Managing service delivery systems and the role of parents during their children's transitions.

Adolescence is a time of rapid change for young people and their families. It is a time of physical maturation, psychological growth, and the development of life plans. Teenagers must cope with a variety of adaptive tasks during this transition including the emergence of increasing self-direction and independence from family, the creation of an expanded self-concept, the development of social and romantic relationships, the definition of an occupational identity and the pursuit of vocational interests (Germain, 1991). This role change from adolescent to adult often includes graduation from school, employment, greater responsibility, and becoming more economically and socially independent.

Adolescents with disabilities face the same multitude of changes, yet encounter additional challenges making this transitional period more troublesome. Recent studies have shown that outcomes for young adults with disabilities fall significantly short of their non-disabled peers. These outcomes include higher drop out rates (U.S. Department of Commerce, Bureau of the Census, 1995), low attendance rates in post secondary schools (Horn & Berktold, 1999) and high unemployment (Louis Harris & Associates, 1998). In addition, youth with disabilities may rely more on family members rather than peers for social interaction (Dane, 1993). Limitations in social activities may ultimately affect self-esteem and self-concept in a negative way and thus create social isolation (McGraw-Schuchman, 1994). Finally, research indicates that individuals with disabilities also demonstrate low levels of self-determination (Wehmeyer, Agran, & Hughes, 1998).

This enormous period of change has an impact not only on the young adult with a disability, but also on their families. This particular research chose to focus on the role of family members, specifically parents, during their young adults' transitions. Since the 1980s, research has helped rehabilitation professionals to understand the nature of the transition process for youth with disabilities and their families. The often-cited research by Ferguson, Ferguson, and Jones (1988) identified three simultaneous transition processes that families experience as their children with disabilities planned to leave high school. These included (a) the bureaucratic transition defined as the change from the special education system to the adult community service system; (b) the family life transition defined as the disruption of established routines needed to accommodate the changing life of the individual; and (c) the status transition, which involves all of the cultural implications that accompany the move from child to adult (Ferguson et al., 1988).

The convergence of changes in personal status, family life, and systems relationships (Ferguson et al., 1988) makes the transition from school to adult life a time when family members explore and adopt a variety of unique roles. Through an extensive review of the literature, Hanley-Maxwell, Pogoloff, and Whitney-Thomas (1998) found that family members often take on the roles of organizational member and political advocate, service developer, the recipient of professional decisions, teacher and learner, family member and decision maker, and their child's problem source. Parents have also been found to continue in a nurturing role as they facilitate the transition from school-to-work by proactively engaging in work readiness activities, supporting education through interaction with school, and promoting good work values (Way & Rossman, 1996). Lehmann (1998) found that mothers of students with disabilities played a much more active role in the lives and transitions of their children and that they did not see their support roles as diminishing over time, compared to mothers of children without disabilities. Finally, Thorin, Yovanoff, and Irvin (1996) found that parents of young adults with disabilities wanted to create opportunities for independence while assuring safety and wanted to provide stability and predictability while remaining flexible to meet the child's ever changing needs. In addition, findings indicated that parents sought to create a separate social life for their child while needing to be involved in the facilitation of it and wanted to avoid burnout while feeling they needed to do everything for the young adult. The literature suggests, therefore, that while normative expectations for decreased family involvement exist, parents of youth with disabilities often struggle with conflicting roles. This conflict is especially true in the face of the bureaucratic transition that does not often exist for youth without disabilities (Whitney-Thomas & Hanley-Maxwell, 1996).

While many studies have solicited families' perspectives q of their roles, research appears to fall short when examining the role of parents specifically within the context of the bureaucratic transition process. Parents must manage the broad range of supports from schools including post-secondary education options and vocational training. This management may be complicated by the combination of community services that provide independent living or community participation supports. In addition, parents must begin establishing linkages with agencies and organizations that provide adult supports. The current study examined the role of parents of young adults with disabilities as they negotiate child and adult service systems and learn to manage new rules during this bureaucratic transition. The following research questions were addressed:

* What roles do parents of young adults with disabilities play in a bureaucratic transition planning process?

* What is the meaning parents ascribe to the roles?

