879069 RSQXXX10.1177/8756870519879069Rural Special Education QuarterlyFrancis et al. research-article2019 Research Reports Facing Double Jeopardy: The Transition Experiences of Latina Family Caregivers of Young Adults With Disabilities Living in a Rural Community Rural Special Education Quarterly 1–18 © Hammill Institute on Disabilities 2019 Article reuse guidelines: sagepub.com/journals-permissions https://doi.org/10.1177/8756870519879069 DOI: 10.1177/8756870519879069 journals.sagepub.com/home/rsq Grace L. Francis, PhD1 , Judith M. S. Gross, PhD2, Carlos E. Lavín, MA1, Lu Ankely Casarez Velazquez, BA3, and Nicholas Sheets, MS4 Abstract The transition for young adults with disabilities from high school to gainful employment is often difficult. This transition is even harder for students from minority or marginalized backgrounds, including young adults who identify as Latino. As the Latino population increases in the United States, it is imperative that the transition from high school to employment becomes more effective for Latino young adults with disabilities. Using a portion of Bronfenbrenner’s Model of Human Development as a framework, we explore the experiences of Spanish-speaking Latina caregivers of young adults with disabilities to better understand the contextual and environmental factors that influence family systems as young adults with disabilities prepare to transition from high school to adulthood. Our findings highlight important factors in the micro-, meso-, exo-, and macrosystems, including the importance of family and community, distrust of authority, and the impact of discrimination. Implications for practice and future research are discussed. Keywords Latino, Hispanic, parent, disability, transition/employment, rural special education The aim of transition planning in high school is to prepare students with disabilities to achieve the four outcomes of federal disability policy: independent living, economic selfsufficiency, full participation, and equality of opportunity (Turnbull, Stowe, & Huerta, 2007). According to the Individuals with Disabilities Education Improvement Act (IDEIA, 2004), transition services are a “coordinated set of activities . . . focused on improving the academic and functional achievement of the child with a disability to facilitate the child’s movement from school to post-school activities . . .” (Sec. 1401[34]), such as employment, postsecondary education or training, and independent living. For the young adults to achieve these outcomes following graduation, it is crucial for family caregivers (e.g., parents, guardians, siblings, extended family members) to be involved throughout the transition planning process (Achola & Greene, 2016; Francis, Gross, Magiera, et al., 2018; Mann, Moni, & Cuskelly, 2016). However, numerous barriers stymie effective family caregiver involvement during transition planning, including educators feeling unsure how to engage family caregivers (D. C. Martinez, Conroy, & Cerreto, 2012), expectations for passive caregiver involvement or exclusion of family caregivers from transition meetings entirely (Mueller & Buckley, 2014), and caregivers lacking information and resources to support their family members with disabilities after graduation from high school (Achola & Greene, 2016; D. C. Martinez et al., 2012). In addition, family caregivers have reported that their interactions with and the attitudes of professionals make them feel disjointed from the transition team, isolated, and distrustful of professionals (Defur, Todd-Allen, & Getzel, 2001). Living in rural communities presents additional barriers to successful transitions for students with disabilities. For example, research indicates that there are often fewer employment opportunities in rural communities, thus 1 George Mason University, Fairfax, VA, USA Indiana University, Bloomington, USA 3 The University of Kansas, Lawrence, USA 4 University of Miami, FL, USA 2 Corresponding Author: Grace L. Francis, Assistant Professor of Special Education, College of Education and Human Development, George Mason University, Finley Building 216, 4400 University Drive, MSN 1F, Fairfax, VA 22030, USA. Email: gfranci4@gmu.edu 2 reducing the likelihood of individuals with disabilities securing integrated competitive employment after graduation (Collet-Klingenberg & Kolb, 2011; Evans-Thompson, Booth, & Liles, 2016). Furthermore, many rural districts experience difficulty recruiting and retaining highly qualified special educators and administrators (Berry, Petrin, Gravelle, & Farmer, 2011). In addition, teachers are often unprepared to equip students with disabilities with the necessary skills needed in the changing rural labor market (e.g., use of technology; Lindstrom, Doren, Flannery, & Benz, 2012; Young, 2013). Teachers and service providers in rural communities often report having limited resources such as vocational services, therapies, interpreter services, or public transportation to support meaningful transition of students with disabilities from school to adulthood (Castillo & Cartwright, 2018; Collet-Klingenberg & Kolb, 2011; Evans-Thompson et al., 2016). In addition, rural communities experience higher rates of poverty (Irvin, Meece, Byun, Farmer, & Hutchins, 2011), which can limit access to services that are available in neighboring communities a distance away. Finally, many rural communities are experiencing substantial growth in Latino populations (J. Johnson, & Strange, 2009), and schools are generally not prepared to ensure the engagement of culturally and linguistically diverse families (Achola & Greene, 2016; Barrio, 2017; Gothberg, Greene, & Kohler, 2019; Ramirez, 2003). Despite IDEIA mandates regarding parent participation and the demonstrated importance of family engagement on young adult outcomes (Massey & Sánchez, 2010), research indicates that immigrant family caregivers, including those from Latino backgrounds, often participate in educational meetings at lower rates than do their Caucasian, Englishspeaking peers (Cooper, Riehl, & Hasan, 2010; McLeod, 2012). However, research also indicates that Latino family caregivers are highly invested in the success of their young adults and that multiple barriers including language barriers (Defur et al., 2001; Francis, Gross, Lavín, et al., 2018), overrepresentation of English language learners in special education (Barrio, 2017), logistical issues (e.g., lack of transportation or child care; Defur et al., 2001), discrimination, stigma, power imbalances, and microaggressions prevent effective involvement during transition planning (Francis, Gross, Lavín, et al., 2018) prevent them from actively participating in transition planning meetings for their young adults with disabilities. Furthermore, cultural differences between Latino families and professionals from dominant U.S. cultures, such as varied conceptualizations of “independence,” “interdependence,” and the cultural value of “familism” (e.g., prioritizing family needs over individual needs; Stein, Gonzalez, Cupito, Kiang, & Supple, 2013) create additional challenges to family involvement, family–school collaboration, and attainment of positive transition outcomes for young adults (Achola & Greene, Rural Special Education Quarterly 00(0) 2016; Povenmire-Kirk, Lindstrom, & Bullis, 2010; Stein et al., 2013). These findings are troubling, considering the importance of trusting family–professional partnerships among families who are unaware of available resources, policies, procedures, rights, and responsibilities associated with U.S. school and disability service systems (Haines, Summers, Turnbull, & Turnbull, 2015). Existing research on how best to support culturally and linguistically diverse families includes limited information on (a) effective practices to support family involvement during transition planning (Morningstar & Mazzotti, 2014); (b) how professionals can effectively partner with immigrant families (Lu & Gatua, 2014); (c) the experiences of Latino families during the transition process (Francis, Gross, Lavín, et al., 2018); (d) the general experiences of immigrant and non-majority race/culture families across the life span, including transition (Samuel, Hobden, LeRoy, & Lacey, 2012); and (e) how teachers and service providers can effectively partner with families living in rural communities with limited resources (Witte & Sheridan, 2011). This lack of information on the involvement of culturally and linguistically diverse families during transition, the negative transition experiences of immigrant families, the disproportionately lower rates of achievement of transition goals among Latinos with disabilities, and differing cultural perceptions of what qualifies as “positive student outcomes” warrants an investigation into the lived experiences of Latino family caregivers who have young adults with disabilities living in rural communities. In this study, we explored the experiences of rural Latina caregivers of young adults with disabilities to better understand the contextual and environmental factors that influence their family systems as the young adults prepare to transition from high school to adulthood. Specifically, our research question for this study was as follows: What factors present barriers or facilitate opportunities for Latina caregivers living in a rural community to support their young adults as they transition from high school to adulthood? We use Bronfenbrenner’s (2005) Process–Person–Context–Time (PPCT) model of human development to aid us in this purpose. Bronfenbrenner’s Model of Human Development Urie Bronfenbrenner’s PPCT model highlights the role that various factors play in human development (Bronfenbrenner, 2005). The PPCT model comprehensively identifies various components that influence an individual’s development across the life span, including