This is Me : Impact of an electronic secondary transition tool on novel adults’ knowledge of students with developmental disabilities’ support strategies and interests

Abstract

BACKGROUND:

Critical information for supporting students with developmental disabilities is often lost in the process of transitioning from school to work and other domains of post-school life.

OBJECTIVE:

This study examines the impact of This is Me (TiME), an electronic secondary transition tool, on novel adults’ abilities to learn about students’ supports/interests. TiME stories are customized tools, created in collaboration with students using their personal iDevices, that allow students to teach new adults in their lives about themselves by sharing picture and video clip examples of support strategies necessary for communication, executive function, and other vital information.

METHODS:

Participants were transition-aged students with communication disorders and developmental disabilities (e.g., autism and/or intellectual disabilities) each paired with a novel adult. We used a randomized control design to compare novel adults’ knowledge of students before and after viewing students’ TiME stories.

RESULTS:

Following sharing of students’ TiME stories, new adults were able to describe significantly more about students’ strategies and other personal information than following unaided conversations.

CONCLUSION:

TiME stories offer a promising tool for supporting transition-aged students to teach new employers, employment service providers, and other adult service staff about their strengths and needs at work and in other post-school contexts.

Keywords

Secondary transition digital transition portfolio iPhone self-advocacy communication disorder autism spectrum disorder intellectual disability

1 Introduction

Secondary transition is a time of both opportunity and risk for young adults with developmental disabilities as they navigate the shift from familiar school settings to novel vocational and other post-school contexts. Ideally, young adults build on their K-12 and/or post-high school educational experiences by taking advantage of the skills they have learned and continuing to develop new ones. This does not always happen seamlessly, however, as critical information about what young adults with developmental disabilities are capable of and how best to support them is often lost in the transition process (Black, 2010; Müller, Pouliot et al., 2018). This loss of knowledge about the unique strengths and needs of each young adult has negative ramifications for the young adults themselves, but also for the novel adults they encounter in post-school contexts including employers, employment service providers, vocational rehabilitation counselors, and residential staff (Kaye et al., 2011).

Without information on how each young adult learns and communicates, novel adults are forced to reinvent the wheel – often with very little background information and training on how to support individuals with developmental disabilities including intellectual disabilities (ID) and/or autism spectrum disorders (ASD; Müller, Pouliot et al., 2018). Without proper orientation to each young adult and the support strategies most effective for working with them, employers and co-workers report feeling unsure how best to scaffold their employees with disabilities’ success (Kaye et al., 2011; Müller, VanGilder et al., 2018). This leads to increased risk of job failure and a significantly higher unemployment rate for young adults with developmental disabilities than for typically developing young adults (Hendricks, 2010; Newman et al., 2011). When provided with appropriate supports, however, studies show that individuals with developmental disabilities including ID/ASD can achieve success in competitive work environments (Müller & VanGilder, 2014; Ryan et al., 2019; Wehman et al., 2017).

In the context of supported work, the employment service provider or job coach is frequently responsible for communicating information about young adults with developmental disabilities to their employers and co-workers (e.g., explaining strategies for working most effectively with a particular young adult, and facilitating opportunities for socialization) (Cox & Land, 2019). But relying on the employment service provider to “mediate” between the young adult employee and their colleagues, while often effective, deprives young adults of significant opportunities to advocate on their own behalves, connect directly with colleagues, and share personal information without their employment service providers getting in the way (Cox & Land, 2019; Müller et al., 2018a; Pouliot et al., 2017).

This article measures the impact of This is Me (TiME) stories, an electronic transition tool designed to do the following:

Provide a digital transition portfolio for young adults with significant developmental disabilities to highlight important information about themselves for novel adults in the workplace or other post-school contexts.

Support self-determined behavior – especially self-advocacy – by placing young adults squarely in the drivers’ seat when it comes to creating their customized TiME stories and using their TiME stories to teach others about their unique strengths, interests, and support needs.

Take advantage of readily available, non-stigmatizing assistive technologies (AT) – in this case young adults’ iDevices.

