Diverse Perspectives on Transition to Adulthood Among Families: A Qualitative Exploration

Abstract

Family engagement is an essential aspect of preparing for the transition to adulthood for youth with disabilities. The purpose of this study was threefold: (a) describe the supports historically marginalized families of students with disabilities draw upon, (b) understand family decision-making when engaging with schools and agencies, and (c) determine whether supports provided by a local Parent Training and Information Center (PTI) were perceived as effective for historically marginalized groups of families. The sample comprised 36 parents of children and adolescents with disabilities who participated in focus groups or interviews. A qualitative analysis revealed several interacting influences associated with family decision-making and advocacy as their children transitioned to adulthood. Implications for policy and practice toward addressing family engagement with schools and communities are described.

Keywords

transition family engagement disability community cultural wealth

School-based planning and preparation for life after high school for students with disabilities is a federally mandated process through the Individuals with Disabilities Act (Individuals with Disabilities Education Improvement Act, 2004). By the time students reach age 16, through age-appropriate transition assessments and collaborative planning, their Individualized Education Program (IEP) should include a unique constellation of transition services and instruction designed to facilitate movement toward measurable postschool goals. This plan is critical as it drives the school-based instruction, services, experiences, and supports a student will receive over the next few years to prepare them for life after school. IDEA mandates processes for involving families in the development of the IEP. Although family involvement is not mandated, given what we know about the importance of family involvement for promoting in-school (Newman, 2005) and postschool success (Test et al., 2009) and the particular importance families of youth with disabilities continue to play once their student’s leave high school (Hirano & Rowe, 2016), family participation in the process can be important. Families are a powerful influence in supporting adolescents with disabilities toward adulthood (Haber et al., 2016). Predictors of positive postschool outcomes support this notion, as family involvement has been linked to enhanced employment and postsecondary education outcomes (Mazzotti et al., 2016; Test et al., 2009). Although their roles may shift as their child transitions from high school into adult roles and systems, families often continue to play a critical role depending upon their child’s needs. In line with supporting their adult children to reach their own goals, family support spans decision-making, collaborating, instructing, and advocating for their children (Hirano & Rowe, 2016).

Family involvement during transition planning, unfortunately, is predominantly conceptualized as parent attendance at transition IEP meetings (Miller-Warren, 2016). Such a narrow perspective is problematic for recognizing the contributions families make in supporting their child for adult life, especially given the structural inequities they may be facing (Hirano et al., 2018). Evidence suggests that families, especially those from historically marginalized populations, have little meaningful engagement during formal transition planning meetings (Geenen et al., 2005). These families often report cultural inequities and conflicts associated with formal transition planning procedures and an overall dearth of information about transition planning (Geenen et al., 2005; Hetherington et al., 2010; Landmark et al., 2007).

Even when parents attend meetings, they report feeling their input is devalued by school personnel who either ignore their contributions or arrive at the meeting with a completed IEP (e.g., Sheehey, 2006). In addition to barriers to involvement, historically marginalized families report a lack of relevance of the planning to their student and their family. For example, sometimes family values are not taken into consideration during planning, whereas dominant Western cultural values, such as independent living, drive the transition component of the IEP (Povenmire-Kirk et al., 2010). Other times family context and needs are not taken into account. Many families of English language learners with disabilities experience poverty, yet rarely receive information from schools during transition meetings about financial resources to alleviate the costs of postsecondary education and career development (Trainor, Newman, et al., 2019). In summary, poor transition programming, a lack of communication and access to information, and negative teacher attitudes have led to many families being pushed out of more formalized school-based transition planning (Hirano et al., 2018; Wilt & Morningstar, 2018).

Lens of Community Cultural Wealth

In response to these school-erected barriers, families may attempt to overcome them through various methods. These methods include increasing their knowledge of special education law and/or school systems, increasing advocacy skills, and/or circumnavigating the school system to pursue their own form of transition planning with community connections and resources (Hetherington et al., 2010; Rueda et al., 2005). As the strategies and types of involvement are not valued by the school and exist outside the school-sanctioned forms of involvement, historically marginalized families, “those who are of color, poor, economically distressed, limited English speakers, and/or immigrants” (Mapp & Hong, 2010, p. 346), continue to be described by school personnel as uncaring, uninvolved, and hard to reach. Disrupting this narrative is critical to improving school-family collaborations. One way to do this is by turning to frameworks that emphasize the strength and diversity of historically marginalized families. Community cultural wealth (Yosso, 2005) is an intersectional and asset-based framework for centering discourses and practices traditionally left out of dominant narratives (DeNicolo et al., 2015).

Community cultural wealth comprises six forms of cultural capital students and families possess and bring with them to interactions with schools (Yosso, 2005). Aspirational capital refers to “the ability to maintain hopes and dreams for the future” (Yosso, 2005, p. 77) despite adversity. Linguistic capital refers to the intellectual and communication skills that emerge from multilingualism. Social capital is access to community resources (Yosso, 2005), including, but not limited to, information and support for attaining education, employment, health care, and legal support. Familial capital is the cultural remembrance and intuition that families cultivate together. Within this form of capital, the notion of family is expanded to include extended family, neighbors, and friends with a shared interest in community well-being. Navigational capital refers to skills for existing within social institutions that may be unwelcoming to historically marginalized people. Finally, resistant capital is the multidimensional skills and knowledge enacted when resisting and challenging inequities (Yosso, 2005). These six forms of capital recognized by community cultural wealth are interrelated and support each other to collectively reveal the strengths and skills embedded within and across historically marginalized families and communities.

Parent Training and Information Centers

In exploring the family advocacy styles in navigating the special education system, Trainor (2010) pointed out the inherent conflict of schools tasked with providing services to youth with disabilities and their families while simultaneously being expected to act as their advocates. This conundrum was recognized in early conceptualizations of disability advocacy. To support the training and information needs and build capacity of parents of children (birth to 26) with disabilities, Congress has funded Parent Training and Information Centers (PTIs) since the 1970s (Rossetti & Burke, 2018). In addition to providing training and information to families, these centers also meet the IDEA requirement that states provide families with information about alternative methods of dispute resolution. Centers are designed to serve families living in the area they serve, with Community Parent Resource Centers (CPRCs) focusing, in particular, on underserved families (e.g., those in rural locations, from low-income backgrounds, or with limited English proficiency). Each state has at least one center providing support to families in navigating special education systems to secure appropriate services for their children.

