Centers for Independent Living and their involvement with transition-age youth with disabilities

Abstract

BACKGROUND: Transitioning from high school to adult life is one of the most challenging times for all youth; however, this step to adulthood presents additional demands to individuals with disabilities. The role of adult service providers, such as Centers for Independent Living (CILs) in the transition process for youth has become more and more prevalent. Yet, little is known about the involvement of CILs and their partnership efforts with local education agencies (LEAs).

OBJECTIVE: This study explores the extent to which CILs are involved with serving transition-aged youth and collaborate with LEAs.

METHODS: This study consisted of a national survey. The sample included 198 CIL representatives from 38 states, Puerto Rico, and Virgin Islands that serve transition-age youth with disabilities.

RESULTS: Based on the study findings, it appears that CIL professionals see secondary transition as a priority; however, participation in transition initiatives and collaborative partnerships with LEAs remains relatively low. Furthermore, although the majority of study participants perceive CIL and LEA coordination as extremely important, almost a quarter of them report actual practices as poor or non-existent.

CONCLUSIONS: These findings are consistent with previous research on the importance and extent of CIL secondary transition services. Further research that would lead to practice-based initiatives to improve the secondary transition for youth with disabilities is needed. Obtaining CIL professional perceptions on promising practices and existing collaborative vehicles to promote better collaboration is sorely needed.

Keywords

Transition youth with disabilities Centers for Independent Living (CILs)collaboration rehabilitation

1 Introduction

Transitioning from high school to adult life is one of the most challenging times for all youth; however, this step to adulthood presents additional demands to individuals with disabilities. As a result, youth with disabilities lag behind their peers in many postsecondary outcome areas, including employment and independent living. For example, only 21% of individuals with disabilities report working full or part-time, compared to 59% of working-age people without disabilities (Diament, 2013; Wagner et al., 2007). Further, the National Center for Educational Statistics indicated that youth with disabilities were significantly less likely to hold employment two and three years after high school (Wagner et al., 2007). Additionally, achieving adult status has been associated with such markers as earning a degree, starting a job, leaving the family home and living independently (Benson & Furstenberg, 2006). Meeting these adult outcomes not only require certain levels of self-determination, but also the conditions to make choices, which is not always available for people with disabilities (Brown & Brown, 2009; Heller, Miller, & Factor, 1999; Wehmeyer & Garner, 2003).

While an overall shift in living conditions over the last half of the century has reflected significant changes for individuals with disabilities, independent living is still not an option for many of them, especially for individuals who face the most significant challenges (e.g., individuals with intellectual disabilities [ID]) (Cimera, Burgess, & Bedesem, 2014). For instance, as of 2011, the majority of individuals with ID (57.6%) lived and received supports in the home of a family member, while only 11.4 % of them owned or leased their place of residency (Larson et al., 2013). Other living options included congregate care settings (i.e. group homes) (26.5%) and host/foster care (4.2%). Moreover, Stancliffe et al. (2011) found that fewer than half of their study participants who were residing in non-family or adoptive service settings made their own choice about where to live (44.6%) or with whom (40.6%) to live. Their choice making was strongly related to level of ID, showing that the less significant a person’s degree of ID, the more likely the individual was to have choice.

As outcomes for youth with disabilities remain less than desirable, legislation such as the IDEA and the WIOA has targeted specific areas. For example, these laws focus on interagency collaboration to facilitate necessary assistance for youth with disabilities in order to achieve more positive results. As significant numbers of youth with disabilities prepare to enter competitive workforce, they will likely need support of adult service agencies to help create seamless transition to post-school settings. Unfortunately, interagency collaboration has neither been adequately defined nor utilized to maximize such partnerships (Oertle & Seader, 2015). The Vocational Rehabilitation (VR) system has received the majority of attention regarding collaboration with local education agencies (LEAs) in supporting student transition (Plotner, Strauser, & Shogren, 2011) in comparison to other adult service providers, such as the Centers for Independent Living (Oertle, Trach, & Plotner, 2013).

