Despite initiatives supporting young adults with intellectual and developmental disabilities (IDD) to engage in post-secondary education and integrated employment, those with more intensive support needs are not as easily involved in these post-school experiences. In an effort to learn from positive examples, we examined parent involvement in meaningful post-school experiences by eight young adults with IDD and pervasive support needs. Secondary analysis of data from a prior interview study yielded this smaller sample of eight young adults with meaningful post-school experiences. Their parents were actively involved as fierce advocates and creative problem solvers. The active involvement of parents included: a) attitudinal facilitators, b) advocacy efforts and perceptions, and c) strategic actions. Implications for future research and practice are described.
Recent initiatives have been addressing the persistently low rates of performance by young adults with intellectual and developmental disabilities (IDD) in the traditional post-school outcomes of employment, post-secondary education, and independent living (Bouck, 2012; Grigal, Hart, & Migliore, 2011; Verdonschot, de Witte, Reichrath, Buntinx, & Curfs, 2009). Much attention has been paid to improving the transition process which is meant to prepare young adults with IEPs to be college- and career-ready. Notably, the reauthorization of the No Child Left Behind Act (2001) and the Individuals with Disabilities Education Act (2004) mandated the use of evidence-based practices so that all students with disabilities graduate high school ready for employment, post-secondary education, and independent living (Mazzotti, Test, & Mustian, 2014). After decades of segregated employment opportunities, more recent developments, such as Employment First Initiatives, have placed emphasis on securing integrated employment for adults with IDD (Callahan, Griffin, & Hammis, 2011; Certo & Luecking, 2011; Migliore, Grossi, Mank, & Rogan, 2008; Rogan & Rinne, 2011). The recently enacted Workforce Innovation and Opportunity Act is anticipated to increase the role of public vocational rehabilitation in the transition from school to adult life and emphasize development of individualized supports for individuals with “the most significant disabilities” to engage in post-secondary education and competitive integrated employment (Hoff, 2014).
However, with such a wide range of experiences among those with IDD, it is critical to more fully consider the post-school experiences of those with the most intensive support needs. Such individuals are not as easily involved in the traditional post-school outcome areas. “Pervasive support” refers to constant support in multiple environments across daily life skills (Luckasson et al., 2002). Compared to those with less intensive needs, those with pervasive support needs are more likely to experience poor outcomes in the traditional areas of employment, post-secondary education, and independent living (Beadle-Brown et al., 2015). In fact, those with more intensive needs are more likely to live in the family home and spend time in day programs or sheltered workshops, less likely to experience choice in their lives, and have lower rates of paid employment and community inclusion (Gray et al., 2014; Neely-Barnes, Marcenko, & Weber, 2008). Families may perceive employment to be difficult and less likely for those with pervasive support needs (Blue-Banning, Turnbull, & Pereira, 2002; Chambers, Hughes, & Carter, 2004; Davies & Beamish, 2009; Rossetti, Lehr, Lederer, Pelerin, & Huang, 2015). Recognizing that people with pervasive support needs may not engage in full-time paid employment, community-based non-work activities such as volunteering and community participation have emerged as a potential alternative (Sulewski, 2010). Some families have focused more on community participation and personal recreation than on integrated employment (McIntyre, Kraemer, Blacher, & Simmerman, 2004; Rossetti et al., 2015).
