The rate of competitive employment, or employment in community settings for minimum wage or higher, of working-age individuals with disabilities trails behind individuals without disabilities in the United States. These statistics are even more alarming among Hispanic individuals who have disabilities. The purpose of this study was to explore the negative and positive experiences of Hispanic caregivers from a Midwestern state as they support their family members with disabilities to achieve positive postschool outcomes, including competitive employment. We conducted semistructured interviews with 13 caregivers of family members with disabilities aged 14–25 years. Three key themes emerged from our analysis: (a) negative experiences with school educators, (b) negative experiences with community-based service providers, and (c) positive experiences and strategies for overcoming barriers. Implications for practice and future research are discussed.
Competitive employment, or work in integrated community settings for minimum wage or higher, is the primary goal for many young adults as they exit high school, including individuals with disabilities. The benefits of competitive employment are numerous and extend beyond monetary gains. Competitively employed individuals with disabilities report enhanced self-worth, self-determination, peer relationships, community participation, independent living, and overall satisfaction with life (Johannesen, McGrew, Griss, & Born, 2007; Verdugo, Martin-Ingelmo, Jordán de Urríes, Vincent, & Sanchez, 2009). Despite these benefits, federal policies (e.g., the Workforce Innovation and Opportunity Act of 2014) and various agencies designed to enhance employment outcomes (e.g., vocational rehabilitation, workforce centers), the employment rate for working-age individuals with disabilities is 19.7%, versus 65.7% for individuals without disabilities (U.S. Department of Labor, Bureau of Labor Statistics, 2018). Moreover, Hispanic young adults (i.e., Spanish-speaking individuals living in the United States) with disabilities are less likely than their same age non-Hispanic White peers to have received needed services to obtain positive postschool outcomes, such as competitive employment (Antosh et al., 2013).
These poor outcomes for individuals with disabilities are due to several barriers, including poor economy (Francis, Gross, Turnbull, & Turnbull, 2014); long waitlists for support services (Samuel, Hobden, LeRoy, & Lacey, 2012); employer misconceptions about support costs or liability issues (National Council on Disability, 2010); and low expectations for individuals with disabilities among families, educators, and employers (Timmons, Hall, Bose, Wolfe, & Winsor, 2011). In an effort to enhance postschool outcomes, the Individuals With Disabilities Education Improvement Act (IDEIA, 2004) requires that transition planning for students with disabilities aged no older than 16 years include appropriate and measurable postsecondary individualized education program (IEP) goals. IDEIA also mandates that IEP transition plans include services related to postsecondary education, independent living skills, training, and/or employment. However, despite these requirements, many students with disabilities experience poor transition planning (e.g., no work experiences, no competitive employment goals), resulting in students and their families feeling unengaged in the transition process and dissatisfied with supports received from schools (Hetherington et al., 2010). In addition, a lack of coordination and collaboration between educators and service providers also creates a barrier to individuals with disabilities attaining positive postschool outcomes (U.S. Government Accountability Office, 2012).
These barriers are exacerbated among Hispanic individuals with disabilities (Aceves, 2014; Gomez Mandac, Rudd, Hehir, & Acevedo-Garcia, 2012). For example, Hispanic students with disabilities experience a higher likelihood of exclusionary discipline practices, such as suspension (Vincent, Sprague, & Tobin, 2012) and microaggressions at school (e.g., low expectations, bullying, disregard; Dávila, 2015). Unsurprisingly, these experiences contribute to marginalization, low expectations for competitive employment after high school, limited knowledge on how to access available resources, and a lack of resource use among this population (Aceves, 2014; Dávila, 2015). In light of these barriers, the purpose of this study was to explore the negative and positive experiences (e.g., obstacles faced, factors supporting positive outcomes) of Hispanic caregivers as they support family members with disabilities in achieving positive postschool outcomes, including competitive employment.
Importance of Caregivers and Professionals During Transition
Of the individuals found to be the most influential in a person's life, none are as instrumental and impactful as caregivers (Timmons et al., 2011), or unpaid individuals who come in direct contact with, and provide ongoing support to, individuals with disabilities (Boehm, Carter, & Taylor, 2015; Francis, Mueller, Turnbull, 2018). Professionals such as educators and community-based service providers also play an important role in students' postschool outcomes by providing encouragement, resources, transition planning, and employment education (Timmons et al., 2011; Wehman, 2011). Given the importance of familism in Latino culture, or valuing family interdependence and support (Stein, Gonzalez, Cupito, Kiang, & Supple, 2013), coordination and collaboration between caregivers and professionals is essential to enhance successful postschool outcomes among Hispanic students with disabilities. However, many professionals from different cultural origins feel unprepared to collaborate with and support culturally and linguistically diverse families (Kalyanpur & Harry, 2012). This often results in caregivers remaining uninformed and uninvolved in their family members' transition to adulthood (Achola & Green, 2016).
The Hispanic population in the United States is diverse, including individuals who identify as Mexican, Puerto Rican, Cuban, and Columbian, among others. In addition, the current U.S. Hispanic population is expected to increase 115% by 2060 (Colby & Ortman, 2014). However, there is paucity of cross-cultural qualitative research conducted in the United States with historically marginalized families or with participants who speak languages other than English (Lopez, Figueroa, Conner, & Maliski, 2008; Samuel et al., 2012). This gap in the research results in an underrepresentation of the needs and perspectives of non-White, non-English speaking families, which can lead to continued marginalization among this population. The disproportionally poorer postschool outcomes experienced by Hispanic individuals with disabilities and noted gaps in research call for an investigation into the experiences of Hispanic caregivers supporting their family members with disabilities to achieve positive postschool outcomes. The research questions that guided this study included: (a) what negative experiences, barriers, or obstacles do Hispanic caregivers experience as they seek to support positive postschool outcomes, including competitive employment, among their family members with disabilities over time; and (b) what positive experiences or factors do Hispanic caregivers report positively influencing postschool outcomes over time?