personal characteristics, key stakeholders, and environmental factors. Multiple researchers have used this model to examine the experiences of Latino immigrants living in the United States (Jensen, 2007; Paat, 2013; Vélez-Agosto, Soto-Crespo, VizcarrondoOppenheimer, Vega-Molina, & García Coll, 2017), as well 3 Francis et al. as the experiences of families and individuals with disabilities living in rural communities (Bauer & Dolan, 2011; Ben-David & Nel, 2013). Using this model to examine the experiences of Latina caregivers of young adults with disabilities living in rural communities may provide insight into unique ecological factors that present barriers or facilitate opportunities for this population. In the PPCT model, “Process” involves the nature and direction of regular and reciprocal interactions between a person and the individuals, objects, and other aspects of their environment, over time. “Person” in this model references how an individual’s characteristics (e.g., race, gender, skills, opportunities, temperament, and ability to change processes) influence their development. “Context” involves an individual’s ecological environment (e.g., the nested micro–macro systems that surround an individual), and “Time” refers to the influence of changes over time on an individual’s development (e.g., aging, transition). For the purpose of this article, we organized our findings in the Context-specific micro-, meso-, exo-, and macrosystems. We elected to organize our findings in this way because, although we do not seek to test Bronfenbrenner’s theory, this model will support our ability to identify how structures found in each Contextspecific system interact and influence family systems during a young adult’s transition to adulthood. Exosystem Microsystem Method Structures in the microsystem come in direct and frequent contact with the individual at the center of these nested systems. Examples of structures in the microsystem include linguistic systems and symbols, as well as individuals such as families, educators, peer groups, and coworkers (Bronfenbrenner, 2005). Family members are often considered the most influential structure in this system, which is especially true for individuals with disabilities who rely on their families for lifelong guidance and support (Lindstrom et al., 2012). Educators and direct support providers (e.g., job coaches) also have a profound impact on young adults with disabilities through transition planning and service provision (Timmons, Hall, Bose, Wolfe, & Winsor, 2011). All research was approved by the Institutional Review Board prior to initiation. The principal investigators were White, English-speaking, women employed at a public university in the Midwestern state in which this study occurred. Both principal investigators had backgrounds as special education teachers and both had family members with disabilities. In addition, although the investigators were not from the community in which study participants lived, both investigators also had experience living in rural communities in the United States. Both investigators also held research interests related to improving competitive employment and community inclusion among individuals with significant disabilities and increasing family quality of life. These investigators led all research material development, recruitment efforts, interpreter and analysis team training, and data collection and analysis procedures. As a result, to address potential biases, cultural responsiveness, and ensure reflexivity, the investigators took several measures to ensure trustworthiness described later in this section. Mesosystem The mesosystem involves connections and interactions among microsystem structures (Bronfenbrenner, 1979), such as interagency collaboration between school and service agency professionals and collaboration between family members and professionals. Collaboration and coordination between microsystem structures are often essential for creating positive post-school outcomes for young adults with disabilities. These structures are most effective when they share information, opportunities, and responsibilities related to the advancement of the young adult with disabilities (Francis, Gross, Magiera, et al., 2018). The exosystem involves connections and interactions in environments that do not directly interface with, but ultimately have an indirect influence on an individual at the center of the system (Bronfenbrenner, 1979). A common example of an exosystem structure includes the workplace of a parent. In this example, an individual has no direct contact with their parent’s workplace, but the influence of a stressful day on the parent may likely influence parent level of patience in the home. For young adults with disabilities, additional exosystem structures may include Social Security, vocational rehabilitation, and community employers (Gardiner & Kosmitzki, 2011). These structures indirectly influence young adults by providing resources and opportunities that an individual can use to obtain health care or employment. Macrosystem Macrosystem structures have bidirectional relationships with all of the other systems (Bronfenbrenner, 1979). Macrosystem structures include social values, norms, customs, beliefs, opportunities, and bias. Stigma and discrimination are macrosystem structures that are especially relevant to individuals in minority or marginalized populations. Participants To recruit interview participants, the principal investigators partnered with the state Parent Training and Information (PTI) Center in a Midwestern state and 15 school districts/ special services cooperatives in rural, suburban, and urban areas and to distribute surveys about their employment 4 Rural Special Education Quarterly 00(0) Table 1. Participant Demographic Information. Pseudonym Inés Mirabel Yessenia Montserrat Regina Alejandra Araceli Sofi Beatriz Ana Mariana Majo Verónica Young adult primary disability Intellectual disability Intellectual disability Intellectual disability Intellectual disability Intellectual disability Intellectual disability Intellectual disability Cerebral palsy Cerebral palsy NR Visual impairment Autism ADHD Young adult age 23 24 18 18 17 20 23 25 19 NR 14 24 14 Highest level of education of guardians in household Some high school Some high school Some high school Some high school Some high school Some college High school diploma High school diploma High school diploma NR High school diploma High school diploma NR Annual household Individuals living income (US$) in the home 35,000–44,999 <15,000 25,000–4,999 35,000–44,999 25,000–44,999 15,000–24,999 45,000–54,999 <15,000 NR NR <15,000 NR NR 5 3 3 4 2 5 6 3 NR 1 6 3 5 Number of interviews 1 1 1 2 2 3 3 3 1 1 3 1 1 Source. Adapted from Francis, Gross, Lavín, Casarez Velazquez, and Sheets (2018). Note. Beatriz invited her sister, Ana to her interview. Ana often provided support to Beatriz’s family, including her nephew with a disability. NR = no response; ADHD = Attention Deficit Hyperactivity Disorder. expectations for competitive employment and knowledge of employment resources to families with transition-age young adults with disabilities. Surveys were distributed in both English and Spanish, and included a question asking respondents if they would be willing to participate in interviews to discuss their experiences supporting their family member with a disability to attain employment. In an effort to better understand the experiences of Latino families, the principal investigators interviewed 13 Latina family caregivers of young adults with disabilities aged 14 to 25 years who volunteered via the survey. Interview participants were paid US$30 per interview in appreciation for their time and participation in the research (Haack, Gerdes, & Lawton, 2014). The principal investigators selected interview participants who (a) had a young adult family member with a disability who was 14 years or older, (b) were first generation immigrants who spoke Spanish as their first language, and (c) agreed to participate in up to three interviews. The principal investigators welcomed interviewees to include the young adult with a disability or other family members, as they desired, and to choose the location of the interviews in an effort to increase their comfort with the interview process (Haack et al., 2014). All participants chose either their home or the PTI Center office, with all families inviting the research team into their homes during the second and third rounds of interviews. Interview participants lived in or near a town of approximately 27,000 people in a rural region of the Midwestern state. Fewer than half of the interviewees were married. Sixty-seven percent of interviewees reported household incomes ranging from below federal poverty level to barely above federal poverty level. One interviewee reported some college education, five reported attainment of a high school diploma, five reported some high school, and two did not provide this information. Table 1 provides additional demographic information for participants. Data Collection Interviews. All interviews were conducted in Spanish and recorded with participant permission. The principal investigators used the passive interpretation model described by Pitchforth and van Teijlingen (2005) so the interviewer could ask additional questions of interest that were prompted by the participants’ responses. The investigators wanted to engage the caregivers in multiple interviews to encourage participants’ comfort with the researchers and better understand their experiences (Lu & Gatua, 2014). Unfortunately, due to time and financial constraints, the investigators were unable to interview all participants at all three points in time (see Table 1). Therefore, the investigators selected participants for multiple interviews