With such a range of possibilities, it is important to consider how families respond to the challenge of post-school experiences for those with IDD and pervasive support needs. In fact, positioning individuals with disabilities and their families as experts on the lives they wish to lead and the supports they need to do so was identified as a research priority in this area (Hewitt, Agosta, Heller, Williams, & Reinke, 2013). We previously published a study (Rossetti et al., 2015) that examined parent perceptions of what their young adult children with pervasive support needs and limited functional communication were doing upon exiting from special education. Drawing on the work of others who explored the concept of meaningful experiences for those with IDD as alternatives or complements to the traditional post-school outcomes (O'Brien & O'Brien, 1990; Sulewski, 2010; Walker & Rogan, 2007), we sought to determine how meaningful the parents thought their children's lives were and what the concept of “meaningful” meant to them. Grounded in the parents' perspectives, our theoretical framework for meaningfulness included three dimensions: community participation, quality of experiences/schedule, and individual indicators. Meaningful time was manifested by being active or busy in the community, and independent from one's parents with peers, staff, or others who love the individual; engaging in a variety of interest-based, age-appropriate, typical, and purposeful activities; resulting in the individual seeming happy, being stimulated, and making a positive impact on others. Though it does not explicitly mention self-determination, this framework acknowledges the assistance required by those with pervasive support needs to act volitionally as the causal agents in their lives (Wehmeyer, 2005).
The prior study supported the development of the theory, but we noted clear differences among the participants regarding meaningfulness in their young adult children's lives. Specifically, we found some clearly led more meaningful lives according to our theoretical framework (e.g., more time in the community, engaged in more typical activities). We saw this as an opportunity to learn from successful examples and thus designed this second study. This article reports findings based on secondary analysis of the data from the initial study that were not conducted in the previously published article.
This study focused on parent involvement in their children's meaningful post-school outcomes. Families are intimately involved in the process and outcomes of the transition from school to adulthood for individuals with pervasive support needs (Blacher, 2001; Chambers et al., 2004; Dyke, Bourke, Llewellyn, & Leonard, 2013). As such, it is critical to focus on family perspectives in research on post-school outcomes (Dyke et al., 2013; McIntyre et al., 2004). Examining parent involvement in young adults' post-school activities can improve the understanding of this challenging time (Curtis, Rabren, & Reilly, 2009). Focusing on individuals with pervasive support needs, who are underrepresented in research, we aimed to explore and identify solutions to common challenges. This research addressed the following questions: In what ways are parents involved in the meaningful post-school outcomes of young adults with pervasive support needs? How do parents perceive their roles in this process?
A qualitative approach matched the exploratory goal of the study. The inquiry centered on parent involvement in meaningful post-school experiences by young adults with pervasive support needs. We were interested in what roles parents played in their children's meaningful post-school experiences and how they perceived their involvement.
The participants were eight parents (seven mothers, one father) of young adults with IDD and pervasive support needs who resided in four US states in the Northeast (n = 3), South (n = 4), and Midwest (n = 1). Of the eight young adults the participants described, there were four females and four males ranging from 22–32 years of age (mean age = 26.5 years; SD = 3.5). The parents reported the disability diagnoses of the young adults to be cerebral palsy (n = 4), Angelman syndrome (n = 3), and Rett syndrome (n = 1). Their children communicated by physical gestures, facial expressions, vocalizations, and choices via augmentative alternative communication. The parents reported that most young adults received special education services in a general education class at least 80% of the day in high school (n = 6). See Table 1 for additional descriptive information.
All study procedures were approved by the Boston University Institutional Review Board. The participants were drawn from the initial study that included 23 parents (21 mothers, two fathers) of young adults with IDD and pervasive support needs. Recruitment occurred through dissemination of a one-page flyer to organizations (e.g., TASH) and agencies (e.g., Federation for Children with Special Needs) supporting individuals with IDD. Snowball sampling was also employed to target individuals who met the study criteria (Bogdan & Biklen, 2003). The criteria were based on descriptions of the young adults as a) being 22 to 32 years old, b) requiring pervasive levels of support, and c) demonstrating limited functional communication. Those interested completed an online survey with forced-choice and open-ended questions about their children's support needs and functional communication. The first two authors evaluated all responses against study criteria and agreed on all screening decisions. Based on the criteria, 23 of 54 respondents screened in to the initial study.