For this article, we report the qualitative findings from a 3-year mixed-methods project studying the Family Employment Awareness Training (FEAT), a family-focused training on competitive employment among people with disabilities. All research was approved by the university institutional review board prior to recruitment.
We collaborated with 15 school districts/special services cooperatives and state Parent Training and Information (PTI) Center parent specialists to distribute English and Spanish versions of a 24-page survey to the homes of individuals with disabilities aged 14 and older across a Midwestern state. The survey included 54 questions related to expectations for competitive employment, knowledge of resources, perceived barriers to employment, employment resources used, current employment status, and general demographics (e.g., household income, family member's disability). The survey also offered participants an opportunity to participate in up to three follow-up interviews about their experiences helping their family member with a disability seek or maintain competitive employment. Surveys were mailed with a $2 bill as a pre-incentive to encourage completion.
As our previous research was primarily comprised of English-speaking Caucasian families, we elected to investigate the experiences of 12 Hispanic caregivers who volunteered via the survey to participate in interviews during year one of the 3-year project. Interview participants were paid $30 per interview as an extension of our appreciation for their time and to encourage participation (Haack, Gerdes, & Lawton, 2014). Inclusionary criteria for this study included caregivers who (a) provided ongoing support to a young adult family member with a disability aged 14 years or older, (b) spoke Spanish as their first language, and (c) agreed to participate in up to three interviews. We welcomed participants to invite others (e.g., family members, close family friends) to their interviews to increase their comfort with the process and recognize the importance of familism in Latino culture.
We interviewed 12 Hispanic mothers with family members with disabilities aged 14–25 at the time of the first interview, and one extended family member (an aunt of an individual with a disability) who had been invited to the interview by her sister because she assisted with caregiving responsibilities. All participants lived in or near a town with a population of approximately 27,000 in a rural region of a Midwestern state. Although their countries of origin varied (e.g., El Salvador, Mexico, Puerto Rico), all participants were first generation immigrants who spoke Spanish as their first language. Over half of participants indicated that they were single parents. Most of the participants (67%) reported household incomes ranging from barely above the federal poverty level to below the federal poverty level. Only one participant, Alejandra, reported a household education level above high school (i.e., some college). Table 1 provides additional demographic information for participants.
Interview participants are more likely to gain comfort with researchers and share more information when engaging in multiple interviews (Lu & Gatua, 2014). However, due to time and financial constraints, we did not conduct three interviews with all participants. In total, we conducted 22 interviews over 2 years (see Table 1). For the first round of data collection, we conducted interviews with 13 participants (Beatriz and Ana interviewed together during round one of interviews). For round two, we selected six of those participants to interview again 6 months later, based on them expressing plans to engage in transitional processes (e.g., graduation, internships, family relocations, new jobs) in the near future, to gain a richer picture of transition and employment-related experiences. For round three, we selected four of the six participants in round two to interview again 8 months later, again, based on them expressing plans to engage in transitional processes in the near future.
In order to increase participants' comfort, we offered to meet participants anywhere they felt at ease, including community spaces such as private rooms in public libraries or at the PTI Center office (Haack et al., 2014). All participants elected to meet either in their home or at the PTI Center office (with all participants inviting us into their family homes during the second and third rounds of data collection). All interviews were audio-recorded with participants' permission.
We used semistructured interview protocols to conduct each interview. Protocols across all interviews included questions related to participant: (a) expectations for employment (e.g., “How would you describe your expectations that your child will get and keep a job in your community?”); (b) knowledge of available resources (“How would you describe your knowledge of resources and supports available to your child?”); (c) experiences supporting their young adult with a disability gain competitive employment (e.g. “Tell me about your experiences helping your child seek employment.”); and (d) experiences with school and community services during transition planning in high school and after graduation (e.g., “Talk to me about your child's transition plan in high school.” and “Who is helping your child get a job now that they've graduated?”). We asked follow-up questions related to barriers and positive experiences participants shared (e.g., “How did not having translated documents influence your participation in the IEP meeting?”). We developed this protocol based on literature on transition planning and competitive employment (e.g., Timmons et al., 2011) and previous research conducted with FEAT participants (e.g., Francis, Gross, Turnbull, & Turnbull, 2013).
The first round of interviews with all 13 caregivers used the same semistructured protocol. Subsequent interviews with select participants began with verbally reviewing the major themes and information from the previous interview (e.g., “The last time we met you discussed feeling discriminated against by the school because they did not provide you documents in Spanish. Is that accurate?”). We used this information to set the stage for individualized follow-up questions (e.g., “How did your son's IEP meeting go last month?”).