Methodology

Sample

The study sample was comprised of 30 parents of young adults with disabilities who have identified needs for support from health care and adult service agencies (Department of Mental Retardation, Vocational Rehabilitation) after exiting high school. Parents with varying ethnic and linguistic backgrounds, resided in urban, suburban, and rural locales. Participant's children had a range of disabilities including physical disabilities such as cerebral palsy and spina bifida, learning disabilities such as attention deficit disorder, and cognitive disabilities such as Down syndrome. Twenty-three parents were Caucasian, two were African-American, and five were Latino.

Data Collection

There were two means of data collection for this research project. These were the use of focus groups and case studies.

Focus Groups. Participants were recruited for the focus groups through parent support groups and word of mouth. Five focus groups were held with parents in total. Groups were conducted across an entire northeastern state to reflect local differences in parent experiences. Focus group methodology was chosen to uncover and understand parental roles through dynamic discussions between participants who share common experiences. See Table 1 for focus group locations and participation.

A focus group protocol was developed to loosely structure the conversation and encourage discussion. These questions were used to start the conversation, but participants were encouraged freely discuss their individual experiences and interests (Knodel, 1993). The focus group protocol included questions about supports utilized and barriers encountered in the transition planning process and parents' hopes and dreams for their children's futures. Upon informed consent, focus group discussions were audiotaped for later review. The focus groups were informal and lasted about 90 minutes.

Case Studies. Several of the focus group members were asked to participate in a subsequent case study. The purpose of the case studies was to gain a more personal, in-depth look at three families at various stages during the transition process in order to understand the unique experiences of individuals that might be lost in the focus groups. Table 2 describes the families profiled in the case studies.

The case studies were also structured by a protocol that asked parents to describe their (a) family and young adult with a disability, (b) hopes and concerns regarding their children's futures, (c) experiences in planning for the future, (d) planning resources (formal and informal), (e) aspects of these resources have been helpful or not helpful, and (f) the role of the young person in the planning process. Participants were encouraged to talk freely and describe their families in as much detail as they felt comfortable sharing. Each interview lasted 60 to 90 minutes. The conversations were audiotaped and transcribed with the participants' permission.

Data Analysis

The data from the focus groups and in-depth case study interviews were analyzed together. Coding of data from focus groups and interviews began with a reading of all field notes and transcripts followed by the development of code categories and labels for those categories. During the coding process, the researchers met to discuss the assignment of codes to text and general themes as they emerged. Codes were added and modified as needed and data were re-coded as the interactive process occurred. A reconciliation method was established to reach consensus on the coded text. Once initial coding was completed, the data were sorted into broader categories and the analysis of over-arching themes began. While analyzing the themes, the researchers met to share their sorted data and develop "memos" (Strauss, 1987) based on their independent analyses. The memos served to focus the discussions of themes, codes, and research questions and became the foundation of the research findings.

Findings

Data analysis revealed significant challenges inherent in the bureaucratic transition and a series of parental responses to these challenges. Parents described the bureaucratic transition as a complex relationship between (a) negotiating service delivery systems, (b) coping with day-to-day needs, (c) living with the idiosyncrasies of urban or rural locales and (d) feeling uncertainty about the future. The tasks undertaken by these parents to meet these challenges reinforced to them the importance of the central role they play in the lives of their young adults with disabilities.

Challenge: Systems

The clearest challenge faced by parents trying to plan for their children's transition from school to adult life had to do with finding, accessing, and relying on service delivery systems designed to support them. Parents perceived service delivery systems as (a) inconsistent, (b) complex, and (c) unresponsive.

Inconsistency. Parents depicted service delivery systems that are generally unpredictable. They explained that effective service delivery is often dependent upon a specific situation or individual. For example, parents illustrated that, while their child was in school, positive, dependable systemic support was contingent upon a particularly good teacher, a special education director, or a classroom aide. Dependence on specific individuals for quality services was reported across systems. Parents noted that good medical care was dependent on a good relationship with a particular doctor, personal care assistant, or therapist.

Comments such as these revolved around the notion that good service delivery is circumstantial and thus erratic, leaving parents with the expectation that crucial services can be lost at any moment. The unpredictability created ongoing worry that a supportive service can change from year to year, disappear altogether, or even become adversarial. One parent noted that it was critical to document all pertinent classroom activities in the event that her child's aide was to abruptly leave. Another parent recalled that she fought "tooth and nail" with a former special education director, while she welcomed the "totally different" supportive environment created by a new one.