based on anticipated plans for the young adult to engage in transition activities (e.g., internships, graduation, college) in the near future. The first round of interviews was conducted at 6 months following the initial survey. The second round was conducted 6 months after the first round, and the third round of interviews was conducted 8 months after the second round. The investigators used a semi-structured interview protocol across all interviews (see Figure 1). The questions for the first interview were the same for all respondents and included questions about participants’ expectations for their young adult’s employment (e.g., “How would you describe your expectations that your child will get and keep a job in your community?”), knowledge of community resources (“How would you describe your knowledge of resources 5 Francis et al. Demographic information: 1. Tell me about your family. Prompts •• Who lives in your house? •• Would you describe where you live as rural, suburban, or urban? •• What primary language does your family use? •• How old is your child(ren)? •• What types of support does your child(ren) need at home/work? •• What are your expectations for your/your child’s employment? Is your child(ren) currently employed? •• What chores does your child do around the house? (Independently/with assistance) ○• If none, why? ○• If none, what would it take for he/she to successfully do something? •• Are there chores you think he/she could do with assistance or supervision? •• What kinds of tasks do you think he/she can or will be able to do independently or with support? •• What concerns do you anticipate when he/she begins working? Description of employment and barriers to employment: 2. If currently employed (2a and 2b): 2a. Tell me about your child’s job. Prompts •• What kind of job? •• What setting is it in (sheltered or community)? •• What are his/her job responsibilities? •• What kind of supports does he/she need/receive at work? Follow-up •• Are you and your child happy with your child’s job? 2b. Tell me about how your child gained employment. Prompts •• Who did you contact? •• Does your child have an employment goal on his/her transition plan in the IEP? •• Did he/she have any school or community jobs? •• Have you contacted any community resources (e.g., Vocational Rehabilitation, Workforce Centers)? If not currently employed: 2c. Tell me more about your experiences helping your child seek employment. Prompts •• Has your IEP team discussed transition services? ○• If your IEP team experience has been good, then what would you advice would you offer to other parents that are learning about transition services and preparation of their child to be able to work? ○• What are the goals on the IEP (if they relate to the identified work goal of parent or young adult)? •• Have you contacted any community resources (e.g., Vocational Rehabilitation, Workforce Centers)? •• Where in your community could you access assistance or the resources needed for your child complete tasks more independently (e.g., job coach, assistive technology)? •• Does your child have an employment goal on his/her transition plan in the IEP? •• Did he/she have any school or community jobs? •• What opportunities are available for volunteer work for young adults? •• Do you know of any opportunities for him/her to participate that would prepare or give exposure to pre/work experiences? •• Has your child interviewed with anyone? 3. Can you think of a specific story about a barrier you’ve encountered? Prompts •• What do you think contributed to your family experiencing this barrier? •• Describe your experience working with your child’s school. •• Did you encounter any barriers when you asked the IEP team for services or supports? •• Describe your experience working with professionals (Vocational Rehabilitation, Social Security, case manager, etc.). •• Describe your experience working with employers. •• Describe your experience negotiating pay/hours/benefits. •• Describe your experience teaching/empowering your child. •• Describe your experience figuring out paperwork/benefits/transportation. •• Describe your experience securing workplace accommodations/modifications. Figure 1 (continued) 6 Rural Special Education Quarterly 00(0) 4. Can you recall a specific instance when you overcame a barrier? Prompts •• What contributed to your family experiencing this success? •• Describe tools/strategies you used. •• Describe steps you took. •• Describe any help you received and how you got that help. •• Describe any ideas you have to tackle barriers that you haven’t encountered yet. 5. What issues or barriers continue to cause problems? Prompts •• Why do you think these issues continue to cause problems? •• What ideal supports or services might mitigate these problems? •• Do you foresee your family overcoming these barriers? 6. Describe any issues that you have not encountered, but fear becoming problems in the future. 7. How would you describe your knowledge of employment resources and supports available to your child? Prompts •• Do you know of resources in your community that you could access to support your child’s employment? •• Tell me about the experiences that have influenced or impacted your knowledge. 8. How would your describe your expectations that your child will get and keep a competitive employment position? What about your expectation generally for people with disabilities? Prompts •• Tell me about the experiences that impacted your expectations. Figure 1. Semi-structured protocol questions and prompts used during interviews. and supports available to your child?”), experiences with professionals in planning for their young adult’s transition to adulthood (e.g., “Tell me about your experiences helping your child seek employment.”), and experiences supporting their young adult to attain employment (e.g., “Who is helping your child get a job now that they’ve graduated?”). The investigators began subsequent interviews in Rounds 2 and 3 by verbally reviewing the major themes from the previous intervention (e.g., “The last time we met you described difficulty communicating with your case manager. Is that accurate?”). The interview protocols used with families participating in interview Rounds 2 and 3 contained individualized questions (e.g., “Tell us about how your daughter’s job interview went last month”) specific to the content of the previous interview. Interpreters and translators. Recognizing that the backgrounds of researchers, interpreters, and translators are essential factors to consider in cross-cultural research (Rogler, 1999), the investigators carefully considered research team members, particularly since the primary researchers were Englishspeaking Caucasian females working at a university community nearly 6 hr away from the participants’ community. As a result, the investigators collaborated with a bilingual PTI Center staff member to contact interview volunteers and interpret during interviews. The investigators selected her because her family was from Mexico (as were several participants), she was the mother and grandmother of children with disabilities, and she had existing trusting relationships with many of the participants. To prepare the PTI Center staff member to interpret for research interviews, the investigators conducted a series of training sessions using video conferencing. The training sessions addressed (a) the purpose of the study, (b) interview research processes (e.g., description of semi-structured interviews, active listening, questioning techniques), (c) passive interpretation techniques, and (d) strategies for conducting bilingual interviews (e.g., managing communication styles, self-reporting biases, noting language without clear translation, checking interpretations with participants during interviews). The transcription and translation of interviews for Rounds 1 and 2 revealed that the PTI Center staff member sometimes provided additional information during interviews, not stated by participants, because she was familiar with their personal circumstances. The principal investigators addressed this concern by introducing another bilingual interpreter to the third round of interviews. A Caucasian male graduate student from the Department of Spanish and Portuguese who was fluent in Spanish, taught introductory Spanish courses at the university, and was married to a native Spanish speaker from Guatemala interpreted during the third round of interviews. This student and an undergraduate student who was the daughter of Mexican immigrants and had a sister with a disability transcribed and translated interviews and other related materials (e.g., letters, interview questions). Both student researchers spoke Spanish in their family homes and were trained by 7 Francis et al. the principal investigators in qualitative transcription and data analysis procedures. In preparation for Round 3 interviews, the investigators trained both interpreters (PTI Center staff member and graduate student) using the materials previously used with the addition of new information related to the importance of respecting participants’ privacy, only interpreting information stated by participants, and self-reporting when they ask participants clarifying questions. The investigators also defined separate roles for the interpreters. The graduate student researcher served as the primary interpreter in the interviews while the PTI Center staff member recorded field notes and clarified language or contextual information provided by participants, as necessary. The addition of the new interpreter was cleared with the families participating in the interviews before he was introduced to them. Transcription and translation. Due to the large number of interviews, the investigators used both professionals and student researchers to transcribe and