Selection of interpreters and translators
The backgrounds of researchers and interpreters/translators are essential factors to consider in cross-cultural research (Rogler, 1999). Researchers must also consider nuances in verbal and nonverbal language used, making the inclusion of multiple translators of differing cultural backgrounds crucial to ensuring the trustworthiness of data (Lopez et al., 2008). The primary researchers were English-speaking Caucasian females who worked at a university just more than five hours away from the community in which participants lived. We collaborated with a bilingual PTI Center staff member to contact participants and interpret during interviews. We selected this individual because she was a Mexican immigrant; the mother and grandmother of children with disabilities; and had existing, trusting relationships with many of the participants. We also collaborated with two bilingual student researchers from the university's Department of Spanish and Portuguese. The first was a male Caucasian master's student fluent in Spanish, who taught Spanish courses at the university and was married to a native Spanish-speaker from Guatemala. The second was a female Hispanic undergraduate student, the sibling of a sister with a disability, and the daughter of Mexican immigrants. Both student researchers spoke Spanish in their family homes. The graduate student interpreted during interviews, transcribed and translated interviews, and served on the analysis team. The undergraduate student transcribed and translated interviews and served on the analysis team.
All interviews were conducted in Spanish. We used the passive interpretation model described by Pitchforth and van Teijlingen (2005) to allow the interviewer to be responsive to participants and craft additional follow-up questions. We prepared the PTI Center staff member to interpret during interviews through a series of training sessions using PowerPoint presentations developed by one of the primary investigators. The presentations reviewed: (a) general information about the purpose of the study and interview research processes (e.g., description of semistructured interviews, active listening, questioning techniques); (b) general information about passive interpretation techniques (e.g., researchers asking questions through interpreters, interpreters interpreting participant responses to researchers); and (c) processes for conducting bilingual interviews (e.g., how to manage differences in communication styles, self-reporting potential biases, noting instances that were difficult to interpret, cross-checking interpretations with participants during interviews). However, transcription and translation of interviews in rounds one and two revealed that the PTI Center interpreter sometimes provided additional information that participants did not offer themselves during interviews because she was familiar with their personal circumstances. For example, the PTI Center interpreter disclosed the marital status of multiple participants and sometimes provided information in advance of asking participants interviewer questions (e.g., how many people lived in the family home, the age and disability of family members). We excluded all interpreter-provided information from our analysis. In order to ensure accuracy of future interpretations and participant privacy, we asked participants if they would feel comfortable with the bilingual graduate student researcher co-conducting interviews during round three with the PTI Center interpreter. All participants agreed.
In preparation for round three, we trained both interpreters by adding additional information to the original PowerPoint presentations regarding the importance of not interjecting opinions or additional information when interpreting and interpreters self-reporting if they add information or ask questions not provided by researchers or participants, as well as asking researchers and participants for clarification related to vocabulary or context as needed. We also clarified separate roles for each interpreter, with the student researcher serving as the primary interpreter and the PTI Center staff member recording field notes and clarifying language as needed. Despite including the student researcher, participants continued to be open and candid. For example, Mariana, who had recently acquired new housing, excitedly invited the entire research team over to see her new apartment.
Transcription and translation procedures
Interview data were transcribed and translated by both professionals and the bilingual student researchers. The principal investigator who conducted the interviews provided the student researchers with training, oversight, and guidance in transcribing and translating interview content. Specifically, she developed, reviewed, and modeled procedures for transcribing data verbatim to the greatest degree possible (including side conversations, emotional nonverbal utterances, and incorrect grammar or unfinished statements; Rubin & Rubin, 2005). All interviews were transcribed in the original Spanish spoken by participants and English spoken by the interviewer and interpreters first, before they were translated fully into English. When there were phrases that defied direct translation, the closest translation possible was used while retaining the exact language used by participants in brackets (Langdon, 2009; Magaña, 2000). The primary investigator also conducted weekly meetings with the student researchers to discuss transcript formatting, ensure consistency in translation style, and address any questions regarding the context or content of the interviews. This process allowed us to reconcile differences in translations related to cultural nuances or personal experiences, as well as to understand colloquialisms or idiosyncrasies used by participants (Martinez, Marín, & Schoua-Glusberg, 2006). Due to time constraints, we paid for professional transcriptions and translations for 14 of the 22 interviews to expedite the process. We provided the professional transcriptionists the same guidelines provided to the student researchers. The student researchers also reviewed and cleaned all professionally transcribed transcripts and translations against audio recordings to ensure accuracy and consistency with our agreed-upon process.
Our analysis team was comprised of the two English-speaking primary investigators (who also have family members with disabilities), the bilingual student researchers, and a 21-year-old English-speaking self-advocate with Asperger syndrome and a seizure disorder employed through Project SEARCH (a program designed to support individuals with disabilities to gain competitive employment). The analysis team used the qualitative software NVivo to manage the data and analysis of all transcripts. Using a basic interpretative analysis approach (Merriam, 2009), each team member first open-coded two transcripts to identify general themes (Creswell & Poth, 2018). The team then met to discuss initial codes and themes, and this discussion led to the development of a preliminary codebook containing agreed-upon, well-defined themes and subthemes (e.g., school experiences, expectations for employment, barriers or challenges). The team used this codebook as a guide for analyzing subsequent transcripts and met weekly to discuss existing and emerging themes, adjust the codebook to reflect any agreed-upon changes, and examine the relations between themes and subthemes (Braun & Clarke, 2006). For this article, we combined the analysis of all interview data, regardless of the data collection stage, as similar themes emerged across interviews over time.
The team took several measures to ensure trustworthiness of data analysis. First, we carefully selected bilingual interpreters familiar with the research topic and trusted by the participants to encourage participants to share their experiences openly and honestly (Squires, 2009). Second, in order to address cultural or linguistic biases, we formed a diverse analysis team and engaged in lengthy and dynamic weekly discussions about the themes in the codebook, definitions of themes, and the influence that our individual experiences and backgrounds may have on our interpretation and analysis of the themes (Pitchforth & van Teijlingen, 2005). Third, we circulated the codebook and transcripts multiple times among team members to ensure that each transcript was coded with the most up-to-date version of the codebook. Fourth, we conducted informal member checks with participants and the end of each interview by summarizing key themes recorded in field notes, and also reviewed themes at the beginning of the second and third rounds of interviews (Brantlinger, Jimenez, Klinger, Pugach, & Richardson, 2005).