Surprisingly, given the significant federal investment in Parent Centers, there is little research reporting on the families served by these centers and their outcomes. Taking a look at state-specific services, Cooc and Bui (2017) reported findings from an analysis on 29,194 parents served over a 13-year period in Massachusetts. Results showed that White parents, parents from middle- and high-income backgrounds, and parents of children with autism were more likely to contact the parent center for services. The differential use of services by family members by race, income level, and child’s disability label suggests improvements to outreach efforts are needed if the Parent Center is to truly serve all families as intended.

Similarly, national data on Parent Centers are lacking. In recent years, two studies have provided high-level summaries of the families served by the Parent Centers nationwide (Center for Parent Information and Resources [CPIR], 2018; National Parent Technical Assistance Center, 2013). While both of these studies reported high levels of satisfaction with services from families, neither study reported on the use of services, experiences, and satisfaction with services by different background characteristics. Given what is known about the unique experiences of historically marginalized families, this is important missing information that could be used to guide service development and improve outreach efforts to all families.

To address the need for more robust information regarding the experiences of historically marginalized families with Parent Centers, this study seeks to understand the contextualized and nuanced utilization of a local PTI by historically marginalized families. This study is grounded by community cultural wealth (Yosso, 2005), an intersectional and asset-based framework for centering discourses and practices traditionally left out of dominant narratives (DeNicolo et al., 2015). By using community cultural wealth as a lens for understanding the family participants in this study, we were able to conceptualize family engagement beyond professionalized notions to more deeply understand the unique processes families undergo during transition that incorporates their complex and contextually situated values and practices. We sought to learn about the histories, experiences, and recommendations families offered regarding transition planning and to emphasize their resistance to deficit positioning. Through this inquiry, we addressed three research questions:

Research Question 1: What factors influence historically marginalized families’ perceptions, actions, and advocacy regarding the transition to adulthood for their children with disabilities?

Research Question 2: What strategies and supports do historically marginalized families and their communities utilize to resist and counter marginalization?

Research Question 3: How do PTIs support or constrain these efforts?

Method

This study arose from a larger project in which a group of researchers and PTI leaders worked together to develop a transition training responsive to historically marginalized families (Morningstar et al., 2015). Focus groups and interviews were used to understand the experiences of families from historically marginalized backgrounds to inform the development of the training. Participants were recruited in a variety of ways. First, families were recruited for the study through announcements and the distribution of recruitment materials at the local PTIs’ transition information sessions. These sessions were targeted to culturally and linguistically diverse families; however, all families utilizing PTI services were invited to participate. No one was excluded from the focus groups. Also, the research team worked directly with the PTI to identify historically marginalized families from culturally diverse backgrounds within their network. Once identified, PTI staff contacted them directly to solicit their participation. Because no Asian families had participated in the PTI’s activities in the past year, families identifying as Korean or Chinese were recruited through informal community outreach by a Korean member of the research team. All participants were informed through appropriate human subjects methods that their participation was voluntary and would not impact future involvement with the PTI.

Data were collected using qualitative methods via a combination of six one-time focus groups and three individual interviews. Focus groups took place at the PTI center and individual interviews were conducted by phone. Focus group inquiry, specifically because of its interactive nature, served as the primary method whereby discussion among group members was a critical element for eliciting meaningful responses. Focus groups offered participants an opportunity to examine and critique their unique perspectives, as well as consider the collective viewpoint of the group (Gibbs, 2012). Due to limited involvement among Asian families with PTI, interviews were used to investigate Asian families not affiliated with the PTI. Interviews supported participants in reconstructing and articulating meaning to personal experiences (Seidman, 2006). The use of these qualitative methods provided families, particularly those facing marginalizing oppressions, the opportunity to express counter-narratives (Connor, 2009) regarding transition, as well as their experiences with PTIs. Focus group and interview facilitators followed semi-structured guides that aimed to elicit information regarding the research questions; however, ancillary questions differed among focus groups and interviews based on participant responses to allow for deeper inquiry around topics important to participants.

Participants

The 36 family participants encompassed a culturally and racially diverse sample, including White (n = 11), African American (n = 10), Latina (n = 9), Chinese (n = 3), Korean (n = 2), and multiracial (n = 1), racial and ethnic identities. The 11 White participants were present at the transition information sessions representing unique cultural marginalization experiences including geographic locations (e.g., rural), socioeconomic status (low income), and disability. Thirty-one mothers, four fathers, and one grandmother of children ranging from age 12 to 18 comprised the sample. Each focus group and interview lasted from 30 to 70 min, with focus groups consisting of three to seven participants. Six parent participants were also PTI staff, one of whom was Dominican and conducted a focus group in Spanish. This participant followed the written focus group protocol and served a dual role of both facilitator and offering her own elaboration to the family comments, and a member of the research team was also present. All other focus groups and interviews were conducted by members of the research team, with one interview conducted in Korean by a member of the research team. The interview and focus groups conducted in languages other than English were translated and transcribed to English by the facilitator, and the data were coded in English by the authors. Children of the families were identified with a range of disabilities, including autism (n = 7), intellectual disability (n = 11), attention-deficit hyperactivity disorder (n = 1), physical disability (n = 1), behavioral challenges (n = 1), health-related needs (n = 1), and unreported (n = 14).