Complexity. Parents described an additional burden of having to maneuver through and between what they perceived as complex service delivery systems. Parents noted that they not only find it challenging to connect to appropriate planning services, but also they are unaware of the existence of most resources. Accentuating this perception of complexity is the dilemma that information is typically not volunteered and services are almost never advertised; yet the parent must be aware of how to access them. The end result that parents described was haphazardly wandering through systems, ultimately "falling into " or uncovering resources in an inefficient and coincidental manner.

Parents also perceived complexity in service delivery systems due to a lack of coordination between agencies and schools. Parents expressed the need to have increased and automatic agency involvement in the school transition planning process. A lack of both communication and joint action between schools and agencies created frustration among parents trying to plan for transition. Parents recognized that their children's transition needs crossed both agency and school lines, yet they lacked confidence that schools and agencies were accepting equal responsibility. As one parent noted, "[the Vocational Rehabilitation system] is good, but trying to bring them into the school planning process is nearly impossible. [The] parent has to fight with both parties to get them to work together."

Unresponsiveness. Parents described feeling challenged by service systems that they perceived as unresponsive. Although occasionally the system was perceived as adversarial, parents mainly characterized this unresponsiveness as an inability to respond to their children's needs rather than an intentional desire to be unreceptive. They acknowledged that systems were over-burdened, yet they perceived unwillingness on the part of professionals to even try to accommodate their children's needs. One parent described this unwillingness in a scenario at her son's school regarding the purchase of a new computer:

   "[the school] won't call and say: 'Gee, I think your son
   needs a computer, we're going to buy him one.' You [the
   parents] have to say: 'He needs a computer, and you have
   to purchase one for him.' Then they'll say: 'If we buy
   you one we'll have to buy one for everyone else' and you
   reply: 'everyone else can pick up a pencil and write!"

In discussing the role of school systems in transition planning, parents described not only an unwillingness, but also an inability to accommodate their children's needs. They described the schools as lacking resources, inaccessible, or not having the level of staffing support required to go beyond standard educational curriculum. Parents indicated that schools are not fully equipped to help with career counseling and vocational opportunities. As one parent noted, "schools are so busy trying to do all the educating and schooling" that it was nearly impossible to fully address all of her child's transition planning needs.

Because of these perceived challenges, families often said that their individual needs were not being met. In addition, connected to the perceived inconsistency of service delivery systems, parents often articulated positive feelings about specific individuals representing various health and disability-related service delivery systems, but generally related negative feelings about the systems themselves. Parents made a distinction between service delivery systems and the individuals who staff those systems. Thus, dozens of cases were reported in which an individual teacher, social worker, agency staff member, or doctor was found to be exceptionally helpful and supportive, while systems were generally described as inconsistent, complex, and unresponsive. Parents concluded that disability-related service delivery systems were flawed, despite the efforts of many individuals on the "front lines" who appeared, in fact, the opposite: competent, willing to help, and responsive.

Challenge: Day-to-Day Living

Parents explained that the challenges of day-to-day living virtually precluded any meaningful planning on their part for their children's futures. As one parent noted, "surviving today is the focus. [It] makes looking ahead and planning for the future difficult." Parents reported feeling consumed by the ongoing challenges of managing everyday responsibilities and obligations, describing them as a full-time job. Parents must become their children's case managers; they juggle multiple school-related meetings and medical appointments and coordinate with vendors for medical equipment and supplies. Meanwhile, they keep on top of the typical household chores. Noting that there is a financial side to the family's coordination role, one parent commented that the worry associated with a current hospitalization, a spouse's inability to work given the needs of their child, and the financial uncertainty of the future made transition planning an overwhelming task.

Challenge: Location

Family place of residence, whether urban or rural, entailed specific challenges related to managing systems. Even though the northeastern state is small geographically, it is sharply separated by an eastern area dominated by a large metropolitan city and a western area that is predominantly rural. In the rural locales, the geographic discrepancies were most pronounced. Parents from rural locales said that there were simply fewer service options available in these communities and reported the difficulties of traveling long distances. A few parents have even contemplated moving closer to the large metropolis to meet the service needs of their children. In particular, parents noted that there were fewer recreational service opportunities for their children in rural areas. As one parent noted, "because the numbers of kids with disabilities are small around here, institutions such as the Y are less willing to make special arrangements."