We report findings across three themes: (a) negative experiences with high school educators, (b) negative experiences with community-based service providers, and (c) positive experiences and strategies for overcoming barriers.
Negative Experiences With High School Educators
Our participants described numerous negative experiences with high school educators (i.e., special educators, paraprofessionals, school principals), including those related to (a) poor transition planning in high school, (b) distrust of educators, and (c) limited collaboration with educators.
Poor transition planning in high school
Several participants, including Regina, Mariana, Alejandra, Verónica, and Beatriz, made statements indicating that they had “never been told anything about” their family members' IEP transition goals. Further, those who were aware of postsecondary transition goals were not satisfied with the goals or family member outcomes. For example, Alejandra indicated that her daughter's goal was to “supposedly … get a job, even though [it would be only] for a few hours in the future.” Alejandra felt discouraged by the limited scope of the goal and reported that this goal was never achieved.
Similarly, many participants reported limited knowledge of the transition services educators provided to their family members. For example, Montserrat noted that her son's IEP “said only that they would train him … for example, in laundry, in making popcorn and things like that.” However, the educators never indicated “that they're doing anything concrete to teach him.” When asked what support educators provided to successfully transition individuals out of the school system, the most common response was “nothing” or that participants received notice of termination of school-based services. Other participants were told that their family members “would not qualify for any other programs” after high school. For example, Sofi indicated that her son's educator said “that once he was out of high school, [government entities] could no longer do anything for him because he didn't have his Social Security.” Most participants indicated that educators generally did not share information about services available after graduation, as evident by comments such as Verónica's: “You know what? I don't even know who to talk to. I don't even know where to start or if it's a good idea or not.”
Distrust of educators
Participants noted that distrust of school educators emerged when their family members did not receive appropriate educational services. Multiple participants speculated that educators did not provide honest information about family member needs (e.g., eloping, self-harm, self-care needs) because, as Ana put it, “they didn't want to put a person” with them “because there wasn't any money” to provide that level of support. Providing perfunctory student evaluation information without evidence of performance also discredited educators. For example, Yessenia noted, “It worries me that he still doesn't know how to write his name … and [he] gets all As.” The way in which Beatriz summarized her perceptions of her son's educators also reflected the sentiments of many participants: “I feel like they only care about their salaries … they don't like to deal with kids.”
Evidence of physical or emotional harm, such as leg braces “soaked in sweat” from not being removed at school, bodily damage from poor positioning, and a family member coming home with menstrual pads “dirty from all day” incited fear and significant distrust among participants. Majo described fearing for her son's safety at school: “Now I have to be checking him every time I pick him up. He comes all scratched, bites, and big bruises and they don't notice it because they have so many individuals.” Beatriz and Ana also described how their family member would “cry and cry with so much sadness” as a result of excessive scolding by educators and witnessing educators abusing other students at school. According to Beatriz, one teacher was arrested for “mistreating [students] … they did arrest her, they put her in jail for only five days and they took away her license.”
Feeling blamed, misunderstood, or discriminated against by educators also compromised trust. Several participants such as Ana and Beatriz felt that “schools did not like” when they offered suggestions or advocated for appropriate services or support, which diminished the family's overall participation in transition planning. Verónica described feeling frustrated with educators punishing her son without informing or consulting with her so that she could help shape his behavior or advocate for him: “I hope they're keeping me up to date on his behavior … if they don't tell me, how am I supposed to know?”
Some participants also believed that educators inappropriately or unjustly criticized their parenting. Majo reported that educators consistently “were focused on seeing if I was abusing” her son after she “frequently complained” about the quality of her son's educational programming. Yessenia recounted how a school administrator terminated her son's bus service after she repeatedly failed to meet him at the bus stop, even after she explained that she was sick (and was soon after diagnosed with a brain tumor requiring emergency surgery). She said that, despite a previously positive relationship with educators, the school administrators “didn't listen” to her: “Not a single moment did I feel that they understood me.” Once the principal learned of her surgery he told her, “Oh, now we understand why that had happened,” but, she explained, “at that point, what for?”
Limited collaboration with educators
Although some participants indicated that they were not invited to meetings, others reported attending but not fully contributing to meetings because they did not feel valued, did not believe that educators would accept their input, or were not invited to contribute. Many participants who experienced negative interactions, such as those described by Majo and Yessenia in the previous section, eventually stopped attending meetings altogether. Several participants also described not following through with steps discussed in IEP meetings because they disagreed with the goals and transition services. For example, when presented with a potential volunteer opportunity for her son (greeting customers at Sam's or Wal-Mart with a communication device purchased by the school), Sofi “said it was fine” during the meeting, but “didn't look into it any further since he doesn't like [his] [wheel]chair … and he would get frustrated.” She went along with the educator's decision at the meeting because she did not feel comfortable disagreeing with the educators and did not believe they valued her opinion. Other participants indicated that they did not ask questions during meetings with educators, including questions about available resources, school services, and procedures, or how to help develop student skills at home due to feeling uncomfortable or overwhelmed. For example, Yessenia described wanting help her son “to learn about danger,” saying “… at the stove I tell him—stop it—when he is about to lean up against it. I don't even give him a chance to learn because it makes me scared.” However, Yessenia did not address these concerns with her son's educators because the American school system was “just all new” for her. Beatriz also believed that some educators “won't give information” to families “even if they do know [the answers] because it's not their job … I was looking for the consulate offices and they would tell me, ‘I don't know, I don't know. I don't know.'” Regina, Sofi, Alejandra, and Beatriz also consistently cited not receiving interpretation services or translated documents, even when they requested “all paperwork in Spanish,” which prevented them from collaborating with educators during transition planning.