translate the interviews. The principal investigator who conducted the interviews managed the transcription and translation of interviews and provided the student researchers with oversight and training on procedures for transcribing and translating the data (including how to document side conversations, emotional nonverbal utterances, and incorrect grammar or unfinished statements; Rubin & Rubin, 2005). She provided the professional transcriptionist the same guidelines. The student researchers also reviewed and cleaned all professionally transcribed transcripts and translations against audio recordings to ensure accuracy and consistency. All interviews were transcribed in the language spoken by the participants, interviewer, and interpreters. Next, the data were translated fully into English to support analysis by all members of the research team. For phrases that defied direct translation, the closest translation possible was used while retaining the exact language used by participants in brackets (Magaña, 2000). Such instances prompted discussions to ensure that all members of the team understood the context of the words used by the interviewee. In weekly meetings, the research team discussed transcription and translation procedures to ensure consistency and reconcile any differences in translations related to cultural nuances, personal experiences, or colloquialisms used by participants (G. Martinez, Marín, & Schoua-Glusberg, 2006). research project. The inclusion of family members with a disability (siblings and spouse), bilingual researchers (one of whom shared a cultural background with the majority of participants), and a self-advocate going through transition provided the analysis team with a diversity of perceptions and experiences to better understand the impact of the contextual and environmental structures that influence Latino families as their young adults with disabilities prepare to transition to adulthood. The analysis team used QSR International’s NVivo 10 Software, a qualitative data management tool, to engage in basic interpretative analysis (Merriam, 2009). First, each team member independently open-coded two transcripts to identify general themes (Creswell & Poth, 2018) and develop the initial codebook by defining themes and descriptive codes. The analysis team used this codebook as a guide to analyze the remaining transcripts, meeting weekly to edit the codebook to reflect agreed-upon changes, discuss the data, and examine the relationships between the various themes and subthemes (Braun & Clarke, 2006). Although we use a portion of the PPCT model (Bronfenbrenner, 2005) to present findings, we did not use this as a framework during our analysis procedures. Trustworthiness The principal investigators engaged in multiple trustworthiness efforts. First, the investigators selected interpreters who were familiar with the topic and partnered with a trusted family support organization in the community (state PTI Center) to facilitate the comfort of the participants (Squires, 2009). Second, the investigators considered verbal and nonverbal linguistic nuances and included multiple trained translators of different cultural backgrounds in an effort to ensure the trustworthiness of translation and data analysis (Lopez, Figueroa, Conner, & Maliski, 2008). Third, the research team met weekly to discuss the codebook, emerging themes, and the influence our experiences and personal biases may have on the interpretation and analysis of the themes (Pitchforth & van Teijlingen, 2005). Finally, the investigators conducted informal member checks with participants at two points in time: (a) at the end of interviews by reviewing key themes recorded in field notes and (b) prior to conducting subsequent interviews in Rounds 2 and 3 (Brantlinger, Jimenez, Klinger, Pugach, & Richardson, 2005). The investigators chose to conduct informal member checks as they were aware that some interviewees had limited literacy skills. Data Analysis The principal investigators combined all interviews for analysis. The analysis team comprised of two Englishspeaking primary investigators, the two bilingual student researchers, and an English-speaking young adult with autism spectrum disorder working as an intern on the Findings In this section, we describe the contextual and environmental factors that influenced Latino families as their young adults with disabilities prepared to transition from high school to adulthood. Although one participant (Ana) was an 8 Rural Special Education Quarterly 00(0) Figure 2. Study themes that emerged during interviews, categorized using a portion of Bronfenbrenner’s (2005) Person–Process– Context–Time (PPCT) model. Note. SES = socioeconomic status. aunt of an individual with a disability, to maintain clarity, we use the phrase “son or daughter with disabilities” to describe the young adult family members with disabilities, unless citing direct quotes. In this section, we use the PPCT framework (Bronfenbrenner, 2005) to organize our findings, and report the subthemes in order of the most frequently and robustly discussed factors across all interviews. Figure 2 displays study themes that emerged during interviews. Microsystem The microsystem includes structures that come in direct and frequent contact with participants’ sons or daughters with disabilities, and, as such, have the greatest influence on the young adult with a disability at the center of the system. The influence of four microsystem structures emerged across interviews and included family members, educators, direct service providers, and peers. Family members. Participants spoke at great length about the important roles that they and other members of their families played in supporting their sons and daughters with disabilities during transition. Overall, participants described their families as cohesive and supportive of each other. For example, participants’ children without disabilities often served as interpreters for their parents and other family members in various instances, including educational meetings and meetings with case managers and other direct service providers (e.g., vocational rehabilitation). Multiple participants also anticipated that their children without disabilities would provide long-term care for their sons and daughters with disabilities. Araceli noted, “They say they won’t leave him. My 17-year-old, he says he’s taking his brother with him. Even if he marries, the wife has to love him and his brother.” Several participants also expected their sons and daughters with disabilities to live at home with the family after graduation, but not necessarily as a result of their disability. Araceli also stated that her son with a disability “doesn’t have to live out of the house to be a person who is independent.” She indicated that living in the family home was the choice of her son: “I can’t make this decision because he doesn’t want to leave. It is not because I am scared or that he can’t [live independently].” Participants discussed numerous forms of caregiving for family members at the time of the interviews. For instance, many reported that their children with and without Francis et al. disabilities and, in some cases, other family members such as aging parents required a great deal of daily care (e.g., assistance with eating, bathing, toileting). Majo described the degree to which her son with a disability who requires physical support relied on her: “If I go [out of town] for three days, he doesn’t go to the bathroom until we come back home because he gets shy.” Participants also provided guidance and emotional support to all of their children to address bullying in school and domestic abuse, such as Sofi who “had to choose kids over” her abusive husband who would “beat on all the kids.” Sofi also described having to help her children “overcome” the trauma that resulted from the abuse. Caregiving responsibilities prevented several participants such as Mirabel from actively participating in transition planning and even working to provide for their families: “I can’t leave my mom by herself. She could fall. She could break something.” Worry and fear also influenced the way in which participants interacted with their children with and without disabilities. Although many siblings without disabilities volunteered to provide long-term support to their siblings with disabilities, multiple participants cited major concerns about the well-being of their sons and daughters with disabilities and caregiving responsibilities falling on their children without disabilities once they died. For example, Inés stated, “If I was to die, what is going to happen to [son with a disability]? What would they do with him?” The fear that no one will be able to provide appropriate support for their sons and daughters with disabilities was one of the driving forces behind participants teaching their sons or daughters with disabilities independent living skills such as cooking and time management skills. As Araceli noted, “I am pretty pleased because I know for fact that he will be able to live by himself, he can live.” Fear of harm (e.g., bullying, physical harm, elopement) also influenced participants’ decisions regarding the types of activities they made available to their sons or daughters with disabilities during transition. For example, some participants did not allow their sons or daughters with disabilities to take public transportation, attend social activities without them present, or take other risks. Inés described how “I don’t even give him a chance to learn” from mistakes such as touching a stove or hot water “because it makes me scared . . . I don’t know how to do it.” Mariana also described fearing the influence that extended family, whose home she shared, might have on her children as they age into adulthood: “My brother likes to