1.1 Secondary transition services of Centers for Independent Living

Centers for Independent Living (CILs) are consumer-controlled, community-based, cross-disability, nonresidential private nonprofit organizations that are designed and operated by individuals with disabilities that provide an array of independent living services (Rehabilitation Act of 1973 and its amendments). The framework of CILs was created during the Independent Living movement, which focuses on disability rights and the inclusion of individuals with disabilities into their communities (DeJong, 1979, Nosek, Zhu, & Howland, 1992). In order to address the independent living needs, CILs have traditionally been mandated to provide the following core services to individuals with disabilities: (1) individual and systems advocacy; (2) peer mentoring; (3) independent living skills training; and (4) information and referral (Nosek et al., 1992; Rehabilitation Act Amendments, 1998). Under the directions of legislation’s Title VII, Chapter 1, CILs provide advocacy and independent living skills training, as well as serve as a source of information and peer counseling to equip individuals with disabilities for transition into community life with a high degree of success (O’Day, Wilson, Killeen, & Ficke, 2004; Oertle et al., 2013). Therefore, CILs have potential to be critical service providers for students with disabilities transitioning to postsecondary environments.

In July 2014 when the Workforce Innovation and Opportunity Act (WIOA) was signed into law, CILs welcomed a new fifth core service of transition (www.advocacymonitor.com), which refers to transition from nursing homes and other institutions to community-based residences; and to facilitate the transition of youth with significant disabilities after completion of secondary education to adult life. Prior to this newer focus on secondary transition, CILs had taken on such other services as career exploration, skills training seminars, independent living workshops, organized community service projects, and summer internships with CIL support staff (Mazzoni, 2014; Wilson, 1998). CILs have also been reported to have specialized programs and activities, working at times one-on-one with youth in the school setting to aid them in planning for their future goals, with parents and youth on benefits planning and guardianship decisions including providing community resources and independent living skills instruction (Oertle et al., 2013).

CILs across the country are now mandated to implement youth transition services to improve transition outcomes for youth with disabilities; however, these organizations and their available resources are not thoroughly assessed, and the beneficial support for youth with disabilities is often not effectively communicated to key stakeholders (e.g., students and their families, local education agency personnel) (National Council on Disability, 2008). CILs can be critical partners in the transition process as they are unique in having established community relationships and are staffed primarily by individuals with disabilities (Wilson, 1998). Due the fact that CILs are staffed by individuals with disabilities, they naturally serve as successful role models to students with disabilities. Additionally, individuals with disabilities comprise at least 51% of the CIL’s board members who use their own backgrounds and experiences to insure that consumers receive essential services (Rehabilitation Act). Therefore, CILs have the flexibility to tailor their services based upon the needs of the community.

1.2 Inclusive practices are promising secondary transition services

CIL agencies are closely aligned with the IDEA transition elements of independence and self-determination, as they relate to the consumers they serve (Wehmeyer & Gragoudas, 2004). CILs’ legislative mission ensures that transition services are youth-driven, goal oriented and include all the necessary components for transition planning (Rehabilitation Act). Although limited published research on CILs’ contributions and collaboration with LEAs and transition-age youth is available, several researchers have observed the benefits of CILs’ inclusive practices to transitioning youth. For example, Mazzoni (2014) reported that many CILs coordinate with teachers and parents to empower youth to obtain the highest level of independence possible, including sensitivity and etiquette training to promote community inclusion. Wilson (1998) noted that CILs were readily positioned with community-based transitional support services in their fundamental core components to currently accommodate the youths’ transition requirements. After surveying CILs across the country, Lattin and Wehmeyer (2004) found that of 150 CILs that responded, nearly 50% indicated they provide transition services to youth with disabilities. These CILs reported providing a continuum of supports, such as self-advocacy and employment-related training. These findings are consistent with Tomita, Moffat, Usiak, and Moffat (2004) who observed that out of 630 CILs across the country, 50.8% of respondents indicated they also provide transitional services for youth. Tomita et al. (2004) go on to argue that CILs have tremendous potential for connecting youth to community programs and employment.

Although CILs demonstrate a strong capacity to play an essential role in transition planning, there is a dearth of information specific as to how CILs provide secondary transition supports (Wilson, 1998; Oertle et al., 2013). Also in 2004, Wehmeyer and Gragoudas (2004) cite a pilot project with a CIL and educators from a local school. The alliances’ collaborative efforts brought youths with disabilities into the CIL’s community setting and completed one session of training each week for a total of eight weeks of training. The training was based on promising practices that included advocacy issues, independent living issues, plus consumer rights and responsibilities. Other activities and materials that are available to schools were used to promote self-determination. The results of the project provided evidence as to CILs’ capabilities to make vital contributions to youth transition success and provide valuable community connections. Additionally Wehmeyer and Gragoudas present a few examples of collaboration and suggest these promising practices may be narrowing the divide between CILs and LEAs.