This study explored parent involvement in the meaningful post-school experiences of eight of the young adults in the original study. The eight were those we systematically identified as having the “most meaningful” lives based on secondary analysis of the data provided by the original 23 participants. The first, third, and fourth authors wrote one-page, semi-structured summary profiles based on all the data in an attempt to efficiently capture each “story” as described by the participants. The first author wrote and presented five profiles to the research team (i.e., the other authors). The research team discussed the profiles and developed a template for writing consistent but individualized profiles. The template included the following sections: a) individual with IDD (age, strengths, needs, disability diagnosis, communication, mobility, adaptive functioning, and schooling), b) family and staff (family composition, living arrangement, and staffing), c) community and social experiences (schedule of activities and therapies, social opportunities, employment, and services utilized), and d) participant perspectives (how the participant perceived these things and thought his or her child perceived them). The remaining profiles were written by the first, third, and fourth authors. Each profile was checked for accuracy against the full interview by someone other than its author.
To identify participants in this study, the first and third authors independently coded each of the 23 profiles based on whether how the young adults spent their time was characterized by (a) a presence in the community; (b) independence from parents; (c) engagement in a variety of interest-based, age-appropriate, typical, and purposeful activities; (d) social interaction opportunities with peers, staff, or others who love the individual; and (e) paid or volunteer employment. The first four indicators derived from the theoretical framework in the initial study for how the parents defined meaningful time (Rossetti et al., 2015). The fifth indicator was included as a traditional post-school outcome since most adults in the United States are expected to be employed or seeking employment (Migliore, Hall, Butterworth, & Winsor, 2010). Next, we independently rated each profile as a Level 1 (coded with 4 or 5 of the 5 indicators for meaningful time), Level 2 (3/5), or a Level 3 (0–2/5). Intercoder reliability scores for the coding of each profile with the five indicators of meaningful time was over 90%, and for the level ratings was 100% (agreements/agreements + disagreements × 100). The focus in this study are the eight young adults whose profiles were rated at a Level 1, and the participants were the parents of those young adults.
New data were not collected as part of this study. As part of the initial study, the first author interviewed each participant once by phone using a semi-structured interview technique to obtain comparable data across participants while allowing for flexibility to follow up on topics that emerged during the interview (Bogdan & Biklen, 2003). All participants were asked to describe their son or daughter; how he/she spent his/her time in a typical week; what supports, strategies, and services were utilized to establish these experiences; and, how the participant perceived these things. All interviews were audio recorded and transcribed verbatim (364 single-spaced pages).
The analytical framework was based on the interpretevist paradigm within which the goal of research is not to “describe, predict, and control” but to “describe, interpret, and understand” (Ferguson, Ferguson, & Taylor, 1992, p. 6). Rooted in the social construction of reality, the interpretevist framework allows for recognition and understanding of multiple constructions of complex social phenomena such as pervasive support needs and meaningful lives. The data were analyzed inductively to focus on and understand how the participants perceived their involvement in their young adult children's post-school experiences (Bogdan & Biklen, 2003).
Once we identified the participants through the systematic process of coding and rating their semi-structured summary profiles, the first and third authors open-coded their interview transcriptions. We coded line by line, using HyperRESEARCH 3.03 qualitative analysis software to help organize the data and facilitate coding. The guiding focus was examining how parents were involved in their children's meaningful post-school experiences and how they perceived their involvement. We discussed and refined codes, resulting in 22 codes (e.g., high expectations, networking, trying new things, consumer-direction) organized by three categories (Services, Facilitators, and Strategies). Utilizing the HyperRESEARCH software, we analyzed category-specific reports which resulted in development of sub-categories (e.g., Services- Programs, Services- Staff, Attitudinal Facilitators, Resource Facilitators). We then refocused analysis on the broader level of themes rather than codes by examining the relationships between and among the codes, sub-categories, and categories (Braun & Clarke, 2006). Ultimately, we identified the overarching theme of active parental involvement and reorganized the codes into three new categories that more accurately reflected their specific involvement. For purposes of comparison with the remaining families from the initial study whose profiles were systematically determined to be at Levels 2 and 3, the first and fourth authors used the same codes and process to independently recode their interview transcriptions.