Negative Experiences With Community-Based Service Providers
Participants described negative experiences with community-based service providers (e.g., case managers, vocational rehabilitation, social workers, personal care assistants, Social Security office staff) that influenced their access to community services, including (a) issues related to citizenship, (b) language differences between participants and service providers, (c) service provider attrition and ineffectiveness, and (d) limited knowledge of available services.
Issues related to citizenship
Many participants, including Montserrat, Alejandra, Sofi, and Verónica, “never asked for help anywhere,” in part, because they and/or their family members not did not have Social Security numbers or “residency.” As a result, they believed that there were no services available to them or that asking for support would result in deportation. Some participants indicated that they would not attempt to access or even inquire about “some kind of assistance,” fearing that the government would not award immigration status to people they perceived as “a hardship to the country.” However, issues surrounding citizenship were not limited to those who lacked legal status. Ana described her experiences with a case manager who repeatedly asked for proof of citizenship each time they would meet (even though she already had multiple copies of Ana's “papers”) until one day the staff person finally “lost” the original copy of Ana's naturalization certificate.
Language differences between participants and service providers
Participants commonly described a paucity of Spanish-speaking service providers in the community as a barrier to accessing services. For example, when asked about securing services for her son, Sofi explained that she had not yet successfully communicated with the service agency because they did not have a bilingual staff member: “She hasn't answered me. Could it be because I call very late? ... The reason I call at those times is because since she doesn't have an interpreter, and I don't speak English, [I wait] so my daughter can call.” Similarly, Alejandra indicated that she believed that her daughter with disabilities was not receiving appropriate services because she, as the parent, didn't “speak a sufficient level of English … I see other families that speak English well, and I see that their kids are already accommodated in places.” Regina described her experiences not knowing if she was entitled to an interpreter in community-based services after high school: “They try. I do understand about half of what [the case manager] says to me … If she knows that I hardly speak English well, I think she needs to bring [an interpreter], right?”
Service provider attrition and ineffectiveness
Service provider “changes, for whatever reason,” also emerged as a common barrier to successfully accessing needed services. Sofi noted that turnover was “… hard because then you have someone that doesn't know your child.” Sofi also provided a specific example of how staff turnover impacted her son's access to services and general trust in professionals:
Like the other day, one [social worker] came here and had the meeting … the social worker said ‘I am going to see what I can do so that he can get his visa' and she left the following week … she was going to look for help for me, but she left….
Majo described issues related to a paucity of reliable male personal care assistants “because, you know, they don't really have male staff.” At one time she felt excited that her son was going to work with a male assistant who could help him “with the bathroom situation.” However, excitement turned to disappointment after she met him once and “never saw him again.” Other participants felt frustrated when a lack of service providers resulted in family members being placed on lengthy waitlists for employment or direct support services. Some participants, including Beatriz, also noted that staff were “very rude” to them or, as Regina stated, were generally “not very open to working with families with disabilities.” Ines described her disappointment after staff from vocational rehabilitation informed her that her son was “too disabled” to qualify for services: “I'm going to this meeting and there's a possibility you know, that he is going to be able to get a job and they're going to help me, and then … it's just like a letdown.”
Limited knowledge of available services
Systemic barriers related to citizenship, language, and service providers resulted in participants receiving limited information about available resources and supports. Participants frequently reported confusion or misinformation regarding (a) the nature of their family member's disability, (b) the relationship between guardianship and citizenship, (c) eligibility requirements for services, (d) policies and procedures for accessing services (e.g., participants being told to wait until 6 months before graduation to apply for vocational rehabilitation), and (e) processes for how to address questions and concerns about available resources. Alejandra noted that, even when caregivers were aware of services, securing and accessing them proved difficult because there were “so many papers,” making it difficult to “know which ones are which.” All participants were familiar with the local PTI Center, a community resource to support families of children with disabilities. The PTI Center had a few Spanish-speaking staff and was highly regarded by the community for providing accessible, reliable information and unconditional support to families. However, outside of the PTI Center, participants such as Ana did not “know any other associations that try to help people.”
Positive Experiences and Strategies for Overcoming Barriers
Participants described four primary strategies for overcoming barriers to supporting their family member with a disability: (a) developing trusting partnerships, (b) locating information and resources, (c) connecting with family and community, and (d) maintaining high expectations.
Developing trusting partnerships
Despite noting barriers, participants described strategies for staying “in touch” with educators, which sometimes included participants “demand[ing] more things” for their family members. For example, Verónica described asking educators to keep her “up-to-date” on her son's behavior instead of only reporting misbehavior at annual meetings and punishing her son without her knowledge. Araceli described how she developed a win-win situation with her son's educators by uncovering their needs (e.g., assembling classroom materials) and teaching her son skills to meet those needs. Araceli also described a positive experience with her son's educators to help him secure competitive employment after graduation. Specifically, the special educator “sent someone to fill out an application” and help him interview for a position at a community grocery store. Araceli supported this effort by collaborating with the educator to complete the application for her son and speaking “directly with the managers” to facilitate him obtaining the position. She went on to describe the importance of a “fifty-fifty” relationship between parents and educators: “[He] would have been left halfway on the road. The school can give you the best opportunities. The school can have the best teachers, but if you don't work hand in hand, nothing can be achieved.”