Considering the high potential of CILs as community–connectors and community inclusion specialists, the purpose of this study was to obtain a current picture of how CILs are working with LEAs in supporting secondary transition of youth with disabilities. The following research questions guided this study: (1) To what extent do CIL personnel collaborate with LEAs? (2) How frequently do CIL professionals implement services with transition-age youth? and (3) What are CIL professionals’ perceptions of facilitators to successful collaboration with LEAs?

2 Method

2.1 Sampling frame

The following measures were applied to draw a sample of participants for this study: First, an initial master CIL directory was created by analyzing the national CIL summary of performance report available through the Rehabilitation Services Administration (RSA) and U.S. Department of Education (https://rsa.ed.gov/quick-tables.cfm). Second, this initial list was cross-referenced with the Independent Living Research Utilization (ILRU) Directory of Centers & Statewide Independent Living Councils (SILC) (2013) http:/www.ilru.org/html/publications/directory/index.html[directory/index.html] making changes as needed (i.e., additions, corrections, and deletions). Finally, an individual search of each state‘s CIL agencies was completed, any new CILs found were added to the main list. Contact information of each CILs was verified using the website http://www.virtualcil.net/cils/. Through this process, a total of 929 CIL professionals were identified.

Email invitations were sent to the 929 CIL representatives with the active link to an electronic survey, consent form, and study description. Snowball sampling technique was also used to increase the likelihood that the CIL professionals who completed the survey were involved in secondary transition. So, invitations included instructions for recipients to either fill out the survey and/or forward it to the appropriate representative from their CIL. Two survey completion reminders were sent. A first follow-up e-mail was sent three weeks after the initial e-mail to thank the CILs representatives that have already submitted their answers, as well as to remind the ones who did not respond. A second and final follow-up e-mail was sent after another three-week period.

2.1.1 Participants

One hundred and ninety-eight CIL representatives responded to the survey which was 21% (198/929) of the professionals who were identified when constructing the sample (n = 929). Respondents represented 38 states, Puerto Rico, and the Virgin Islands. The majority of study participants were female (n = 148; 73%), White (n = 182; 92%), 41–60 years of age (n = 70; 35%), and had earned a bachelor‘s degree (41%). Most of the participants (47%) identified themselves as executive directors and independent living specialists (13.6%). Almost two thirds of all study participants (65.3%) reported that they have been providing transition services to youth between 2–12 years. The majority of surveyed professionals (53%) reportedly serving from 1–20 transition-age youth with disabilities. However, caseload sizes were higher for some with slightly less than one quarter of CIL employees (22%) with 40 or more transition-age students and 12.6 percent of respondent with 21–30 youth with disabilities. There were 24 respondents (12.6%) who did not have any transition-age consumers. Their data were removed from the further description and the analysis. More than two thirds of participants (67.7%) served their transition-age consumers in 1–7 counties.

More than half of all respondents (51.6%) reported that they partnered with five or more high schools. However, 14.6% of CIL professionals reported that they did not partner with any high schools. Further, over half of all participants (53%) reported that they received one day or less of training related to transition, although slightly more than one third of the respondents (34.8%) reported that they receive 2–4 days of training each year (see Table 1 for participant demographics).

2.2 Instrumentation and data analysis

The online survey consisted of three main sections; however, only section 1 and 2 were used for this study. Section 1 addressed the questions about participant background (e.g., age, gender, race, educational background), work experience (e.g., years involved in providing transition services), and current employment characteristics (e.g., case load, counties served, received training). Section 2 consisted of questions related to the respondents‘ involvement in and perceptions toward secondary transition planning and service delivery. In addition, participants rated the importance of facilitators to interagency collaboration and the frequency of transition services provided.