smoke marijuana and so does my nephew, they’re always drinking . . . and that’s why I want to move away from there. I’m afraid my kids will be affected by this.” Educators. Participants reported several forms of educator dishonesty and neglect, including high school special educators not providing services written into Individualized Education Programs (e.g., paraprofessional support) and 9 not providing adequate care to their sons and daughters with disabilities while at school (e.g., not changing menstrual pads, not providing appropriate positioning for individuals with physical disabilities). Participants also reported that their sons and daughters with disabilities experienced abuse, discrimination, and excessive punishment in high school. Mariana reported that her son was punished by the school principal “all the time for any little thing he does,” even though the “other kids do the same thing.” Montserrat remarked, “I don’t think they teach him, they just punish him and that’s all.” Verónica noted that her son thinks “that nobody is good, that everyone is racist” at his school because he “would get sent to the office even for dropping his pencil.” Frequent punishment, including “always be[ing] by himself in a room in the office,” resulted in Verónica’s son “no longer wanting to go [to school].” Beatriz and Ana (sisters) described how Beatriz’s son with a disability “would cry and cry” when he came home from school because he witnessed his special educator abusing other students with disabilities and because she would harshly scold him for issues such as “not eating correctly” (which was physically challenging for him). The educator was later arrested and lost her teaching license as a result of her abusive behavior. Araceli’s experiences with educators notably differed from the other participants, as she described developing reciprocal relationships with her son’s special education teachers by addressing their needs (e.g., volunteering to assemble materials) and engaging in collaborative efforts to help her son secure employment. However, Araceli also admitted that she sometimes was “pushy” and held high expectations for her son’s educators to help him succeed in school and prepare him to work and recreate in the community following graduation. Direct service providers. Mariana and Sofi reported dedicated direct service providers (a case manager and a social worker) who built trust and met the needs of their families by helping Mariana find appropriate housing and providing Sofi suggestions on how to best support and her son with a disability. However, Regina and Ana (who were among the few participants who accessed state-supported services) generally reported issues related to high staff turnover, a lack of translated materials and interpreters, staff providing misinformation (e.g., participants needing to wait until their son or daughter graduates high school to apply for vocational rehabilitation services), and being “ignored” by staff. Regina described how “they took away” her son’s Medicaid card “. . . because according to [them], he doesn’t need it anymore.” Regina explained that “they would give him the card back only [if he] hurt himself, cut himself, or jump from a bridge . . . I told my sister, ‘How so? They’re just waiting for him to do it again?!’” 10 Peers. Participants who discussed interactions between their sons and daughters with disabilities and their peers most often described instances of bullying in high school and the community. Several participants also described a lack of peer networks and a desire for their sons and daughters with disabilities to have “places where there’s also people with disabilities” or the opportunity for them “to socialize with other people—something different than just home.” Again, Araceli’s experiences differed from others, as she indicated that her son, who “has a lot of charisma . . . [and] that part that allows people to like him,” developed relationships with his coworkers without disabilities. In addition to providing Araceli’s son with natural supports on the job, his coworkers also invited him to social events in the community. Mesosystem The mesosystem involves connections and interactions among microsystem structures. These connections and interactions frame the relationships among microsystem structures (i.e., family, educators, direct service providers, peers) and influence the expectations, knowledge, and transition experiences of young adults at the center of the system. Participants primarily described their interactions with high school educators. Araceli described overall positive experiences collaborating with educators because she “always demanded things” but was also willing to work “hand-in-hand” with educators to support her son with a disability to access general education programming and high school activities including the school band. However, many participants reported that educators “didn’t listen” and rejected requests for student support because the school “didn’t have any funding.” Multiple participants also conceded that they rarely met with educators, often because they “don’t even know who to talk to.” Other participants indicated they were never informed about their son or daughter’s educational programming or progress. In addition to negative experiences with high school educators previously discussed (e.g., discriminatory discipline practices), language barriers negatively influenced parent–educator collaboration and collaboration with direct service providers. Many participants identified that not speaking English placed their family at a notable disadvantage to collaborate with educators and service providers during transition. In fact, Araceli even remarked that her inability to “talk fluent English” was the “only deficit” preventing her from effectively supporting her son with a disability to successfully transition from high school. Participants seldom received documents in Spanish and interpreters rarely attended meetings. Inés indicated that even when interpreters did attend meetings, “a lot of times interpreters don’t say what a person wants to say.” Moreover, Rural Special Education Quarterly 00(0) as Sofi noted, on the chance translated materials were available, the translations were “very antique and someone can’t understand” what the document said which hindered her ability to engage in transition planning. She stated that it is sometimes easier to read materials in English rather than Spanish: “The translation of the Spanish, I don’t know who translated it but it was not a Mexican nor a Salvadorian.” Exosystem The exosystem involves connections and interactions in environments that do not directly interface, but ultimately have an indirect influence on young adults at the center of the system. Participants focused on four exosystem structures that influenced family systems during transition, thus indirectly their sons and daughters with disabilities: (a) citizenship concerns, (b) fear of police, (c) challenges with caregiver employment, and (d) negative interactions with community-based service agencies. Citizenship concerns. The “fears that one has as someone here illegally” emerged across interviews, even among participants with immigration or citizenship documentation. Participants and other members of their community avoided accessing available resources (e.g., “food stamps,” “a medical card”) because they believed the U.S. government would not provide them “papers” if they were perceived “as a burden to the government” for accessing state and federal services. Sofi even considered allowing a friend who was a U.S. citizen adopt her son with a disability “so that she could get his papers so that he would get his support” after graduation from high school. Participants reported receiving the majority of their information on policy or government issues (e.g., immigration regulations, where to get a driver’s license, benefits, or other resources for individuals with disabilities) through “word of mouth” from other Latino families in the community. Because of their unfamiliarity with available community resources and uncertainty about how accessing these resources would influence their immigration status, participants relied heavily on stories and recommendations from other Latino community members. If there was any question about the reliability of information, participants erred on the side of not accessing resources and not interacting with high school- or community-based service professionals. Furthermore, several participants felt dismayed by the cost of hiring an immigration lawyer (e.g., “An attorney would charge me US$250 just for asking him about immigration”) and reported that “some lawyers are scammers—they don’t really know immigration law,” which influenced the degree to which participants were willing to access community resources to support their young adult’s during transition and after graduation. 