The parents in the current study were active in their children's post-school experiences as fierce advocates and creative problem solvers. They strove to achieve what they considered to be the most meaningful lives for them, describing that they often challenged existing service options to do so. The active involvement of parents included three participatory sub-themes, based on our coding categories, which contributed to their success: a) attitudinal facilitators, b) advocacy efforts and perceptions, and c) strategic actions. Table 2 indicates the differences in representativeness of these types of participation for the parents in this study and the remaining parents from the initial study.
As a facilitator of developing such active and typical experiences they found to be meaningful, the majority of parents (n = 7) explicitly stated that, first and foremost, they held high expectations for their children. They were not always sure of their children's preferences but believed them to be on par with others their age, as Arthur's mother explained: “Arthur wasn't able for years to tell us what he wanted, but we just gave him the benefit of the doubt and tried to make life as typical as possible.” Other parents similarly strove to support their children to engage in meaningful experiences comparable to their peers. Thus, holding high expectations meant the parents focused on what was typical for people their children's age (n = 6). For example, since most young adults work, the weekly schedules of three fourths of the young adults did include paid or volunteered work opportunities. Arthur and Maggie each had their own businesses. Others volunteered in their interest areas. Some focused on social experiences in the community because they found it too difficult to develop supports for work.
Focus on interests
Guided by their high expectations, the parents focused on developing busy schedules for their children filled with a variety of activities their children liked. Most parents made explicit comments about focusing on their child's interests (n = 7). They felt their children's activities were meaningful by adhering to this focus. Grace's mother and Maggie's mother each emphasized the focus should be their daughters' interests rather than the parents' and DSPs' schedules. Similarly, Jackie's mother explained that their motto, was, “It's not just about Jackie, it's all about Jackie.”
Besides therapies, the young adults' schedules included individualized activities in the community. Over half of the parents (n = 5) ensured the flexibility to take advantage of natural opportunities such as going to the park on a sunny day and attending a concert. Other activities included shopping, watching movies, engaging in physical activities (e.g., working out in a gym, hiking), hanging out with nondisabled peers (e.g., in a bar, at parties), and taking college classes. Sami and Mason attended day programs each day and engaged in individualized activities afterward. Sami's mother was searching for employment to replace the day program, and Mason's mother explained that the “…recreational, social piece is probably a bigger part of his life than his day program.”
Willingness to try new things
As another critical facilitator of meaningfulness, all of the parents described being open to trying new activities or support arrangements. Many, like Arthur's mother, tried new things because of the high expectations they held: “Don't settle for less. Put yourself in that person's shoes and think about what you'd want to be doing, and if they can't tell you, what's the harm in trying new things?” Because of their high expectations, the parents did not predict or assume a new idea may be unsuccessful; rather, they remained open to all possibilities and creative solutions. For example, Mason's mother asked the university band leader if he could join the band despite not playing an instrument. She thought he would enjoy being with his peers in the social context of sporting events, and it fit her focus on maximizing inclusive engagement in community experiences. The band leader was also willing to try this, and it worked out better than either could have hoped. Mason's mother described that he loved going to games with his peers, and the band members asked Mason to join the pep squad as well.
Advocacy Efforts and Perceptions
The parents' involvement as consistent and resilient advocates in their children's post-school experiences was characterized by three critical components.
Feeling responsibility for success
All of the parents emphasized that they were the determining factor in their children's meaningful post-school experiences, either describing their specific efforts leading to successes or explicitly stating that they made it happen on their own. In response to the adult services case manager who suggested what Mason's program should look like, Mason's mother described, “I came up with an alternate life. I said, ‘This is what I'd like his life to look like.'… So, I pretty much did it.” Several parents anticipated focusing on post-school outcomes for a year or two and then returning to work once things were established, but were still involved due to staff turnover and the time it took to achieve desired outcomes. Several parents felt if they stopped directing the DSPs, the meaningfulness of their children's days would deteriorate. Sami's mother clearly stated her perception of her role in her daughter's post-school outcomes: “We've still got to carve it out. We had to make it be a success.”