Some participants reported the ways in which professionals earned their trust, such as “motivating kids forward,” “demand[ing] a lot” from individuals, and “providing help” during times of crisis. Regina described how, after years of broken relationships with school professionals, one of her son's educators developed postsecondary goals and action steps related to truck driving, including “help[ing] him get a manual for a commercial driver's license,” and teaching him how to read maps. This goal was especially relevant for Regina's son because truck driving was something “he's always wanted to do” because he “admires his uncles” and father who drive trucks. For Regina, the development of this goal and clear action steps demonstrated genuine care and commitment to her son's interests and well-being.
Participants also recalled specific instances with community-based service providers who made great efforts to connect with families. Sofi explained how, after she “wouldn't answer the phone” when a new social worker called because of excessive turnover in the past, the social worker “got in touch” with Sofi through people she trusted in the community. Sofi indicated that the social worker “told other people to let me know that she wanted to talk to me—to please answer the phone.” This display of commitment prompted Sofi to reengage with the agency. Sofi also described one “very demanding” social worker who “helped out a lot” and showed concern for her family: “He came to my house. I had very low circulation for the house to be cool and he would tell me, ‘You need to have more air because it needs to be cool'” for her son. Even though Sofi felt “scolded” by the social worker, she appreciated and complied with his suggestion “because he was concerned” about her son. Other participants also identified this particular social worker by name as being someone who was supportive and made efforts to connect with and support Hispanic families in the community. Participants also appreciated service providers inviting them to meetings, asking them about the best ways to work with their family members, and inviting caregivers to serve in leadership roles (e.g., explaining the Affordable Care Act to other families).
Locating information and resources
Although participants consistently indicated needing information, they also discussed strategies used to get “information” about what they “should do.” As Araceli put it, “barriers, they will always exist, but that's why one should learn where we can find information.” One strategy Araceli used to stay informed was attending training courses and workshops: “I sometimes tell others that [raising a child with disabilities] is like a business in the sense that you should invest time ….”
Verifying information across extended family members, neighbors, and other caregivers of children with disabilities was another strategy participants used to learn about school services, service eligibility, immigration processes, and other related information (e.g., education and employment-related rights and responsibilities). For example, after speaking to other families about Social Security, Montserrat “react[ed] differently” about seeking resources because she learned that individuals with disabilities “can work without losing their Social Security benefits.” Participants also offered other suggestions for gaining information, such as when Sofi “just showed up” at service agencies and waited until someone addressed her needs.
Trusted professionals in the community also helped participants access resources. For example, after Sofi's son turned 18 and his “support ran out,” his pediatrician said, “Don't worry … I am going to help you. If he is 80 years old, I am going to help you … even if he doesn't have insurance.” This physician also helped her locate affordable assistive technology for her son. For Mariana, representatives from the juvenile justice system initiated support for her family after conducting a home visit. Once Mariana explained that her family “would sleep in only one bed” in the one-room dwelling, and the juvenile justice staff saw that the “plumbing didn't work,” they instructed Mariana to apply for assistance from a local Catholic charity. Mariana explained that she didn't “have papers,” but the staff assured her that her citizenship was “no problem.” Based on their demonstration of care for the family (instead of focusing on her son's negative behavior or blaming her for the family's living conditions), Mariana took them at their word and was approved for a rent-free furnished apartment for 2 years.
Connecting with family and community
Many participants such as Sofi and Araceli felt that they could “count on the family to take care of” and “look out for” their family members with disabilities. For example, Sofi described how important it was when her sister helped her children “calm down so they were able to understand some of the situation” when she was temporarily incarcerated for driving without a license. Further, Sofi's close family friends taught her how to navigate around policy structures that were inhibiting her from gaining a driver's license in her state. Community members also provided emotional support and information about resources to participants. For example, Araceli's son experienced success at a local employer after high school because his coworkers were committed to “monitoring him and helping him.” She noted that her son's “charisma” made her feel that he is “safe when he is at work because he's just one more worker.” This support extended beyond the work day. In fact, his coworkers began including him in social events outside of work.
Maintaining high expectations
Participants also acknowledged the importance of maintaining high expectations and a positive outlook to ensure, as Araceli stated, that their family members with disabilities are “able to integrate into society like any other normal individual.” Positivity helped participants cope with stressful circumstances, such as affording their family members more independence to attend social events and take public transportation. In addition, Majo explained how raising “a kid with special needs is very stressful” between “medications, problems in school and [on] the job—it's a lot of stress.” Majo maintained the expectation for her son to “try … to be independent” so that “he doesn't cause me stress anymore.”
Maintaining high expectations motivated participants to teach their family members life skills such as cooking (e.g., measuring, stirring, washing), taking public transportation, managing time (e.g., how to use a phone alarm), and advocating for themselves at school, work, and in the community. Further, as Ines noted, “seeing examples” of people with disabilities working and living in the community helped participants develop high expectations. Montserrat also shared that seeing positive examples helped her develop a “clearer vision of what could happen” for her own children and a more positive outlook for life after high school. Finally, Araceli noted that professionals “interested in making sure that people know about resources” and who personally invited families to workshops resulted in feelings of gratitude and high expectations for positive postschool outcomes.