Data Analysis

The researchers engaged in iterative data analysis that consisted of multiple rounds of coding and meaning-making (Bhattacharya, 2017). A cultural wealth orientation was used for data analysis to identify the experiences as well as strengths of the families, their children, and communities (Yosso, 2005). Open coding was conducted and, once coded, all excerpts were sorted by codes and examined for emergent themes. Several strategies were utilized to increase the trustworthiness and credibility of the findings including data, investigator, and theory triangulation, identification of disconfirming evidence, audit trails, peer debriefing, and collaborative work (Brantlinger et al., 2005). Theory triangulation was employed by engaging with extant literature related to themes to define and conceptualize how these themes aligned with existing information (Brantlinger et al., 2005; Tracy, 2010). Initial and subsequent coding stages included unitizing, categorizing, defining, and code application (Saldaña, 2013), thereby identifying themes. This also provided the opportunity to identify and discuss outliers and potentially disconfirming data (Brantlinger et al., 2005).

Confirmability of the data analysis and results occurred across several stages of collaboration. First, each researcher independently coded eight of the nine (89%) transcripts and then met to discuss discrepancies and reach agreement in code definitions and summative themes (Denzin & Lincoln, 2017). Axial coding was used to reorganize and refocus initial categories (Saldaña, 2013). The primary researcher then coded the remaining transcript. A qualitative data analysis software, Dedoose (Dedoose 8.1.8, SocioCultural Research Consultants, LLC), was used to analyze code-specific results and identify frequencies, patterns, and themes across data. The researchers wrote analytic memos describing emerging themes and potential relationships among codes (Charmaz, 2014). Finally, an audit trail was conducted by the researcher with qualitative research expertise. This involved first examining and reviewing a subset (20%) of the transcripts, the codebook, and all coding procedures to confirm consistency of the code. Next, the coded data were examined to confirm resultant themes and conclusions.

Results

Overlapping themes emerged from the data analysis, revealing the connectedness among family advocacy, availability of resources, and consistency of lower expectations among school personnel. The findings were organized thematically describing how the families think about, act, and advocate for their children as they enter adulthood by strategically enacting various forms of community and family cultural wealth (Yosso, 2005). Historically marginalized families have been traditionally positioned as deficient in their parenting (Lalvani, 2014) and school involvement activities (Cooper, 2009). Therefore, these results foreground the additional labor historically marginalized families must enact to support their children with disabilities in the transition to adulthood, as well as reveal the ways all families experience impediments to transition services and supports. First, we describe how families negotiated their roles with schools, their extended family, and the community at large. Second, we report forms of resistance families used in response to the schools’ predominantly deficit positioning. Finally, we describe how and why families contributed to, as well as accessed, family and community supports, including supports and services offered by the PTI.

Parenting as a Contextually Situated Practice

Results reflected the dynamic act of parenting. Participants described multiple examples of building their child’s familial capital through teaching their children values (e.g., respect, responsibility, helping people in need) and skills (e.g., chores, asking for help), as exemplified by this mother:

When we drove, I made him give me directions and I pointed out landmarks . . . There’s your brother’s school. There’s grandma’s house. There’s the church, and I would say do we go left or right to get there, and I would go whichever way he said.

This example also illustrates a form of navigational capital in which the location of supportive places within the student’s community are taught and reinforced. Furthermore, examples emerged of family members renegotiating their parenting in response to their child’s needs. One parent said, “We might retreat to the house, re-group, how can we do that better the next time? Or what the heck were we thinking?” In many of these instances, participants utilized their familial capital in relying upon their immediate family for answers and solutions.

Families also described building their child’s familial and aspirational capital, as described by Yosso (2005), by investing in their children’s futures through loving relationships. For example, this grandmother described her distinct relationship to her granddaughter: “Now, like I’m very close to [Granddaughter’s Name] . . . she comes in the room every evening and sits in there and we talk, and I tell her truth and it seems to be working. It seems to be working.” Their nightly routine of spending time together illustrates the emotional investment in her granddaughter’s future well-being. Another participant who described resistant capital by supporting her daughter academically to defy barriers to her success:

But she’s growing in reading very well. So, I try to help her read books and also write down her thoughts. And typing. Her handwriting is not good, but I think with modern technology, she can skip a lot of things with the computers. So, she may, in the future, write things with a keyboard and calculate things with a calculator. She doesn’t have to, you know, memorize the multiplication tables.

This mother recognized her daughter should not be limited by what she cannot do. Enacting both resistant and aspirational capital, families reported actions to develop their child’s capabilities despite what others may have used to justify holding them back.

All participants described a desire for a meaningful life for their children through employment, interests and hobbies, helping others, and companionship. Families also expressed fears about their child’s future. While family members desired independence for their children, they expressed difficulty imagining someone else being able to provide the same level of care that they offered, especially when potential caregivers fell outside of trusted social networks. Furthermore, families felt strongly about protecting their children from real and often violent interactions with others who showed a disregard for their child’s humanity. For example, one mother described discovering that a care attendant had been eating her child’s lunch after installing a camera in her home. Similarly, another mother recounted discovering that her son was being left to sit in the restroom at school for long periods of time, unable to call for help. She stated, “He knew I think what he needed to do, but he couldn’t physically do it. He didn’t ask for help. He just sat there until someone came in . . . It broke my heart for him.” Because of negative past experiences wherein schools exhibited low expectations and even harmed youth with disabilities, a context of warranted distrust was a thread throughout the data. Furthermore, ineffective efforts to partner with schools led to a breakdown of trust over time, as this father describes:

They [the school] don’t get it. Even when you paint it, the clearest picture and write it out, they’re not getting it. It’s so sad, because I say to them, I said if you kicked them out of school, then they go out to the community and what are they supposed to do? . . . So I think a major component is educating the school system, working as a team, which I’ve really tried to do, but now it’s unfortunate because it’s gotten to the point where it’s like I’ve shut down because you lose that trust.

In summary, parents displayed forms of community cultural wealth (Yosso, 2005), such as aspirational capital through future-oriented actions aimed at preparing their children for possible futures. Families built their children’s familial and navigational capital by proactively engaging their children in learning values and skills, especially when they perceived barriers to others providing their children with needed supports.