2.2.1 Section 2

Participants responded to four 5-point Likert questions asking about the importance of and their involvement in secondary transition. Specific questions were about their involvement with state-wide transition initiatives (1 = Never to 5 = Very often); their perception of CIL coordination with LEAs (1 = Coordination does not exist to 5 = Outstanding); the priority level of secondary transition within their CIL (1 = Not at all a priority to 5 = Major priority); and their perception on how important the coordination between LEAs and CILs is (1 = Not at all important to 5 = Major priority).

Participants rated the extent to which they provided eight transition services using a 5-point Likert scale (1 = Never to 5 = Always). Then, participants rated seven facilitators of successful interagency collaboration using a 4-point Likert scale (1 = Extremely unimportant to 4 = Extremely important). Based on the literature reviewed in preparation for the study, eight services and seven facilitators of collaboration were included in the survey. Further, two CIL professionals with at least 2 years experience served as content level experts for this study. These sections of survey were developed specifically for this study.

In order to address the issue of potential bias resulting from missing response data (Davey, Savla, & Zupei, 2005; Rubin, 1976), we used a multiple imputation (MI) procedure to impute 100 data sets in our analysis (Enders, 2010; SAS Institute, 2008). To answer the study’s research questions, descriptive statistics (i.e., frequency counts, percentages, and means) were calculated for each question (see Tables 2, 3, & 4).

3 Results

3.1 Overall CIL secondary transition perceptions and participation

The majority of study participants (77.3%) reported secondary transition as a priority with 41.9 % rating transition as a major priority. However, only 19.2% responded that they very often or often participate in local or state-wide transition initiatives. In fact, nearly a quarter (24.2%) reported that they never participate in such initiatives and slightly more than one third reported that they only participate sometimes (36.4%). Further, the majority of the CIL participants (72.7%) considered coordinating their services with high schools as extremely important, and a quarter of all participants (25.8%) saw it as important. However, less than half of all participants (42.9%) identified coordination with LEAs as outstanding or good, and the majority rated coordination as adequate, poor, or non-existent (57.1%) (see Table 2).

3.2 Frequency of CIL transition services

Displayed in Table 3 are the frequencies, percentages, and means for the eight transition services. The majority of transition services were rated similarly with seven of the eight services having means ranging from 3.29 to 3.97. Information and referral service was reported as most implemented (M = 3.97). Job development and placement service was the only item averaging less than 3.0, with an mean of 2.69.

3.3 Perceptions of successful collaboration facilitators

Each of the seven facilitators were perceived to be critical for successful secondary transition collaboration among CILs and LEAs. In fact, each of the listed facilitators had an mean range from 3.05 to 3.61 (4 = Extremely important) indicating that all facilitators were thought to be important for successful collaboration. Highlighting the strength of their perceived importance, 99% of participants selected extremely important or important for “having specific contact for partnering agency” and “professional knowledge of the eligibility of criteria for state agencies” (see Table 4).

4 Discussion

The findings of this exploratory study support previous research on CILs’ growing involvement in assisting transition-age students with disabilities and their families as they move from the secondary educational system to postsecondary life (e.g., Mazzoni, 2014; Oertle et al., 2013). The impact of CILs’ involvement in transition and interagency collaboration is only beginning to be determined and the information from this study add to the knowledge base regarding the place of CILs in transition services. Our findings support previous research, suggesting that CILs have made transition involvement a priority (Mazzoni, 2014). Grounded within their symbiotic relationship with VR, based on their legislated responsibilities, CILs are distinctively positioned to contribute to the delivery of pre-employment transition services that are now required of VR counselors (WIOA, 2014). In particular, CILs draw from their deeply rooted community connections to offer support under a consumer-controlled model (Wilson, 1998). Built upon this community-base, CILs’ services are explicitly targeted to support the inclusivity of people with disabilities through access to resources, information, referral, advocacy, and independent living (Oertle et al., 2013; Wilson, 1998: Wehmeyer & Gragoudas, 2004; WIOA, 2014).

Based on our findings, CILs typically provide their core services – (1) information and referral, (2) peer mentoring, (3) systems and self-advocacy, and (4) independent living skills training; but, CILs also assist with goal building – on a regular basis. The only area of CILs’ responsibilities, reported by the majority of study participants (60.6%) as implemented only rarely or sometimes, was job placement. CILs are required to focus on secondary transition planning and target skills building, necessary for successful transition, rather than actual job placement. Job placement may conflict with the philosophy of CILs in that CILs aim to empower youth and facilitate skills so that individuals can find their own employment. It is troublesome, however, that despite participants valuing the collaboration among CILs and LEAs that cross system coordination remains minimal.

