Black students with HID and their families (Achola, 2019; Baumgartner et al., 2015; Suk, Sinclair, et al., 2020).