Resistance to Deficit Positioning by Schools

Participants discussed various priorities for their children in school, ranging from academic engagement to developing comprehensive life skills, although only a few family members described being pleased with the opportunities their child’s school afforded. Parents routinely encountered school personnel who maintained low expectations of their children. Students and families were often given limited choices in career development and pre-employment opportunities. Because of these low expectations, families revealed that school experiences were not the most important factor in supporting families and students. Instead, families were more likely to attribute their child’s preparedness for adulthood to the family or community, as this mother described:

I don’t know that I’ve relied on the school to do it. It’s been the community. Resources in the community and just, I don’t know. I don’t know that really any of it’s come from the school. They’ve provided some good parameters but it’s like an eight to three parameter. There’s really nothing outside of that.

Hence, this parent drew from the social capital of her community to prepare her child with extensive support needs.

Similarly, a parent lamented the school’s lack of responsibility: “Yeah, like when I told the teachers to give her more homework and they still haven’t done that. So, I’ll just, you know, find some homework for her to do at home.” This was followed up with her decision not to insist the school follow through, “I, yeah, make some suggestions and if they don’t follow up, I don’t, you know, confront them.” These examples display resistant capital through nontraditional advocacy, where it is considered not appropriate, nor worthwhile, to try to force teachers to do their jobs.

The following quote is from a mother who described filtering information she received about her son, utilizing aspirational capital to maintain high expectations:

I was told by [Name of Hospital] this summer that my child had academically reached his “plateau,” is the word they gave me. Not to expect anything else academically. He started reading, fourth grade, but he started reading for the first time. I said, you’re wrong.

As illustrated by the above quote, low expectations from professionals permeated the messages received by families about their child’s potential across multiple professional contexts (e.g., hospitals, schools) and grade levels. Another mother explained the need for constant awareness:

. . . the whole school, the whole district actually, they were dismissing all the special kids fifteen minutes early. So, school gets out at 3:15, my son was getting home at 3 o’clock and I’m like just a minute . . . so, you know I basically said, you know, I guess you just have to be on top of it and not just on top of it but ahead of it as much as we can be as parents with children with disabilities.

Along with alertness to inequitable policies and practices, participants described using formal and informal relationships to build community understanding of their child with disabilities. In some cases, especially among the participants who were parents and PTI staff, advocating for their own children led them to become valuable sources of social and navigational capital for other families. In other instances, parental roles extended beyond the parent–child relationship to others experiencing oppression:

I am a manager there [Fast Food Restaurant] and I fight with employees because they mistreat that employee [with Down Syndrome] . . . and if it were my own son, I would end up in jail . . . In other words, the mom in you comes out.

Here, this mother reveals her strength and exemplifies resistant capital, as noted by Yosso (2005), in continuing to speak out against the abuse endured by a worker with a disability.

Rarely did the participants express how the school played a significant role in preparing their child for adulthood. Even more concerning, the majority of families described the stereotyped beliefs and low expectations held by school staff toward their students. To illustrate, one mother stated the following regarding limited employment experiences offered by the school: “I don’t like them [the school] kinda pigeonholing them into a dishwasher job, or a cleaning job, or a waitress job. That’s bull.”

The families reported their refusal to accept the deficit positioning of their children and themselves by developing positive self-images and skills at home, exercising resistant capital. One mother stated, “I tell my son . . . ‘You have so many talents and gifts that you can be productive with.’ I did that. The school didn’t.” Families reported their resourcefulness and sustained commitment to their child, as they are often left to provide, or locate for themselves, meaningful supports and engaging opportunities for their children on their own. This mother described how she understands and counters the schools’ treatment of students with disabilities:

We are a very involved and active family . . . the public school, they have this old archaic system and they stick to that because it’s almost like they want to kick them out of school so they don’t have to deal with it, but it’s like, you’re not helping the child . . . These are kids that have potential. If you kick them out, what do you think is gonna happen? So that’s what I use to try to get my kids where they need to go.

Families were adept at perceiving when schools and professionals held discriminatory beliefs and low expectations of their children. Participants described focusing on relationships where they could make a discernible difference and ignoring opinions of those who were unable or unwilling to value their child’s abilities and potential.

Family and Community Supports

Participants described a highly personal, complex process of engaging with family and community supports. Decisions to use or act upon certain supports were often contingent on the relationship status between the individuals. It was critical that families perceived that the support offered and the people providing them were trustworthy. Supports needed to be feasible and accessible, thereby accommodating to the specific needs of the child and/or family. Because of the importance of relationships, formal community supports and resources were not always valued. It was often the informal supports that emerged as critical to the families’ well-being, primarily due to embedded relationships. For example, one mother described the support she received from a colleague:

My family couldn’t handle him so if I had to work after hours, the daycare was closed so I had to take him to work with me and there was a lady who answered the phone and we’re in the same office and he would play underneath her desk while she was answering the phone and have a great time and she was very understanding and I could go back and get my billing done and not worry about him.

The support of her coworker was an important informal aspect of social capital that allowed this working mother to maintain her job. One mother suggested the value of families receiving support from other families for building social and navigational capital:

There should be some kind of cycle that’s making the circle bigger for us being able to help other people who are starting from the beginning, like the way we are, where everything stays connected so that we can start to basically try to . . . diminish all the things these families have to go through . . . at school, in the workplace, going to college, and moving up. I would like for them to be able to give back in the process.

This mother described her vision of expanding the connectivity of families with children with disabilities, particularly when they face structural and societal barriers. For some participants, the PTI modeled this vision of family to family support. One father described how he wished the training and community support provided by the PTI had come before his recent meeting with the school:

I go over to the school at least twice a week. Not that [Name of Child] is in trouble, but just to peek in and see what’s going on, and we just had his IEP [meeting] this morning matter of fact, and we should have done it a couple of years ago but we did it this morning, and I was thinking about this the whole time, I was like I wish this was the day after tomorrow that I was going in for this so I can soak up more of this.

This father encountered school personnel who persistently ignored him and his son’s needs, despite his active school involvement. The PTI, then, acted as a trustworthy outlet to share his experiences and support his ongoing advocacy efforts on behalf of his son.

PTI-specific supports

Results revealed how the PTI offered an avenue for empowering families to evaluate their own capacities to seek out resources. For example, one mother described the PTI as helping people “with poverty and getting people on their feet.” This comment focused on a more expansive view of the PTI’s sphere of influence in helping families meet basic needs.