Persistent advocacy in the face of rejection
Most of the parents (n = 6) described continuing to advocate for what they wanted for their children even when told it was not possible by professionals. They made calls, got on waiting lists, and networked with others. Sami's mother encountered adult services professionals telling her things related to federal law and state regulations that were wrong, resulting in her guiding perspective: “My biggest piece of advice to other parents is just because somebody tells you this is the way it is, you don't have to believe it.” Mason's mother shared this motivation, as she described, “Always expect what you want from them to happen, and don't slow down or stop because someone else says that they can't do it, even the professionals.”
Experience in the field
Most parents (n = 7) were employed or had experience in the disability field and thus possessed knowledge and skills to navigate the adult service system as effectively as they did. For example, Devon's father, who was an occupational therapist (OT) himself, explained, “It helps that my wife, Lisa, is very involved in disability rights. In fact, essentially her job is to make sure that people with disabilities get what federal law says they should so, immediately, that is a real help.” Sami's mother established a Microboard (Wetherow & Wetherow, 2004) to support her daughter's post-school outcomes and described that running it takes “a lot of administrative oversight on my part.” Thus, she was grateful to have the professional experience required of such an undertaking as a medical researcher. Grace's mother was also an OT, and Kyle's mother worked directly with people with disabilities. Jackie, Arthur, and Mason's mothers all had attended a Partners in Policymaking leadership training, and Arthur's mother worked in that area. Based on their experiences, they stated it was critical for parents to figure out what supports were available and what they needed and to get on any lists to obtain necessary supports as soon as possible. Unfortunately, as Kyle's mother described, “A lot of people don't have the resources to figure out what to do.”
Maximizing independence from parents
Beyond their advocacy, the parents enacted specific strategic actions that were critical components of their successes. Each of the parents valued and actively sought out ways that their children could maximize independence by increasing time with staff and peers while decreasing time with parents. The critical facilitator of independence from parents was maintaining consistent and high quality direct service providers (DSPs). The parents achieved this by hiring young DSPs and utilizing employer authority to hire their own DSPs. Half of the parents described DSPs being with them for at least four years. All of the parents emphasized hiring young DSPs. Over half of the parents did so exclusively (n = 5) while two parents also employed middle-aged DSPs, and Arthur's mother hired young DSPs when he was younger. The parents desired young staff because they viewed them as age-appropriate peers to spend time with who would be motivated to support their children to do what other young adults were doing. Maggie's mother valued this: “So, the young women have a good perspective on what's quality in Maggie's life, and they find ways to support that.” Additionally, some parents sought out college students in related fields (e.g., occupational therapy, special education) to benefit from their professional knowledge, while other parents valued young staff precisely because they were inexperienced.
The parents utilized several strategies to hire and retain staff members, but none were more important to them than having employer authority—the ability to hire and fire their DSPs—which allowed them more control. All of the parents possessed employer authority and most (n = 5) had budget authority which let them increase staff wages, something they believed directly resulted in greater longevity. Some parents (n = 3) supplemented wages through a disability trust or private funds. Though they believed it to be critical, the parents also recognized the additional responsibilities of participant-direction as Sami's mother described: “It's probably another half-time job that I do in the evenings.”
With support from consistent and quality DSPs, these young adults were quite independent. Three young adults lived outside of the family home. With his sister as his roommate, Arthur lived in a house his parents bought using Home of Your Own (Klein et al., 2000) funding. Arthur's mother explained that this was a longtime goal: “So we always had this vision of Arthur being on his own as much as possible, but … he's not really a rule follower so I knew it would have to be on his own terms in his own place.” Jackie lived in her own apartment that her parents purchased with a live-in DSP from 5pm-8am and another from 8am-5pm. They supported Jackie on alternating weekends, and Jackie spent one weekend per month with her parents. Grace moved into her own apartment on her parents' property when she was 21 years old. Grace's parents built the apartment because they felt strongly that Grace should have her own privacy and adhere to this typical rite of passage into greater independence as her two older sisters did.