11 Francis et al. Fear of police. Participants reported avoiding most authority figures, especially police, for fear of compromising their immigration status or getting deported. Some participants described negative interactions with the police, including getting arrested for infractions such as driving without a license and domestic disturbance. These interactions were “a very hard hit” on participants’ children, making their children wary of the police and “scared to be arrested” themselves or deported. Mariana had to reassure her children that it was okay to approach the police: “I told them to not be afraid because they are from here. They have their papers.” This wariness of outsiders and perceived authority figures was even apparent during interviews. For example, Alejandra’s young adult daughter was hesitant to greet the interviewers when she walked in during an interview in her family home. Alejandra immediately reassured her daughter, “It is okay. Nothing happens.” Challenges with caregiver employment. Participants described various forms of laborious employment, such as “working the season in the fields” and “selling tamales—knocking door-to-door.” Some participants, such as Sofi, described her inability to attend school-based meetings due to other work and unpaid caregiving responsibilities: “It’s just that there are times when I can’t go because I work a lot or because I don’t have anyone to watch [son with a disability] for me.” However, several participants described needing “a stable job” and indicated they had “no other option” other than living in a “very, very small space—very dirty” due to a lack of income. Unemployment or underemployment also hindered participants’ ability to pay for immigration lawyers or other services (e.g., job coach, respite care). Beatriz and Ana detailed their experiences working at a large food processing facility in the community. Specifically, Ana experienced a workplace injury that required surgery and resulted in permanent “implants in [her] back,” longterm physical therapy, and a great deal of chronic pain: “I can’t walk anymore. Even to pee, I would cry.” Beatriz described numerous ways representatives from the processing facility had mistreated her. For example, when she “complained about the pain” from an on-site injury, human resource staff told her that “they were gonna give her an . . . on-site . . . urine test,” per company policy. “Five minutes later [human resources] told her she had to abandon the premises because of drugs” because, according to Beatriz, the company makes false accusations of drug use against employees when “they want to fire you” to avoid paying workers’ compensation. Ana recalled how, after her injury, the company lawyers called her to a meeting and “wouldn’t let me leave until I signed that I didn’t want to work anymore.” Ana refused to sign: “I told the attorney . . . I said . . . ‘Would you live comfortably with a disability check?’ and he said, ‘No.’ I told him, ‘Well neither would I.’” Both Ana and Beatriz also described the “no good” medical care provided by workers’ compensation insurance. Ana recounted, “The doctor would just say, ‘Hello, how do you feel today?’ I tell him, ‘I don’t want you to greet me so cordially . . . I want you to do something for me because I can’t take this pain anymore.’” These participants felt “ruined” as a result of working at the facility, which influenced their ability to provide care and financially support their family. Such challenges with their own employment influenced the caregivers’ hopes and expectations for their children’s employment after graduation. Beatriz noted, “I tell him there are many things he can do [for employment] without having to get hurt at the [industrial] plants.” Negative interactions with community-based service organizations. Most participants indicated that they did not reach out to community-based service organizations. We described the interactions of those who did interact directly with service providers from service organizations in the “Microsystem” subheading. At the system level, Ana was the only participant who richly described her experiences attempting to secure services for herself after acquiring a disability. In particular, she described how a representative from vocational rehabilitation “would always tell me, ‘I can’t talk to you because you are not a citizen’” without first inquiring about her immigration status. When Ana indicated that she was in fact a “United States citizen,” the representative requested her to “prove it.” Ana went on to describe her as a “very bad Chicana” who was distrustful of her, and who each time Ana visited “would ask me for my naturalization certificate . . . every time I would go” until “one day she finally lost it [Ana’s documentation].” To make matters worse, when Ana sought to file a complaint she was told that all complaints go through the very same “bad Chicana” who constantly questioned her citizenship and “lost” her paperwork. These experiences negatively influenced her expectations that the service system would be a source of support for her family member with a disability when he sought employment after graduation. Macrosystem The macrosystem involves values, norms, customs, socioeconomic status (SES), bias, and beliefs. Three macrosystem structures that influenced family systems emerged during interviews: (a) cultural identity, (b) low SES, and (c) stigma and discrimination. Cultural identity. The Latino cultural value of familial closeness and protection of family members permeated all interviews, as exemplified by Araceli’s remark: “We as Hispanics, we are usually close to our families and special needs children are inside with us.” Participants described “going everywhere” with their sons and daughters with disabilities, 12 Rural Special Education Quarterly 00(0) even to “a lot of baby showers where boys aren’t supposed to go” or other social activities. The intimacy of close family relationships extended beyond immediate family members to extended family (as evidenced by Beatriz and Ana’s relationship) and even trusted individuals in the community (e.g., close family friends, family members of close family friends). This culture of family closeness provided a system of informational and emotional support for the young adults during transition that was not always recognized or respected by high school educators and other community-based service professionals. The influence of language on cultural identity also emerged as a predominant theme across interviews as part of the macrosystem. Many participants such as Yessenia and Majo described their preference to speak their native language, and Araceli highlighted the importance of Spanish-speaking parents of children with disabilities learning English to better understand the cultural differences regarding disability in the United States: If we don’t get the language, that’s the obstacle because if we don’t understand then we won’t be able to change our way of thinking [about people with disabilities] from our country to here . . . to think from a different perspective . . . In my culture, we don’t expect so much from people who have special needs. Araceli also discussed how her “origins” of growing up in Mexico and immigrating to the United States influenced her expectations to “progress” and “fight and fight until you achieve something.” When considering her cultural background, Araceli said, “I love my country—my parents are the best from this world . . . [but] my parents didn’t have dreams and I wouldn’t like to live as my parents lived.” These expectations influenced her interactions with high school educators, including the degree to which she collaborated with educators (e.g., being “pushy” and holding high expectations for her son’s educators to help him find employment). Low SES. The majority of participants reported a household income that hovered near the federal poverty limit (from barely above to notably below), which influenced their ability to provide both needed (e.g., adequate food and safe shelter) and desired items (e.g., cable TV, Internet, new clothes) for their families. Low SES stemmed from several factors, including issues related to legal working status, single parent households (thus single income households), and limited education (approximately half of the participants did not have a high school diploma). Participants described the various ways in which low SES affected their families, including limited options for housing and feeling demoralized. For example, Mariana recounted how one of her children “want[ed] to give the impression that [they] have money” and she had to urge him to “accept that we’re poor.” She described how her children would sometimes “throw” the family’s low SES in her “face” because “there’s no Internet . . . there aren’t games . . . there isn’t cable” in the home. Low SES also influenced participant involvement in transition planning, as participants were not always aware of the U.S. education system (including their rights), able to take off work, or afford child care and transportation to get to meetings. Stigma and discrimination. Participants made overarching statements such as “there is still a lot of racism,” there is “so much corruption here in the United States,” and that many local employers, lawyers, and other professionals in the community “don’t care” about the well-being of Latino families because “they’re heartless.” Several participants described feeling stigmatized by non-Latinos, as they observed “people fighting . . . because they don’t want the Dream Act” because “they don’t think it’s fair to American citizens for us to be here illegally and then get a visa.” This resulted in “everybody get[ting] scared” about immigration policies and some professionals treating participants unjustly (such as unethical immigration lawyers and the “very bad Chicana” who repeatedly questioned Ana’s immigration status). Stigma and uncertainty about policies such as Deferred Action for Childhood Arrivals (DACA) contributed to participants relying on information provided by other Latino families in their community instead of professionals with expertise in immigration with regard to accessing supports for their young adults after graduation. Discussion There is substantial research regarding parents’ perceptions of the transition of their young adults with disabilities from high school to adulthood (Morningstar & Mazzotti, 2014). However, there is notably less research focusing on the perception and experiences of culturally and linguistically diverse families, and especially Latino families (Francis, Gross, Lavín, 2018; Samuel et al., 2012). The purpose of this study was to explore the experiences of Latina