The purpose of this study was to understand the positive and negative experiences of Hispanic caregivers as they support their family members with disabilities achieve positive postschool outcomes, including competitive employment. Caregivers play many supportive roles, including decision makers, collaborators, teachers, and advocates. As such, their involvement is important to young adults achieving positive postschool outcomes (Hirano & Rowe, 2016). Our research revealed that Hispanic families faced numerous barriers to supporting their family members with disabilities, resulting from negative experiences with both educators and community-based service providers.
Participants indicated a need for information about family member transition plans and available resources. They reported suspecting misinformation (e.g., about student progress) and uncertainty about other information (e.g., how the use of social services influenced obtaining a visa). Participants also placed far more trust in their neighbors and other community members than educators and service providers, for better (e.g., finding assistive technology, housing) or worse (e.g., proliferation of misinformation). Participant's negative experiences reflected common barriers experienced by families, including poor transition planning (Hetherington et al., 2010; Timmons et al., 2011), communication barriers (Hetherington et al., 2010), limited collaboration among families and professionals (Francis et al., 2014), parents feeling criticized or discredited by professionals (Cooper, Riehl, & Hasan, 2010), limited knowledge of resources and supports (Francis et al., 2014), and high staff turnover rates (Hatton et al., 2001).
Further, elements of effective transition planning include student-directed transition planning, high expectations for employment, work experiences, family-professional partnerships, and collaboration with community-based service providers (Wehman, 2011). However, our findings indicate that educators were generally not engaging in effective transition planning and were often out of compliance with federal education laws by failing to provide translation and interpretation services to fully support parent participation in the educational and transition planning process. In addition, IDEIA and the Workforce Innovation and Opportunity Act (WIOA; 2014) call for interagency collaboration among school educators and community-based service providers. However, our participants experienced difficulty communicating with service providers and reported that interagency collaboration was nearly nonexistent.
Many families from nonmajority race/cultural backgrounds experience these and other barriers to their participation in the transition process for their family members (Greene, 2014). For example, many participants reported many systemic barriers that are consistent with the literature, such as a lack of interpreters and translated documents (Pang, 2011); microaggressions (e.g., professionals continually asking for proof of citizenship, overpunishing students of color; Dávila, 2015); institutionalized discrimination (e.g., professionals devaluing non-Western forms of caregiver involvement and making assumptions about immigration status based on caregiver first/preferred language and ethnicity; Cooper et al., 2010); and policies that do not reflect the needs of Latino families (e.g., a focus on student independence versus family interdependence; Kalyanpur & Harry, 2012). These systemic barriers resulted in participants fearing accessing resources, being uninvolved in transition planning, and primarily obtaining important information via hearsay in their community.
Despite the barriers experienced by participants, our findings indicated that professionals may develop or repair relationships by building trust with caregivers through demonstrations of commitment to student and family well-being and by becoming a reliable source of support. Participants described numerous strategies they used to overcome systemic barriers consistent with existing literature on family-professional partnerships during transition, including (a) developing reciprocal partnerships with professionals (Turnbull, Turnbull, Erwin, Soodak, & Shogren, 2015); (b) gathering information to support their family members with disabilities (Hirano & Rowe, 2016); and (c) sustaining high expectations (Mann, Moni, & Cuskelly, 2016).
This study also adds to the literature on transition and family-professional partnerships by: (a) contributing to the scant literature on family-professional partnerships in high schools and with community-based service providers, (b) identifying specific barriers to Hispanic caregivers participation/engagement during transition, (c) providing strategies to effectively partner with and support Hispanic families, (d) providing real accounts of examples where discrimination in school systems and community service agencies is perpetuated against Hispanic individuals with disabilities and their families, and (e) furthering an understanding of the perspectives and experiences of a population that is overwhelmingly underrepresented in the research (Aceves, 2014; Achola & Greene, 2016). Further, this study corroborates findings of systemic barriers from over 25 years of research that continue to go unaddressed, including Hispanic caregivers having little or no meaningful input in their family member's educational planning in school; schools lacking interpreters and translators; and Hispanic families feeling discriminated against by professionals and, as result, avoiding interactions with them (Aceves, 2014; Achola & Greene, 2016; Burke, 2017; Correa & Tulbert, 1993). Finally, this study contributes to the literature by highlighting the importance of community-based interventions, dispelling myths related to service provision and citizenship status, and providing a safe space for undocumented immigrant caregivers to ask questions related to immigration and school and community-based services.
This study has four primary limitations. First, all participants were female mothers and one aunt caregiver from one town in a Midwestern state. Although qualitative research is not intended to be generalized across populations (Creswell & Poth, 2018), our participants have unique experiences and perceptions, which may differ from those of other family members, professionals, and young adults with disabilities. Further, we did not verify if the educational level reported on Table 1 reflected the education of participants themselves rather than others living in the family home, or if the educational experiences occurred within or outside of the United States. This information would have afforded a deeper understanding of the influence of participants' educational experiences on their interactions with educators.