Facilitating social opportunities
The majority of parents (n = 7) described proactive and intentional efforts to maximize opportunities for social interactions with peers in the community as the foundation upon which friendships may develop. They engaged in an informal, two-stage process of facilitating social opportunities for their children. First, they strove for schedules in which their children spent as much time as possible away from home and in the community with others. Because this was often with staff members rather than unpaid peers or friends, the second stage was facilitating more natural connections and social opportunities once there was an established community presence. Sami's mother taught Sami's young DSPs to focus on these opportunities: “They help invite people, respond to invitations, and decide what's worth doing and what isn't.” Devon and Arthur each frequented local pubs, interacting with the other regulars and some employees. The parents focused their efforts on increasing the quality and quantity of these social opportunities, not solely on improving their children's social skills. Some adults did have friends, though most interacted predominantly with paid, but similarly-aged, staff. This was the one area these successful parents perceived to be the biggest challenge because the outcome did not depend solely on their efforts.
This study examined parent involvement in meaningful post-school outcomes of young adults with pervasive support needs and limited functional communication. The findings included active parent involvement that the participants perceived to have resulted in their children's meaningful post-school outcomes. Several findings stand out as either confirming or extending extant research.
First, the young adults described in this study had achieved, or were in the process of achieving, their preferences for inclusive and self-determined adult lives. That this group of young adults with pervasive support needs did so successfully portrays what is possible for those with the most significant support needs. As in Shogren and Broussard's (2011) interview study about perceptions of self-determination by adults with ID who could speak, the young adults in this study also needed support to achieve their goals. Thus, our study extends their finding of “success with support” to those with pervasive support needs. This critical finding highlights a common misinterpretation that self-determination is characterized by independent performance of behaviors or self-sufficiency (Wehmeyer, 2005). The participants' children needed supports throughout each day, thus acting volitionally as the causal agents in their lives required their parents to engage in sensitized listening (Olney, 2001) in order to interpret their preferences (Brown, Gothelf, Guess, & Lehr, 1998). Even when the parents weren't sure of their children's preferences, they were guided by their attitudinal facilitators emphasizing high expectations, their children's interests, and what was typical for someone of the same age. The adults' lives included individualized goals and supports that were reflective of Henninger and Taylor's (2014) broadened criteria for post-school success that emphasized family involvement and individualization based on support needs, such as focusing on a purposeful role in society but not necessarily paid employment.
Second, the participants felt they were the deciding factor in their children's post-school successes and that they had to be. Indeed, we found that all of the parents were directly involved as fierce advocates, visionaries, networkers, and creative problem solvers. They focused on developing busy schedules with a variety of meaningful, typical, interest-based activities, and they were willing to try new things to achieve their goals. Notably, they also had extensive knowledge and experience in the disability field. As such, the participants were thoroughly empowered parents who took an active role in making things happen to achieve desired post-school outcomes. Prior research indicates that positive adult outcomes in community participation, independence, and employment result from strong parental advocacy and high expectations (Carter, Austin, & Trainor, 2012; Roush, Fresher-Samways, Stolgitis, Rabbitat, & Cardinal, 2007; Verdonschot et al., 2009). High expectations by parents are related to positive academic and social outcomes by adolescents and young adults with disabilities (Carter et al., 2014; Doren, Gau, & Lindstrom, 2012). Our findings extend these results to young adults with pervasive support needs. Parental advocacy is enhanced by knowledge of the field as it can lead to the utilization of non-traditional supports, such as self-employment (Curtis et al., 2009). Several parents in this study successfully utilized such approaches.