As previously mentioned, family engagement was described in contextually specific ways that evolved over time. Some participants described moving from a place of withdrawal or shame to places of self-assuredness, advocacy, and a desire to reach other parents who may be beginning their own journey as a parent of a child with a disability. The issue of trust remained central to their engagement with community services and supports. Information and outreach provided by the PTI was not always immediately accepted by families, possibly because other institutions, such as schools, did not always put their child’s best interest first. As families became more engaged with the PTI, many reported that their knowledge and competencies increased, which helped them to better discern where, and with whom, to place their trust. One parent reflected on her journey to connecting with PTI supports:

In years back, they had invited me to join this program, and because of my job, and because I did not want to accept that my child’s disabilities . . . I have 5 months where I have been here. And I’ve felt that I have a milestone with my children, with both my children who are well, as well with my disabled son. And I felt that I myself have . . . I did not want to accept it, and after I joined this program, I’ve felt more . . . I have opened a space because if I continue holding on to that, I would still be helping my husband. And yet, I tell him, “You know what? I’m going to join.” I need help for my son.

In this circumstance, this mother described acting on behalf of her son at the risk of disrupting her marital relationship, revealing the contextually and culturally situated process of decision-making.

Information provided by PTIs through individualized supports and trainings proved vital to some of the participants to navigate special education services. One mother described resorting to threatening the school with legal action after dealing with condescension and indifference from school personnel when she confronted them about her son being bullied. She attributed her confidence in discussing legal issues as a result of information provided by the PTI and her own strategic use of that information, revealing her use of resistant capital. Another parent, when asked about how her son was doing in school, responded with her own resistant capital, using tactics to oppose the deficit positioning of her son through strategic advocacy gained from the PTI:

Six months ago, you would have got an earful because [Name] wasn’t going into the community because there wasn’t enough staff and they started saying that it had to take two staff and I’m like well, do a functional behavioral assessment and tell me why it takes two. But I knew the words to say. And so, it, but it’s all based on administrative convenience as to how, what he was doing at that time. But now that I know what was going, I knew what was going on, but now that they know I know, things are going great.

PTI resources were helpful to families who did not speak English, especially through staff who could draw from their own experiences as English language learners to empower other families to recognize their value:

After arriving at [the PTI], and finding out what the law says, how the law is very clear, and explains the services you qualify for and have to receive, then this has really helped me to help other parents to explain to them, and most of all Hispanic families, because unfortunately the law is written in the English language . . . Then to be able to explain what it says, and to participate in meetings to help them, so that they themselves can advocate. And I always say, you are the main voice.

This example displays the linguistic capital embedded in authentic cultural and linguistic supports.

Despite the success of parent-to-parent empowerment, participants who were also PTI staff faced barriers to providing needed supports to families, often feeling overwhelmed by presumed high-stakes responsibilities. For example, if a parent canceled a meeting or the opportunity for the staff member to advocate on behalf of the child, the PTI staff member feared it would be a long time before they would be available to provide support, especially when parents were facing multiple oppressions limiting their ability to reengage. Furthermore, PTI staff felt responsibility for promoting change on a macropolitical scale:

But we don’t do systems change. We’re here to help families. I mean, that is how we help them, help families and through helping families is educating together and educating the community. We do do some systems change. I mean, look at seclusion restraint or ESI [Emergency Safety Interventions], those kinds of things—we’re a part of it but you’re right, we have too many jobs.

A sense of social capital was exhibited through relationship-focused interactions rather than the capacity of PTI to address systemic injustices. The PTI staff aimed to teach and empower families to advocate on their own. For families, these goals were often overwhelming in unfamiliar and bureaucratic systems, as this mother describes:

So, I look for the daycare for [Daughter’s Name] and it’s crazy. Because she is screaming and the daycare say “Oh, we cannot help you.” And they didn’t enroll her in, so. So that is, I try and try and look for everywhere. But I contact [PTI] again so they give me a list of daycares. But it’s a call one by one.

The findings from these data revealed parenting as a dynamic practice, influenced by social and cultural contexts. All families engaged in an array of activities aimed at preparing their youth for life after high school, often acting in supplement or in place of what the school provided. Aspirational and linguistic capital were employed to empower other families with needed information to enact resistant capital in their own particular school contexts. Supporting children with disability within marginalizing contexts required not only advocacy efforts, but also resistance to the deficit positioning of schools. The PTI offered some supports and did bring families together who faced similar oppressions and experiences. The PTI, however, was limited by geography, staffing, and resources to provide intensive and individualized support needed by some families.

Discussion

Through this qualitative study we sought to understand the strategies and supports families enacted to counter discriminatory and oppressive structures and practices during the transition to adulthood. Community cultural wealth (Yosso, 2005) provided the lens through which to view intersecting oppressions at microinteractional, social, and political levels that are simultaneously entangled (Yuval-Davis, 2006). We found families made strategic decisions to engage or not based on contextual and historical factors, and that often these decisions were in response to being framed as deficient by schools or professionals. Family and community supports were one way to resist and compensate for a lack of valued school experiences.

(Re)Positioning Families

The lens of community cultural wealth allowed us to (re)position families in this study by demonstrating the ways all families actively supported their children, often in opposition of the school. All forms of community cultural wealth were present and overlapping in the findings of this study. We were able to understand how families responded to, or worked around, the barriers generated by schools and other professionalized systems. Their actions represented forms of resistance capital aligned with this repositioning. Familial role construction emerged as fluid and evolving in our findings, associating with Davies and Harre’s (1990) theory of repositioning in which the focus of attention is on the dynamic aspects of familial encounters. Given that family attendance at IEP meetings is considered by schools as a core element of transition involvement for families of youth with disabilities, the findings of this study call for a broader understanding of educational involvement as fluid, contextual, and sometimes driven by school failure to understand and meet the needs of their children.