In addition, issues around negotiating transportation systems were commonly raised by parents in the study, although specific difficulties with transportation seemed to vary depending on the family's geographic location. Parents from urban areas described unreliable transportation, whereas those from rural locations simply noted a lack of transportation resources. One parent recalled the need to rearrange her daily routine to insure that her child attended school because transportation coordinated through the school system was so undependable.

Challenge: Uncertainty

Parents clearly recognized the need for planning for the future of their young adult, but their effectiveness, and at times even their motivation for planning, were tempered by the uncertainty of what the future will hold. A distinction emerged from the data between the development of detailed plans that relied on specific resources and services, which was widely seen as futile, and the development of more general plans and preparation for the future, which was regarded necessary and prudent. The more general plans and preparation involved their children acquiring skills, expanding their social and vocational capacity, developing a support network, and exposing their children to varied vocational and life experiences.

In discussing the availability of formal resources and services, one parent articulated a common sentiment, "there is no sense planning for the future because you don't know what you're going to get." Another described the consequences of this perspective as she said, "I'm kind of downshifting my expectations in terms of what his living arrangements will be when he turns 22. [This is] absolutely more the result of the availability of support services than [my] expectation of his potential." Parents envisioned an abrupt end, at the age of 22, to the school environment. As one parent noted, "there are no guaranteed resources out there for kids once they reach 22, unless they're a ward of the state." Another parent stated the problem this way; "the schools carry families through to 22, but after that families are out there alone."

Of particular concern for parents in the long term is what will happen after they are no longer able to provide for their son or daughter. This question surfaced frequently and in many different manifestations from discussions of wills and trusts, to a mother who joked with her son while helping him on with his leg braces and said, "who is going to do this when I'm not around?" The young adult's long term quality of life was clearly an important and deeply felt theme for parents, and was often coupled with a fear that siblings would have to take on responsibility for care. One parent expressed the sentiment in this way, "my son is going to need significant care throughout his life. I can't make that my daughter's problem."

The Role of Parent as Linchpin

As a direct reflection of the many barriers to transition planning described by parents in the study, a single overarching theme emerged from the data. Parents perceived themselves as a linchpin of the many overlapping systems and resources which affected their children. This dynamic role is multi-faceted. The role of linchpin involved actively holding together all the elements of many complex systems surrounding their family and their children's transition planning processes. As linchpins, they are the stable providers for their children in the face of the significant systemic, day-to-day, situational and emotional challenges. Parents maneuvered through complex service delivery systems, ensured adequate educational opportunities, and managed day-to-day responsibilities, while caring for and supporting their family. This role required systems management, an ongoing consciousness of the need to ensure an independent future, and constant advocacy. Diligent advocacy is not only stressful but also requires a persistent assertiveness, which can be exhausting. As one parent stated, "it's draining though, to have to continually advocate, you can do it nicely, but it's draining."

Because parents become the linchpin that holds together all the complicated facets of their children's lives, there was a perception that if the parent is absent at some point, all of these systems will fall apart. This fear further undercuts parents' confidence about trying to foster independence in their children. Parents clearly expressed hopes for secondary education, employment and independent living options and opportunities for their children, yet at the same time expressed insecurity about letting go. Parents did not feel confident enough in existing systems and other supports to trust that a formal, cohesive, coordinated transition planning process, which truly prepares their children for the realities of adult life, will occur without them.