caregivers of young adults with disabilities to better understand the contextual and environmental factors that influence family systems as young adults prepare to transition from high school to adulthood. We adopted a portion of Bronfenbrenner’s (2005) PPCT model to organize our findings by four interrelated environmental systems, the micro-, meso-, exo-, and macrosystems. It is essential to consider all structures in each of these systems, as they directly or indirectly influence the outcomes of young adults with disabilities. Participants emphasized the importance of their families as a form of social capital, including the importance of familial closeness, support, and caregiving roles. Familial closeness and a culture that values familism is an important 13 Francis et al. aspect of Latino culture (Stein et al., 2013), and the influence that families have on student post-school outcomes is well documented in the literature (Bryan & Henry, 2012; Burke & Hodapp, 2014; Francis, Gross, Magiera, et al., 2018). Middle-aged caregivers (especially those who value familism) often undertake multiple caregiving roles by supporting aging parents, their own children, and extended family members, thus increasing familial responsibilities and stress (Hoffman & Mendez-Luck, 2011). Although such caregiving roles resulted in stress, participants also noted, despite overarching concerns for the well-being of their sons and daughters with disabilities, that they had confidence that long-term support for their sons and daughters would be provided by siblings and extended family members which created a sense of relief. Constructive relationships embodied by collaboration and reciprocity between caregivers and professionals are an essential factor in positive transitions from high school (Hirano & Rowe, 2016). However, Latino families of children with disabilities often report feeling marginalized by school professionals (Aceves, 2014; Dávila, 2015). Barriers including distrust (Chu, 2014), limited availability of interpreters and translators in rural communities (Barrio, 2017), differing cultural values between educators and families (e.g., independence vs. interdependence; Kalyanpur & Harry, 2012), and a limited amount of educator knowledge on how to effectively partner with culturally and linguistically diverse families (Barrio, 2017; Chu & Wu, 2012) commonly contribute to breakdowns in family–professional relationships. With the exception of Araceli who described a positive “50/50” relationship with her son’s educators and some reports of direct service providers connecting families with needed resources (e.g., housing support), participants overwhelmingly reported negative interactions with educators and service providers, including instances of neglect and racism. In addition, no participants reported instances of collaboration between direct service providers with other microsystem structures such as educators. This is discouraging, considering the importance of interagency collaboration as a part of successful transition planning (Riesen, Schultz, Morgan, & Kupferman, 2014). Furthermore, although multiple interviews occurred over 18 months, little change occurred over this time, indicating that existing infrastructures are not effectively supporting Latino young adults with disabilities to secure positive outcomes, such as integrated competitive community employment. The number of U.S. school-age students with at least one immigrant caregiver has increased from approximately 8 to 18 million in the last 25 years (Migration Policy Institute, n.d.). However, non-English-speaking families consistently experience lower levels of engagement in their children’s education as compared with their English-speaking counterparts (McLeod, 2012). Although IDEIA (2004) mandates that schools provide interpretation and translation services so that families who do not speak English can participate in their child’s educational planning, one of the primary barriers to effective family–professional partnerships is language differences (Pang, 2011). Discrimination and stigma related to speaking Spanish as a first language also emerged throughout interviews. These findings are especially troubling, given the emphasis that many participants placed on language as a part of their cultural identity. Participants described social capital through strong neighborhood ties and receiving a majority of their information about immigration and social services from other Latino members of the community. This process sometimes resulted in misinformation and increased wariness among participants. Uncertainty of immigration regulations contributed to participant guardedness around law enforcement and insecurity accessing public resources. Furthermore, the discrimination participants experienced at work, school, and in the community reflect the institutionalized racism and discrimination commonly reported in the literature. For example, similar to this study, Flores and colleagues (2011) found that barriers in the workplaces of Midwestern Mexican immigrants (e.g., discrimination, poor pay, hard labor) were associated with diminished mental health. The present study expands on previous research by describing the trickle-down impact that negative workplace environments not only have on employees, but also on their families (Gassman-Pines, 2015). Although participants found strength and wisdom within their families, trusted community members, and helpful educators and direct service providers, the experiences participants described were laden with discrimination, language barriers, stress, and anxiety. The sense of double jeopardy (incurring risk or disadvantage from two sources simultaneously) was evident for the caregivers as they experienced marginalization based on ethnicity and culture in addition to challenges related to raising a young adult with disabilities who were English language learners. Implications To remediate many negative experiences reported by participants, school professionals (including general and special educators and administrators) can collaborate with school, district, and community resources (e.g., bilingual staff, district interpreters, local department of family services) to honor and support linguistic differences and secure interpreters and translators to ensure that families can understand and access information and services. In addition, professionals building trust and positive reputations within communities and mitigating language barriers may increase the presence of direct service providers within the microsystem and collaboration in the mesosystem. To achieve this, school- and community-based service 14 organization administrators should promote systematic expectations for their staff to (a) value a more “interdependent” view on educational programming and individual goals (e.g., place of residence), (b) encourage all family members (including young adults with disabilities) to contribute to and support the achievement of the young adult’s goals and outcomes, and (c) promote community outreach to build trusting relationships and share accurate information and resources. With the exception of one participant whose son developed relationships with coworkers, participants generally noted a lack of peer social networks. This finding indicates that educators and direct service providers should attend to developing social skills (including “charisma”) and young adult social networks to facilitate positive transitions from school to employment and adult life. In addition, research indicates that culturally and linguistically diverse students with disabilities benefit from mentoring relationships in which they learn about varied perspectives, career goals, social skills, self-determination, and cultural connections (Leake, Burgstahler, & Izzo, 2011). As a result, education and direct service providers should consider creating formal and informal mentoring programs to support positive transitions from high school and create social networks in young adults’ communities. Participants also noted the importance of social capital, such as community members providing information and support. However, they lacked knowledge and access to available resources and services, in part, because of misinformation or fear of how accessing services may influence their citizenship. Educators can increase family social capital by connecting families to available resources and providing a safe space to ask questions so that families do not have to speculate about available services and supports. In fact, inviting representatives from trusted community resources (e.g., community recreation centers, PTI Centers) to attend transition planning meetings with families would enhance family–professional partnerships and interagency collaboration, which are both key indicators of successful transition from high school and requirements under IDEIA (2004) and the Workforce Innovation and Opportunity Act (2014). Furthermore, educators and service providers would benefit from professional development to better (a) recognize how their own cultures, values, expectations, biases, and assumptions drive their behavior; (b) support individuals and families of diverse cultures with varied experiences; and (c) learn about immigration, education, and disability/ social services policies so that they may provide accurate information to families and other professionals. This is another opportunity, which could be initiated at the state level, to pool resources and provide essential training and information to both educators and direct service providers and increase collaboration. Rural Special Education Quarterly 00(0) In light of the many instances of discrimination experienced by participants and their sons and daughters with disabilities, policymakers and community leaders (including