While their collective example is informative, the participants possessed resources to advocate for their children, navigate the adult service system, and creatively solve problems that other parents do not. Prior research suggests it is more tenuous to achieve such outcomes without these resources. Adults with IDD who did not have vocational or educational daytime activities were more underserved by the service system and had parents who were less able to provide adequate care for them (Taylor & Hodapp, 2012).
Third, the direct service providers (DSPs) also played critical roles in the daily enactment of parent visions and young adults' post-school outcomes. DSPs have been perceived as gatekeepers to positive or negative outcomes and experiences for adults with pervasive support needs (Curtis et al., 2009). However, finding and keeping DSPs has challenged families for decades (Larson & Hewitt, 2005). Poorer outcomes in community participation for adults with IDD result when families are without needed supports (Hewitt & Larson, 2007). Consistent with prior research (Gross, Wallace, Blue-Banning, Summers, & Turnbull, 2012), the parents in this study utilized participant direction to transform the challenge of maintaining quality and consistent DSPs into an asset to facilitate progress toward desired outcomes. Half of the participants employed DSPs who had been with them for at least four years. They all possessed employer authority which they used to target young DSPs, and many possessed budget authority- or utilized a disability trust or private funds- to pay their staff higher wages.
As in all research, there are limitations to be considered and addressed in future work. First, the sample is small and not representative of the general public. However, the purpose and benefits of qualitative research are not in the generalization of findings but rather the in-depth understanding of participant experiences and perspectives (Bogdan & Biklen, 2003). A larger and more diverse sample of families may result in additional experiences and perspectives. Second, the findings are restricted by the methods used. Multiple interviews may allow for more in-depth understanding of parents' perspectives. A longitudinal design would examine the process of achieving meaningful post-school experiences in greater detail. Third, we interviewed parents because their children demonstrated limited functional communication. We chose this population to address a need in extant research. Future studies should certainly include the perspectives of individuals with disabilities themselves.
Despite these limitations, the findings add to our understanding of post-school outcomes for young adults with IDD and pervasive support needs. Ultimately, the findings point to the critical importance of parents—and DSPs—in achieving meaningful post-school experiences. First, the successes of the young adults in this study can be shared to let others know what is possible. Expanding and individualizing the vision of success is critical for both the transition process and post-school outcomes (Cooney, 2002; Henninger & Taylor, 2014). Moreover, such successes should not be limited to adults whose parents have the resources, knowledge, and experiences to advocate for and achieve them. To do so requires a fundamental shift in service provision from schools and adult agencies to focus on individualization more than procedural compliance.
Second, continued improvements in service provision from schools and adult agencies to develop individualized supports would lessen the reliance on parental advocacy for positive post-school outcomes by young adults. Because parental participation is critical to post-school outcomes, especially in employment (Test et al., 2009), school-based transition staff should work diligently to support all parents and guardians to be involved. This may involve teaching them about the purpose and process of transition, as well as engaging in flexible meeting arrangements (e.g., meeting before or after school, video conference). Service provision from adult agencies should also strive to improve in ways that reduce reliance on parental advocacy for meaningful post-school outcomes. Our findings back continued efforts to embrace the need for skilled workers who are adequately compensated (Hewitt & Larson, 2007). Skilled DSPs can learn to take over for parents by holding high expectations; trying new things; developing interest-based and age-appropriate community experiences; and implementing individualized supports that promote the young adult's self-determination. Additionally, adult agencies should increase efforts to teach all parents about the option and process of participant direction. Efforts to reduce required paperwork or to better prepare families to complete it would likely reduce the skepticism with which some families approach participant direction (Gross et al., 2012). The families in this study utilized participant direction to maintain quality and consistent DSPs who effectively enacted individualized supports for living inclusive and self-determined lives.
In conclusion, the findings of this study were both encouraging and disheartening. While most of the parents were still advocating for specific improvements, their young adult children were active and engaged in meaningful ways with others in the community both formally and informally. However, their successes required active involvement by their parents in multiple roles. We hope that these roles can be instructive to others, though we also recognize that meaningful post-school outcomes should not rely so heavily on parental advocacy.