4.1 Actions for CILs

4.1.1 Training

With strong community ties which operate under a proactive approach, CILs’ involvement in preparing youth with disabilities for successful secondary to post-secondary transition is vital to connect students with other adult agencies (e.g., VR). Therefore, CILs should strengthen their role as a transition planning and self-advocacy and independent life skill-development agency by improving their personnel preparation to meet the needs of transition-age youth. This includes, but is not limited to increasing staff training on the transition issues where CIL services to youth can improve. Further research is necessary to determine the specific areas of need for CILs personnel training.

4.1.2 Establishing clear responsibilities

In this study, participants rated facilitators necessary for successful interagency collaboration. The vast majority of respondents (93.9%) reported high importance of having overarching entity supporting transition (e.g., Local Transition Planning Council), the need for signed memorandum of understanding with outside agencies (92.3%), as well as having a specific contact for partnering agencies (99 %). These findings suggest the need for clear and well-defined roles of interagency collaboration partners in addressing the demands of transition-age youth with disabilities. As noted earlier, CILs play an important role in community-based independent life skill-building, self-advocacy and transition planning, which could allow other participating agencies to focus more extensively on other vital areas of secondary transition, such as job-placement activities. However, these roles and expectations must be discussed and established among those involved in the secondary transition preparation and planning for successful outcomes to be achieved (Noyes & Sax, 2004; Oertle & Seader, 2015; Oertle & Trach, 2007; Oertle et al., 2013; Sax & Noyes, 2008).

4.1.3 Increasing student inclusion

Although the contributions of CILs to transition services could encompass the wide-ranging secondary transition predictor categories (i.e., from career awareness to work study and program of study, see Mazzotti et al., 2015), CILs’ community presence and legislative charge make them well-positioned to work with secondary educators, specifically to enhance student involvement and increase expectations. However, study findings suggest that only 28% of the study participants reported good coordination with LEAs, while 6% indicated coordination as nonexistent. Simultaneously, the majority of respondents (95%) suggested that adult agency presence in schools is important or extremely important. CIL services in schools can also promote inclusion and disability awareness. As the majority of CIL personnel are individuals with disabilities who themselves have successfully transitioned to adult life, this collaboration can raise educator expectations. Therefore, it is important for educators to become familiar with the unique “peer-based philosophy” provisions and stance of CILs, in order to maximize both their partnership and potential impact on transition outcomes.

4.1.4 Assisting with goal setting

When identifying transition service resources related to goal setting, including CIL assistance may not initially occur (Mellard & Lancaster, 2003). Overlooking CILs may happen especially if the primary transition goals are specific to employment. This is because CILs’ employment related services have been offered inconsistently from CIL to CIL, and are only periodically offered within individual CILs, due to funding priorities (Stoddard & Premo, 2004). Backed by CILs’ legislative and philosophical missions, providing assistance with self-advocacy is a core CIL service component (Rehabilitation Act). Juxtaposed, goal setting is an evidence-based secondary transition predictor (Mazzotti, et al., 2015) that has been identified as part of the ten essential program characteristics for self-determination and self-advocacy (Rowe et al., 2014). Specifically, increases in goal setting skills have been shown to be associated with increases in students’ (a) self-advocacy (Wehmeyer et al., 2013), (b) responsibility and ownership (Balcazar et al., 2012), (c) motivation to attend secondary education, and (d) career-search self-efficacy (Solberg, Howard, Gresham, & Carter, 2012). Therefore, CIL personnel’s contributions to goal setting instruction could be particularly impactful because, despite having models to guide instruction (Wehmeyer et al., 2003), students continue to be underprepared to advocate for themselves or set goals as they leave secondary education for their postsecondary lives (Martin & Williams-Diehm, 2013).