Second, not all participants were interviewed at all three points in time due to limited funding and a tight timeline for conducting interviews. This prevented a comprehensive examination of changes over time. Third, although interpreters asked clarifying questions throughout interviews, we did not conduct systematic member checks at the end of each interview. However, we did start second and third rounds of interviews by summarizing content and reviewing key themes from previous interviews with participants who engaged in these rounds of interviews to offer them the opportunity to correct or expand on information. Fourth, there are many challenges associated with accurate interpretation and translation of cross-cultural research (Pitchforth & van Teijlingen, 2005; Squires, 2009). In this study, one interpreter providing their own responses during the first round of interviews is a notable limitation. We sought to address this and additional potential limitations in several ways, including (a) selecting bilingual interpreters familiar with the research and trusted by participants; (b) training and retraining interpreters and translators; (c) selecting translators with differing cultural backgrounds to address linguistic nuances; (d) creating a dynamic data analysis team; (e) checking all transcripts for accuracy and consistency; (f) omitting all information independently provided by the interpreter during round one of interviews from our analysis; and (g) meeting regularly as a research team to ensure consistency in translations and address potential biases in analysis. However, financial and time constraints prevented us from conducting back-translations, or one individual translating documents from a source language to a target language and a second individual translating it back into the source language before comparing the two documents for discrepancies (Brislin, 1970). This process would have ensured translation accuracy and increased the trustworthiness of the translated data in English presented in this article.
Implications for Practice
Participants indicated a need for information about their family member's transition plan, available resources, and eligibility for supports and services. They also reported feeling more comfortable seeking information from their neighbors and other community members over educators and service providers. Given that both IDEIA (2004) and Plyler v. Doe (1982) support equal access to public education for all students, regardless of their immigration status or the status of their caregivers, educators and service providers should collaborate with trusted community organizations to dispel myths and disseminate accurate information to families. This is especially important given recent policies proposed by the federal government, such as rescinding the Deferred Action for Childhood Arrivals (DACA) program—political acts that result in fear and underuse of available resources among many immigrants.
In addition, our findings indicate that participants reported that they were not engaging in effective transition planning as outlined in IDEIA (2004) or that transition planning was not characterized by evidence-based practices such as student-directed planning or collaboration (Wehman, 2011). These findings signify that educators and community-based service providers are in need of (a) accurate information about family rights and school responsibilities, (b) resources to comply with interpretation and translation requirements, (c) professional development on evidence-based transition practices, and (d) collaborative relationships with service providers and other community resources. In addition, service providers and educators could collaborate to secure interpreter or translation services from community or state organizations such as the department of family services or community English language instructors (National Child Traumatic Stress Network, 2006) to enhance communication and interagency collaboration. Further, service providers and educators can collaborate to host parent-led workshops for Hispanic families to enhance their knowledge of special education services, transition planning, community resources, and strategies to develop the skills of their young adult in the home and community (Aceves, 2014). Moreover, professionals should consider attending community events or eating at local restaurants to become more recognized and trusted by the populations they serve.
Implications for Future Research
There is a paucity of cross-cultural research in special education and transition (Aceves, 2014; Achola & Greene, 2016), indicating a need for more studies that focus on the experiences of populations representing diverse races, ethnicities, and languages. Without these perspectives, policy makers who use research to make important decisions are more likely to create systems that do not reflect the needs and preferences of underrepresented populations, which can ultimately lead to continued marginalization. Further, when conducting cross-cultural research, diverse perspectives help address implicit bias among researchers (Hole, 2007). However, there is limited information on how to appropriately conduct cross-cultural research in a way that supports trustworthiness of data and meaningful outcomes (Magaña, 2000). Although this article describes efforts to establish trustworthiness in both how we collected and analyzed data, it is not without its limitations and there is a need for additional literature that richly describes complications and strategies for conducting trustworthy cross-cultural research.
Moreover, future research is needed to explore the experiences and perceptions of various family members (e.g., fathers, siblings, close family friends), professionals (e.g., special and general educators, administrators, transition specialists, community service providers), and, importantly, individuals with disabilities to inform policy and practice. For example, many of Araceli's experiences differed from other participants, as she described attending numerous community workshops to gain information about available supports and developing a “fifty-fifty” partnership with educators to help her son achieve competitive employment after graduation. Several factors may explain why some of Araceli's experiences contrasted from the other participants, including that she was a U.S. citizen, spoke some English, and was a married stay-at-home mom. Future case study research on “outliers” like Araceli could provide a deeper understanding into key factors that facilitate or prevent positive family outcomes.
Although our participants offered some solutions and strategies, future research should explore additional approaches for addressing systemic barriers identified in the literature and by participants in this study. Such research may begin to tackle barriers by investigating how existing educational and social service structures and systems marginalize or do not otherwise support Hispanic families and also how the strategies offered by our participants influence larger populations. For example, researchers could build off of trust established among community members to develop a parents-as-trainers program (Trainor, 2010) to strengthen family support networks and provide families with resources and strategies in their native language and in ways that are more directly applicable to their families. Further researchers could also conduct case study research on the rapport-building strategies and successful outreach efforts of trusted community partners, such as the PTI Center described in this study, to meaningfully impact the ways in which professionals can develop trusting partnerships with marginalized families.
Finally, future research must engage in research-to-practice by investigating inservice and preservice education programs related to (a) critically examining how existing social structures, policies, beliefs, and assumptions might disserve students and families (Hollins & Torres Guzman, 2005); (b) developing trusting partnerships with individuals from differing cultural and linguistic backgrounds (Lu & Gatua, 2014); and (c) employing strategies for delivering information and services in a way that is responsive to cultural, linguistic, and familial needs and preferences (Aceves, 2014). This is especially important as diversity continues to grow in the United States and the cultural norms and values that shape American schools might not be shared by families with different expectations and beliefs (Kalyanpur & Harry, 2012).
The authors produced this document under the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) Grant No. H133G130261, Assessing Family Employment Awareness Training (FEAT); University of Kansas IRB number STUDY00000519.