Resources and Strategies for Negotiating Systems

Parents were asked to detail effective and helpful strategies in managing systems and were also asked to note additional services or resources they felt they lacked, or wished they could have to increase their success at transition planning. First, parents discussed the importance of their own advocacy. Although advocacy was described as difficult and frustrating, parents saw it as a requirement in order to overcome challenges and gain access to the services they and their children needed. In addition, parents saw the benefits of connecting with people who have shared the experience of having a young adult with a disability. Parents described finding comfort in learning from others who have had common experiences and they valued hearing other people tell their stories, giving and receiving advice, and offering mutual support. Informal networks and supports were also seen as a way to alleviate some of the pressure associated with the ongoing self-advocacy. As one parent noted, "parents learn from experience ... doing and learning from others who have done it before us. Parents need to support each other and teach each other how to be good advocates." Finally, parents commented on the helpfulness of specific individuals who have made particular differences in their lives. Many of the individuals mentioned were professionals working within systems: case managers, counselors, teachers, or doctors. Other special individuals mentioned were family members or friends who have been helpful in offering advice, providing respite, sharing experiences, and lending perspective on the day-to-day challenges.

When asked what resources and strategies they lacked, one focus group in particular addressed difficulties in accessing information from systems. They offered suggestions including newsletters, information hotlines and directories, and even a service that would offer information and advice on medical professionals. Parents also expressed the need for long-term case management support for transition. Parents envisioned these case-workers becoming involved while their children were fairly young, and developing a relationship with the family prior to formal transition planning. As one parent noted, "I wish that I had, first of all, a state worker from the very beginning so that when [my daughter] got older, pretty much everything was in place."

Parents visualized a dependable individual who would assess career potential and guide their children through the process of preparing for life after school. They described an individual who would focus on developing vocational opportunities in the community while remaining involved in all school-related initiatives around transition. Parents wanted the case management system to establish uniform and constant opportunities, so planning would flow more naturally. One parent envisioned an individual who would "negotiate [our son's] vocational and housing and community needs on a regular basis in the same ways the school helps now ... I would also like to know that person, and that person to know [our son] and our family several years before that happens." This emphasis on dependable service provision is not surprising given parents' perceptions of systemic inconsistency.

Finally, parents described a need for system supports to alleviate some of the day-to-day challenges they face. Some of the supports mentioned were respite, specialized nursing and personal care attendants, additional and more reliable transportation, and mentoring programs. It is possible to conclude that these simple supports might either enable parents to do their job as linchpin more effectively or allow them to relinquish this role depending on their preference.

Implications/Discussion

This research emphasized the challenges that parents face during their young adults' transitions with specific regard to managing service delivery systems. In addition, it focused on the parental role that emerged as a result of managing these systems. Findings revealed perceptions of inconsistent, complex, and unresponsive systems. In addition, parents reported that management of daily obligations precluded planning and that fewer transportation and recreational system support options existed in rural locations. Finally, there was an uncertainty about the availability and reliability of systems in the future. The central outcome of such systems-related challenges and limited supports is the parental role of linchpin. In this role, the parent negotiates and manages the many complicated and overlapping systems. Although this linchpin role can be useful, a more typical pattern of development would include a decrease in parental control and a focus on greater autonomy of the young adult. In the case of the parent assuming a linchpin role, he or she remains engaged at a time when the child should be attempting to negotiate a more independent life. As a result, this linchpin role can conflict with the goal of increasing self-determination and independence for the transition-age individual.

This linchpin role, therefore, may contribute to an unbalanced relationship between the parent, individual with a disability, and the service system (Ferguson, Ferguson, Jeanchild, Olson & Lucyshyn, 1993). Ferguson et al. (1993) describe this unbalanced relationship as either perceived excessive family control from the perspective of the service provider or perceived professional influence from the perspective of the family member. In either case, increased professional and family involvement diminished the role of the individual with a disability with regard to his or her own service delivery decision-making. A more ideally balanced relationship would have the individual with a disability having more influence and contribution while developing a more prominent adult status role (Ferguson et al., 1993). Given the increased involvement of parents of young adults with disabilities, more emphasis may need to be placed on facilitating and supporting young adults to become their own linchpins. Consideration must be given to the transfer of power and leadership from parent to young adult. The following implications are offered to assist families with this transfer of power and leadership, allowing young adults to be at the center of their own transition planning processes.