Families in this study displayed aspirational capital—the ability to hold onto hope in the face of structured inequality (Yosso, 2005)—by describing their investments in the future of their youth through loving relationships. The results of this study revealed several strategies families used to support their children and prepare them for adult life, although these strategies did not always align with the values and expectations of formal systems such as schools. Strategies included parent-to-parent support, use of informal community networks, intimate knowledge of and connection to their children, and teaching their children the values they considered most valuable in lieu of engaging with professionals who maintained low expectations.

Research has shown that negative treatment of culturally and linguistically diverse families by school professionals leads to mistrust (Hirano et al., 2018). Parent engagement is known to be substantially impacted by the actions of school administrators and teachers (Hirano & Rowe, 2016), and deficit approaches to disability by school personnel discourage engagement (Kozleski & Thorius, 2013). Trainor (2010) described parental advocacy in special education as primarily used by White, middle-, and upper-class families. In this study, however, strategic parental advocacy was used by families of all demographics, in which they combined knowledge of special education with the unique strengths and needs of the family. The concept of parental advocacy deepened when centralized around vigilance to locate and resist discriminatory, negative, and limiting perceptions of their children with disabilities. Overall, this study revealed that PTIs can provide families some of the tools (e.g., emotional support, special education knowledge) needed to enact more effective advocacy for their children and draw from the social wealth already embedded in their families and communities.

Limitations and Implications for Future Research

There are several limitations of the study that should be considered. First, due to the qualitative methods used in this study, the findings are likely to not represent the views and experiences of all families of students with disabilities. Next, recruitment methods reached mostly family members who were connected to a PTI; therefore, the voices of families not already familiar with the work of PTIs are not represented in the results. Finally, the inclusion of White families in the sample precluded us from drawing conclusions that are solely based upon the experiences of historically marginalized families of color. Therefore, we are unable to draw any conclusions about the prevalence of these perspectives and experiences. The limitations of this study serve as an impetus for future research in several areas.

Three primary implications for future research emerge from the findings of this study as well as study limitations. First, specific PTI structures and programming that facilitate the involvement of diverse staff, volunteers, and families should be explored to better serve the diverse population of families who should be able to access needed supports through PTIs. As was discovered during the recruitment phase, the PTI through which participants were being recruited did not have record of serving any families who identified as Asian despite the presence, albeit a small population, of Asian families in the community. Research addressing the underrepresentation of historically marginalized families accessing PTI services should be addressed through research aiming to better serve these communities. Second, perspectives of diverse families of youth with disabilities who are not already connected to a PTI network on transition planning should be included in subsequent research. Findings could illuminate alternate experiences of families not connected with PTIs and provide a unique perspective on strategies PTIs could use to effectively engage these families. Third, research on family engagement in transition should utilize frameworks that allow for an understanding of social and political contexts that intersect with special education transition planning for historically marginalized families. Continuing to examine disparities in school-based family involvement and postschool outcomes for youth with disabilities from historically marginalized backgrounds without these frameworks keeps buried the hidden barrier of racism, making it impossible to dismantle the associated obstacles (Trainor, Newman, et al., 2019).

Implications for Policy

School policy is needed that targets a broader range of practices leading to transition outcomes of students with disabilities who face intersecting forms of marginalization, such as ableism, racism, and classism. Such efforts must include addressing teacher and service provider biases, given it has been noted that programs and practices for engaging families are successful when schools value families (Hirano & Rowe, 2016). For example, schools can undergo cultural competence training for personnel or focus on improving language supports provided to non–English-speaking families, both which can lead to greater understanding of family perspectives (Rossetti & Burke, 2018).

Furthermore, and more importantly, increasing cultural competency of school personnel can lead to the use of proactive planning tools that reflect high expectations, such as inclusion in general education, a variety of employment/work experiences, including integrated, paid employment, and culturally relevant student supports (Test et al., 2009). Such efforts will more likely consider both the intersectionality of historically marginalized families, as well as value and promote the cultural wealth of families and communities. School policies should reflect a commitment to individualized transition planning by focusing on interpersonal relationships and utilizing culturally responsive pedagogy (Nieto, 2013).

Policy could also be used to improve what we know about PTIs and their effectiveness. First, the publicly available information on the families and professionals served and the services provided is limited (CPIR, 2018). In a 2018 report, CPIR reported that nearly 68% of contacts made were in English, 27% in Spanish, and 5% in other languages. In 2013, the National Parent Technical Assistance Center reported only on the percentage of families served from culturally and racially diverse backgrounds. Without more detailed information on the families served by the PTIs, it is difficult to begin interpreting their reach. With the statistics provided, however, it appears that culturally, racially, and linguistically diverse families are not being served at the same rate as White, English-speaking families. For example, the 2013 (National Parent Technical Assistance Center) report indicated that only 27% of families served were from culturally and racially diverse backgrounds, yet in the same time period, non-White students comprised 47% of the students receiving special education services (Snyder et al., 2016). Understanding who is not being served by the PTIs could help inform recruitment practices.

Also, there is need to understand the effectiveness of the services provided, which could be enhanced through more attention to outcomes in PTI reporting policies. Currently, PTIs submit annual reports to the Office of Special Education on effectiveness and satisfaction with services based on survey data from a random sample of 25 families who received individual assistance and 25 families who attended a workshop. While social validity is an important component of intervention and service provision, more rigorous exploration of the effectiveness of the PTIs in affecting the outcomes (e.g., parent education and empowerment) they were designed to promote.

Implications for Practice

PTIs and their sister CPRCs provide valuable services and supports to families of children with disabilities. However, they may not be sufficiently equipped to support historically marginalized families facing competing and complex barriers to transition planning. The results of this study revealed the need for parent support organizations to push back against the low expectations for all students and especially for students for whom racism and ableism are co-constructed (Annamma et al., 2013). This requires proactive and targeted outreach to historically marginalized families to engage them with other parents who have faced similar struggles, drawing on the rich community cultural wealth evident in this study.