local employers) should review current antidiscrimination laws, policies, and practices and solicit input from Latino community members on ways in which they can improve current practices and accountability procedures. For example, employers may consider (a) offering mental health support for employees to help them cope with stress from caregiving responsibilities; (b) providing workshops to facilitate cultural awareness and responsiveness; (c) ensuring that employees understand how to recognize discrimination and other forms of injustice, as well as their rights and workplace supports; and (d) collaborating with community organizations to offer English language classes to interested employees (Flores et al., 2011). Limitations This study is notable because it adds to the scant literature on the contextual and environmental structures that influence Latino family systems as young adults with disabilities prepare to transition from high school to adulthood. The methods described in this study also contribute to a paucity of information on conducting research with a population that is underrepresented in disability and transition-based literature (Aceves, 2014; Achola & Greene, 2016). However, this study also includes four primary limitations. First, although their countries of origin differed, all study participants were Latina caregivers (12 mothers and one aunt) living in one rural Midwestern community. In addition, there are missing demographic information for Ana and Beatriz, including household income and highest degree earned. However, some of these data were missing because Ana was Beatriz’s sister and not the parent of a young adult. Ana arrived with Beatriz for the interview, as such she had not completed a survey and did not provide those demographics. Furthermore, participant demographics were largely similar (e.g., family income, degree of formal education). Although qualitative research is not intended to be generalized across populations (Creswell & Poth, 2018), these demographic similarities are not reflective of the diverse population of Latino families living in the United States. Second, we did not interview all participants 3 times due to time and funding constraints, thus preventing our ability to determine if new themes emerged over time across all participants. Third, we did not conduct formal systematic member checks with all participants by sharing transcripts with participants to review (Creswell & Poth, 2018) because we were aware that many participants had literacy challenges and would not be able to review the transcripts. So instead we asked clarifying questions throughout interviews, summarized key information, and began second and third rounds of interviews by presenting key themes from Francis et al. the previous discussion and inviting participants to expand or correct information. Fourth, as discussed in the “Method” section, we experienced several challenges interpreting and translating interviews that are common in cross-cultural research (Pitchforth & van Teijlingen, 2005; Squires, 2009). In this study we sought to remediate these methodological limitations by (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) checking and editing all transcripts for accuracy and consistency, (e) omitting information not directly provided by participants from our analysis, and (f) meeting regularly as a research team to ensure consistency in translations and address potential biases in analysis. Future Directions In this study, we organized our findings in the “Context” component of Bronfenbrenner’s (2005) PPCT model: the micro-, meso-, macro-, and exosystems. Although there was some discussion among participants about how changes over time (e.g., moving into a new home) and how young adult characteristics and actions influenced their own development (e.g., charisma, long-term support needs), we did not apply the other aspects of the PPCT model. Future research should build off of this study by using Bronfenbrenner’s complete PPCT model to investigate the outcomes of Latino young adults with disabilities. Moreover, participants also described the importance of cultural identity as a large-scale construct (e.g., “We as Hispanics, we are usually close to our families . . . ”) and the influence that culture had on their individual perceptions and behaviors (e.g., “going everywhere” with their sons and daughters with disabilities, preferring to speak Spanish). Bronfenbrenner’s model calls for considering culture as part of the microsystem. However, consistent with recent literature, future research should consider family culture as part of an individual’s microsystem to better understand and recognize the influence of culture on development (VélezAgosto, Soto-Crespo, Vizcarrondo-Oppenheimer, VegaMolina, & García Coll, 2017). In addition, future researchers should continue to consider whether variations might exist in the application of the PPCT to other rural populations. Furthermore, Critical Race Theory (CRT) asserts that institutionalized racism is embedded in U.S. society, and, as a result, perpetually marginalizes people of color (Delgado & Stefancic, 2017). CRT has expanded to examine the experiences of specific subgroups of marginalized populations, including those of the diverse Latino community (LatCrit; K. Johnson, 1997) to better understand how institutionalized discrimination and race, gender, class, culture, language, and immigration status influences this population (Pérez Huber, 2010). CRT has also extended to the 15 disability community through DisCrit, which explores the social construction of race and disability and examines the intersectionality of racism, ableism, and marginalization (Annamma, Conner, & Ferri, 2016). Using these theories to examine the influence of disability, race, and culture in the transition to adulthood would enhance the literature on transition experiences of Latino young adults with disabilities. Examining the experiences of Latino families and students with disabilities through an ecological, LatCrit, and DisCrit lens can help future researchers better understand and unpack how discrimination and stigma related to race, disability, gender, class, culture, language, and immigration status manifest in different communities and microsystem structures who have continuous and direct contact with young adults with disabilities. Researchers and policymakers should also consider how institutionalized discrimination and stigma found in macro- and exosystem structures influence supports, services, education, employment, and community acceptance of Latino families and young adults with disabilities. This theoretical framework can also be used to explore successful strategies and structures in each system to recognize and address racism, ableism, and marginalization across the United States. These findings can serve as a foundation for policy recommendations and systems change to better serve marginalized families with young adult members who have disabilities. For example, future researchers should investigate how caregivers prefer to be involved in their children’s education (e.g., participating in a school-wide task force; Barrio, 2017), as well as what mechanisms it would take to support such involvement (e.g., logistical support, translators, support from trusted community members). Researching the experiences and perceptions of Latino students and families (including fathers, siblings, extended family members, and close family friends) and professionals (e.g., teachers, direct service providers) around the nation in this way would address a limitation of this study, which explored the experiences of 13 Latina caregivers in a single rural Midwestern community. Furthermore, because cross-cultural qualitative research methods are often not well described and can come with linguistic and other cultural challenges (Squires, 2009), future researchers can use the methods described in this study (including the challenges experienced and strategies to address them) to inform their approach. Gathering in-depth, rich information gained from case study research may also expand the findings of this study and reveal specific factors that stymie or contribute to positive family–professional relationships. Finally, there was little mention of how the young adults with disabilities influenced their own outcomes, as the PPCT model postulates. This finding differs from previous research on barriers to competitive employment, which found that three of the top five barriers identified by 68 families of young adults with disabilities related directly to 16 Rural Special Education Quarterly 00(0) the characteristics of the individual with a disability seeking employment (i.e., poor social skills, need for extensive support, and severity of disability; Francis, Gross, Turnbull, & Turnbull, 2014). Future research should investigate how individual characteristics influence the transition to adulthood across diverse participants, as well as how perceptions of the influence of individual characteristics differ across stakeholders (e.g., professionals, family members, young adults). Ethical Approval University of Kansas IRB number STUDY00000519. 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) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: 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). ORCID iD Grace L. Francis https://orcid.org/0000-0002-8707-9430 References Aceves, T. C. (2014). Supporting Latino families in special education through community agency-school partnerships. Multicultural Education, 21, 45–50. Retrieved from https:// eric.ed.gov/?id=EJ1045853 Achola, E. O., & Greene, G. (2016). Person-family centered transition planning: Improving post-school outcomes to culturally diverse youth and families. 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