Building Informal Supports

Parents should be encouraged to connect with people who have shared the experience of having a young adult with a disability; the development of such relationships should be facilitated. Systems professionals can invest in, and encourage, informal networks of support, such as family-directed outreach projects or parent-to-parent networks. Similar to the findings of Ferguson et al. (1993), the establishment of informal community supports can be viewed as a way either to substitute for the absence of service supports or to alleviate some of the pressure associated with managing complex service delivery systems. In addition, emphasis should be placed on building the support networks of young adults. These networks would enable them to gain independence and eventually to carry on without the parent in the picture. Exposure to a variety of life and social experiences creates opportunities while they are available and acts as an investment. Such an investment can hedge against an uncertain future, build a foundation for autonomy, and ultimately assist them in becoming their own linchpins.

Continuity in Case Management

Professionals, such as case managers and other support personnel, should acknowledge the importance of long-term relationships with families. Such long-term, consistent service delivery would allow the development of stronger relationships between the service delivery professional and the young adult and would increase the potential for a transfer of responsibility from the parent. Continuity of relationships is often contrary to the practice of state service systems that separate children's services and adult services. This practice thus necessitates a change in case managers at a time of when the young adult should be assuming a more significant role. This division also may affect the ability of case managers to provide a full spectrum of information about resources, since they are themselves compartmentalized in their experiences. Continuity in case management services should be considered crucial in supporting families effectively.

Person-Directed Resources

Policies and practices that afford families the ability to choose their sources of support should be considered. These policies and practices may include a clear opportunity to interview and select among case managers or to hire an advocate or case manager using flexible resources. The expanding emphasis on self-directed service delivery and bringing self-determination principles into funding policies has demonstrated that flexible person-directed resources can not only be more effective, but also be more economical (Nearney, Crowley & Kappel, 1995; Nearney & Shumway, 1996). To address parental challenges in accessing information, systems can broaden the ways they make information available including community guides, person-to-person strategies, the Internet, and telephone-based information and referral. These strategies can help families to use resources more efficiently to meet their own needs as directly as possible. The combination of these recommendations would create a more supportive systems-related environment for parents ultimately allowing them to transfer power to their young adults and facilitate their transition into the role of linchpin.

Building Young Adult Self-Determination

Greater self-determination lends itself to the young adult coordinating his or her own service delivery environment. Traditionally, however, facilitating a "manager" role for young adults with disabilities has been a challenge. Lehmann, Bassett, and Sands (1999) found that although teachers and mothers desired student involvement, "students were passive recipients of transition-related information and engaged only peripherally in transition-related activities" (p. 167).

Despite such findings, there are several strategies to consider. Facilitating increased decision-making power of the individual with a disability can build upon their personal control (Stancliffe, Abery, Springborg, & Elkin, 2000). Focusing on building self-awareness in the young adult has also been shown to facilitate self-determination. For example, Edelman, Schuyler, and White (1998) noted that elements of effective transition planning include the students' ability to identify the impact of their disability on their lives, determine what the impact of the disability would be on their post high school options, and develop and implement strategies to minimize or alleviate this impact in order to increase the opportunity for success. Additional strategies that support student self-determination include holding high expectations for students, preparing students for their transition planning meetings, allowing students to make decisions at these meetings, involvement of their personal support network, and providing opportunities for students to explore their communities and career interests (Thoma, 1999). All of these strategies work to increase the power for the young adult to take on more of the linchpin role while still in the high school setting.

The linchpin role may be crucial to overcoming transition-related barriers such as complex systems, an uncertain future, and management of the ongoing demands of daily life. However, the parental role of linchpin can shelter and remove the young adult from the systems and decisions that affect them. As parents assume the role of linchpin, it is imperative to support the transfer of power from parent to the young adult throughout the transition years.

Acknowledgement

This research was supported, in part, by project # MCJ-25HRW1 from the Maternal and Child Health program (Title V, Social Security Act), Health Resources and Services Administration, Department of Health and Human Services.

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Jaimie Ciulla Timmons John Butterworth

Institute for Community Inclusion Institute for Community Inclusion

Jean Whitney-Thomas Deborah Allen

Institute for Community Inclusion Department of Public Health

James P. McIntyre, Jr.

Boston Public Schools

John Butterworth

Institute for Community Inclusion

Deborah Allen

Department of Public Health

Jaimie Ciulla Timmons, MSW, Research Associate, Institute for Community Inclusion, University of Massachusetts, Boston, 100 Morrissey Blvd, Boston, MA 02125-3393 Email [e-mail]