Rossetti and Burke’s (2018) study on PTI outreach suggests PTIs work to support families in meeting multiple needs, such as emotional well-being, violence in their communities, food insecurity, as well as citizenship and legal issues. PTIs can and should offer consistent supports over time, in various formats, with an understanding that families experience shifting needs and availability. This study helped to demonstrate how targeted PTI supports, such as facilitating parent-to-parent networks and language supports for English learners, can be developed and offered based on family and community needs and their cultural wealth, drawing on the unique community networks, skills, and cultural practices already embedded in families and communities that can work to support their children during transition. Outreach to historically marginalized families should utilize parent-to-parent interactions, provide information in a variety of accessible formats, and should be attuned to the priorities and needs expressed by other families within shared communities (Hirano et al., 2016).

PTIs should be one pillar in the larger scope of family supports, not a replacement for what schools should provide. Promising work by schools to increase employment opportunities for students with disabilities through Community Conversations (Trainor et al., 2012) should be further developed to help meet the needs of historically marginalized communities while building relationships and cultural understandings (Parker-Katz et al., 2018). The findings from this study imply that while PTIs can help to hold schools accountable through advocacy work, and they can also partner with schools on behalf of families to promote higher expectations and greater opportunities for students with disabilities, particularly for students of color who face additional marginalization due to racism. In this study, family participants displayed both being empowered to take on the schools’ inequitable and discriminatory practices and strategic in utilizing knowledge acquired from the PTI, that in turn fostered more engagement with schools.

The current study examined how families exerted community cultural wealth in their experiences with transition planning with schools, and in their experiences with their state’s PTI. Findings demonstrate how parenting and community are intertwined in complex ways. Schools were often viewed as sites wrought with low expectations of children and youth with disabilities. Participants displayed a disposition toward activism and resistance to deficit positioning of their child in preparation for their transition to adulthood. Their contributions to build understandings of injustices at the intersections of disability, race, and other societal oppressions should not go unheard.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

References

Annamma

S. A.

Connor

Ferri

(2013). Dis/ability critical race studies (DisCrit): Theorizing at the intersections of race and dis/ability. Race Ethnicity and Education, 16(1), 1–31. https://doi.org/10.1080/13613324.2012.730511

Bhattacharya

(2017). Fundamentals of qualitative research. Routledge.

Brantlinger

Jimenez

Klingner

Pugach

Richardson

(2005). Qualitative studies in special education. Exceptional Children, 71(2), 195–207. https://doi.org/10.1177/001440290507100205

Center for Parent information and Resources. (2018). A year in the life: Parent centers in action. https://www.parentcenterhub.org/2017-data-collection-results/

Charmaz

(2014). Constructing grounded theory. SAGE.

Connor

D. J.

(2009). Breaking containment—The power of narrative knowing: Countering silences within traditional special education research. International Journal of Inclusive Education, 13(5), 449–470. https://doi.org/10.1080/13603110701789126

Cooc

Bui

O. T.

(2017). Characteristics of parent center assistance from the federation for children with special needs. The Journal of Special Education, 51(3), 138–149. https://doi.org/10.1177/0022466917696285

Cooper

C. W.

(2009). Parent involvement, African American mothers, and the politics of educational care. Equity & Excellence in Education, 42(4), 379–394. https://doi.org/10.1080/10665680903228389

Davies

Harre

(1990). Positioning: The discursive production of selves. Journal for the Theory of Social Behavior, 20(1), 43–63. https://doi.org/10.1111/j.1468-5914.1990.tb00174.x

10.

DeNicolo

C. P.

González

Morales

Romaní

(2015). Teaching through testimonio: Accessing community cultural wealth in school. Journal of Latinos and Education, 14(4), 228–243. https://doi.org/10.1080/15348431.2014.1000541

11.

Denzin

N. K.

Lincoln

Y. S.

(Eds.). (2017). The SAGE handbook of qualitative research (5th ed.). SAGE.

12.

Geenen

Powers

L. E.

Lopez-Vasquez

(2005). Barriers against and strategies for promoting the involvement of culturally diverse parents in school-based transition planning. Journal for Vocational Special Needs Education, 27(3), 4–14. https://files.eric.ed.gov/fulltext/EJ854361.pdf

13.

Gibbs

(2012). Focus groups and group interviews. In Arthur

Waring

Coe

Hedges

(Eds.), Research methods and methodologies in education (pp. 186–192). SAGE.

14.

Haber

M. G.

Mazzotti

V. L.

Mustian

A. L.

Rowe

D. A.

Bartholomew

A. L.

Test

D. W.

Fowler

C. H.

(2016). What works, when, for whom, and with whom: A meta-analytic review of predictors of postsecondary success for students with disabilities. Review of Educational Research, 86(1), 123–162. https://doi.org/10.3102/0034654315583135

15.

Hetherington

S. A.

Durant-Jones

Johnson

Nolan

Smith

Taylor-Brown

Tuttle

(2010). The lived experiences of adolescents with disabilities and their parents in transition planning. Focus on Autism and Other Developmental Disabilities, 25(3), 163–172. https://doi.org/10.1177/1088357610373760

16.

Hirano

K. A.

Garbacz

S. A.

Shanley

Rowe

D. A.

(2016). Parent involvement in secondary special education & transition: An exploratory psychometric study. Journal of Child and Family Studies, 25, 3537–3553. https://doi.org/10.1007/s10826-016-0516-4

17.

Hirano

K. A.

Rowe

D. A.

(2016). A theoretical model for parent involvement in secondary special education. Journal of Disability Policy Studies, 27, 43–53. https://doi.org/10.1177/1044207315583901

18.

Hirano

K. A.

Rowe

D. A.

Lindstrom

Chan

(2018). Systemic barriers to family involvement in transition planning for youth with disabilities: A qualitative metasynthesis. Journal of Child and Family Studies, 27, 3440–3456. https://doi.org/10.1007/s10826-018-1189-y

19.

Individuals with Disabilities Education Act, 20 U.S.C. § 1400 (2004).

20.

Kozleski

E. B.

Thorius

K. K.

(Eds.). (2013). Ability, equity, and culture: Sustaining inclusive urban education reform. Teachers College Press.

21.