4.1.5 Building self-advocacy, social, and independent living skills

Oertle et al. (2013) observed that CILs look to transitioning students and their families for leadership during the transition process, rather than to secondary educators. Furthermore, CILs are likely to be invited to participate in transition services by transitioning students and their families, rather than by secondary educators (Oertle et al., 2013). This indicates a potential area of collaboration between the families of youth with disabilities and community-based CILs that could be capitalized upon to strengthen student and parent transition involvement especially when building social, independent living, self-advocacy skills all mandated under WIOA (2014) as pre-employment transition services. As major parts of CILs’ missions, advocacy training and services to transition-age youth, increasing awareness for the families, and providing assistance in the decision-making process (e.g., assistance in IEP/Section 504 meetings) are all potential focus areas for CILs’ contributions to improve outcomes through the delivery of quality secondary transition services. Further research is necessary to better understand the expectations of youth with disabilities and their families as well as CILs, and uncover the components for potential focus areas of CILs such as family collaboration.

4.2 Implications for practice

It is critical for CILs to incorporate young adults with disabilities in their Centers, train them to be strong peer mentors, and teach them how to promote the independent living philosophy. These young adults should have the opportunity to serve as mentors and participate in outreach and youth trainings with other CIL personnel. However, because CILs’ fifth mandated core service came with no additional federal funding, it is imperative CILs diversify funding to support the core services of secondary transition. To begin to diversify funding, CILs must be in the position for building partnerships with organizations serving youth, such as LEAs. Therefore, CILs need to develop stronger and more consistent relationships with LEAs to become a constant presence as a partner at local transition events, meetings, activities, and in their local schools.

It is also important that CILs partner with Parent Training and Information (PTI) Centers and other parent organizations to build relationships to offer self-advocacy, social, and independent living services to youth and their families. Parent to parent organizations typically appreciate the peer-based philosophy of CILs as they practice the same model but for parents who have children with disabilities. In working with the parent organizations, CILs can teach strategies to families that promote positive student involvement by providing education about the independent living and disability rights movements. In addition, although the pre-employment transition services of WIOA (2014) are a new mandate for VRs, self-advocacy, social, and independent living services are not new to CILs. Therefore, collaboration among CIL professionals and VR counselors could be beneficial in providing pre-employment transition services to secondary students with disabilities who are receiving services under 504 of the Rehabilitation act and/or IDEA (2004) in preparation for their transition to their postsecondary lives.

4.2.1 Example from the field

Able South Carolina (SC) is an example of a CIL that has recognized the importance of transition services and coordination with LEAs and expanded its services accordingly. In 2014, more than half of the Able SC consumers served were transition-age, i.e., over 650 youth. The majority of these consumers received their services in the community through partnerships with local school districts. The students set goals related to self-advocacy, and then worked throughout the course of the school year on skills such as individualized goal-setting, effective communications, student-led IEPs, and employment soft skills. These activities were led by CIL personnel who are young adults with disabilities who engaged the students as peers through interactive lessons. Able SC connected with LEAs through (a) involvement on the Transition Alliance of SC, (b) presenting at statewide educator conferences, and (c) participating in local efforts to support to transition-age students. Being a consistent stakeholder at the table has ensured that LEAs know the purpose of CILs and recognize the important of peer to peer services. When funding has not been available to meet the requests for schools to partner, Able SC offers once a semester (instead of monthly or twice monthly) visits to schools to conduct self-advocacy activities with students. Lastly, due to Able SC’s established relationship with students, Able SC continues to assist them with their postsecondary goals once they graduate/complete high school.

5 Conclusion

The results of the current study indicate that the majority of CILs are aware of the impact they can make as indicated by having transition as a priority. Furthermore, the majority of CILs reported being routinely engaged with the transition-age population in goal building activities. To maximize efforts to improve transition outcomes, it is imperative that special educators and VR counselors reach out to CIL personnel to incorporate their services. Like special educators under IDEA (2004) and VR counselors under WIOA (2014), CILs are legislatively mandated to serve the transition-age population (WIOA, 2014). Yet CILs are a largely under-tapped source of transition services. CILs involvement in secondary transition is especially critical because CILs are anchored in the independent living and disability rights movements so that all of their actions support community inclusion. Although there is a need for further research, the alignment of the peer-based CIL community inclusion services, VR counselors’ pre-employment transition services (WIOA, 2014) and special educators’ transition preparation and planning (IDEA, 2004) appears promising for improving secondary transition for youth with disabilities and their families.

Conflict of interest

The authors have no conflict of interest to report.

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