Lalvani

(2014). The enforcement of normalcy in schools and the disablement of families: Unpacking master narratives on parental denial. Disability & Society, 29(8), 1221–1233. https://doi.org/10.1080/09687599.2014.923748

22.

Landmark

L. J.

Zhang

D. D.

Montoya

(2007). Culturally diverse parents’ experiences in their children’s transition: Knowledge and involvement. Career Development for Exceptional Individuals, 30(2), 68–79. https://doi.org/10.1177/08857288070300020401

23.

Mapp

K. L.

Hong

(2010). Debunking the myth of the hard to reach parent. In Christenson

S. L.

Reschly

A. L.

(Eds.), Handbook of school-family partnerships (pp. 345–361). Routledge.

24.

Mazzotti

Rowe

D. A.

Sinclair

Poppen

(2016). Predictors of post-school success: A systematic review of NLTS2 secondary analysis. Career Development and Transition for Exceptional Individuals, 39, 196–215. https://doi.org/10.1177/2165143415588047

25.

Miller-Warren

(2016). Parental insights on the effects of secondary transition planning on the postsecondary outcomes of graduates with disabilities. Rural Special Education, 35(1), 31–36. https://doi.org/10.1177/875687051603500105

26.

Morningstar

M. E.

Lee

Simonsen

Nix

(April, 2015). Transforming family transition training to be culturally responsive [Paper presentation]. Council for Exceptional Children, San Diego, CA, United States.

27.

National Parent Technical Assistance Center. (2013). Parent centers helping families: Outcome data 2012–2013. https://www.pacer.org/publications/pdfs/ALL-30.pdf

28.

Newman

(2005). Family involvement in the educational development of youth with disabilities. A special topic report of findings from the National Longitudinal Transition Study-2 (NLTS2). SRI International.

29.

Nieto

(2013). Finding joy in teaching students of diverse backgrounds: Culturally responsive and socially just practices in U.S. classrooms. Heinemann Publishers.

30.

Parker-Katz

M. B.

Cushing

L. S.

Athamanah

(2018). Fostering collaboration as transition specialists through community conversations. Journal of Disability Policy Studies, 28(4), 244–254. https://doi.org/10.1177/1044207317739407

31.

Povenmire-Kirk

Lindstrom

Bullis

(2010). De Escuela a la vida adulta/From school to adult life: Transition needs for Latino youth with disabilities and their families. Career Development for Exceptional Individuals, 33(1), 41–51. https://doi.org/10.1177/0885728809359004

32.

Rossetti

Burke

M. M.

(2018). Reaching out to culturally and linguistically diverse families: Strategies and challenges reported by parent training and information center staff. Exceptionality, 27(3), 215–231. https://doi.org/10.1080/09362835.2018.1433042

33.

Rueda

Monzo

Shapiro

Gomez

Blacher

(2005). Cultural models of transition: Latina mothers of young adults with developmental disabilities. Exceptional Children, 71(4), 401–414. https://doi.org/10.1177/001440290507100402

34.

Saldaña

(2013). The coding manual for qualitative researchers (2nd ed.). SAGE.

35.

Seidman

(2006). “Why interview?” And “a structure for in-depth, phenomenological interviewing.” In Seidman

(Ed.), Interviewing as qualitative research (pp. 7–27). Teachers College Press.

36.

Sheehey

P. H.

(2006). Parent involvement in educational decision making: A Hawaiian perspective. Rural Special Education Quarterly, 25(4), 3–15. https://doi.org/10.1177/875687050602500402

37.

Snyder

T. D.

de Brey

Dillow

S. A.

(2016). Digest of education statistics 2014 (NCES 2016-006). National Center for Education Statistics, Institute of Education Sciences, U.S. Department of Education. https://nces.ed.gov/pubs2016/2016006.pdf

38.

Test

D. W.

Mazzotti

V. L.

Mustian

A. L.

Fowler

C. H.

Kortering

Kohler

(2009). Evidence-based secondary transition predictors for improving post-school outcomes for students with disabilities. Career Development for Exceptional Individuals, 32(3), 160–181. https://doi.org/10.1177/0885728809346960

39.

Tracy

S. J.

(2010). Qualitative quality: Eight “Big-Tent” criteria for excellent qualitative research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/:10.1177/1077800410383121

40.

Trainor

A. A.

(2010). Diverse approaches to parent advocacy during special education home-school interactions: Identification and use of cultural and social capital. Remedial and Special Education, 31(1), 34–47. https://doi.org/10.1177/0741932508324401

41.

Trainor

A. A.

Carter

E. W.

Karpur

Martin

J. E.

Mazzotti

V. L.

Morningstar

M. E.

Newman

Rojewski

J. W.

(2019). A framework for research in transition: Identifying important areas and intersections for future study. Career Development and Transition for Exceptional Individuals, 43(1), 5–17. https://doi.org/10.1177/2165143419864551

42.

Trainor

A. A.

Carter

E. W.

Swedeen

Pickett

(2012). Community conversations: An approach for expanding and connecting opportunities for employment for adolescents with disabilities. Career Development and Transition for Exceptional Individuals, 35(1), 50–60. https://doi.org/10.1177/0885728811419166

43.

Trainor

A. A.

Newman

Garcia

Woodley

H. H.

Traxler

R. E.

Deschene

N. D.

(2019). Postsecondary education-focused transition planning experiences of English learners with disabilities. Career Development and Transition for Exceptional Individuals, 42(1), 43–55. https://doi.org/10.1177/2165143418811830

44.

Wilt

C. L.

Morningstar

M. E.

(2018). Parent engagement in the transition from school to adult life through culturally sustaining practices: A scoping review. Intellectual and Developmental Disabilities, 56(5), 307–320. https://doi.org/10.1352/1934-9556-56.5.307

45.

Yosso

T. J.

(2005). Whose culture has capital? A critical race theory discussion of community cultural wealth. Race Ethnicity and Education, 8(1), 69–91. https://doi.org/10.1080/1361332052000341006

46.

Yuval-Davis

(2006). Intersectionality and feminist politics. European Journal of Women’s Studies, 13(3), 193–209. https://doi.org/10.1177/1350506806065752