The following sections summarize the state of research and practice in each of these three areas. We describe TiME stories in greater detail in the Procedures section of this paper.

1.1 Transition portfolios

A small body of literature suggests the use of transition portfolios can be a powerful means of supporting transition from school to work and other post-secondary contexts (e.g., Black, 2010; Clancy & Gardner, 2017; Müller, Pouliot et al., 2018; Pouliot et al., 2017). The transition portfolio neatly addresses the needs identified above for a) avoiding loss of critical information during the transition process; and b) enabling young adults to share personal information about themselves with employers and other novel adults in their lives with minimal support from employment service providers or other adult service providers. While the structure and content of transition portfolios may differ, most transition portfolios share a common goal of gathering together key information on the unique strengths and needs of the transition-aged student in order to ensure that critical information acquired during the student’s school career by teachers, related service providers, employment service providers, and students themselves is not lost during the transition process (Müller, Pouliot et al., 2018; Pouliot et al., 2017). Although transition portfolios are customized for each student, common features include information on young adults’ support needs (e.g., how best to communicate with them and/or support their learning goals); examples of young adults’ work experience and vocational skills (e.g., specific information on past employment; information on their ability to file, deliver, or enter data); and details about students’ interests and other personal information that help paint a comprehensive picture of who the young adult is (e.g., hobbies and/or health needs, as well as whether they prefer working alone/with others, indoors/outdoors, etc.). Digital portfolios take this process one step further by using new technologies to include interactive photos and video clips of how students work and communicate and in some cases “housing” the portfolio on students’ iDevices or other augmentative and alternative communication (AAC) devices (Black, 2010; Clancy & Gardner, 2017; Müller, Pouliot et al., 2018; Pouliot et al., 2017).

In spite of the promise of transition portfolios, however, there is limited evidence that transition portfolios – digital or otherwise – have a measurable impact on what employers, employment service providers, and other novel adults in students’ post-school lives learn/understand about how to a) provide necessary supports; and b) communicate both effectively and meaningfully with young adults with developmental disabilities. Demchack and Greenfield (2000) were the first to document use of transition portfolios, presenting a case study of a 14-year old student with multiple disabilities and his use of a transition portfolio. The article explained that the purpose of the portfolio was to ease transition from middle school to high school, and included information on the student’s medical needs, educational and programming strategies, communication needs and solutions, and behavioral supports. There was no formal attempt to quantify outcomes. Clancy & Gardner (2017) documented the use of digital transition portfolios within an entire special education high school using ePortfolio for assessment purposes, but also as a means of ensuring that information about students traveled with them after they left school. Again, there was no attempt to measure impact of the portfolios on students or their support staff. Finally, a study by Müller, Pouliot et al. (2018) attempted to quantify the impact of digital transition portfolios (specifically TiME stories), and found that employers reported significant increases in their knowledge of young adults’ communication strategies, and confidence supporting their workplace communication.

1.2 Self-determination

Self-determination has been shown to be a key factor in determining post-school success for students with disabilities, including communication disorders and ID/ASD (Cobb et al., 2009; Zhang et al., 2010). For example, evidence suggests that self-determined behavior contributes to improved rates of employment, enrollment in post-secondary education, independent living, and community engagement (Callahan et al., 2011; Cobb et al., 2009; Lindstrom et al., 2011; Test et al., 2009). However, while a few older meta-analyses (Algozzine et al., 2001; Test et al., 2004) indicate that students with communication disorders and/or ID/ASD can be taught a wide range of self-determination skills, evidence also suggests that youth with more significant disabilities have limited opportunities to practice self-determination skills, such as communicating their strengths and needs to the important adults in their lives and advocating for necessary supports (Carter et al., 2009; Wehmeyer & Garner, 2003).

Significantly, Nota et al. (2007) found that intelligence quotient (IQ) and social abilities were less relevant factors in predicting self-determination of individuals with disabilities than frequency of opportunities to act in a self-determined manner. Wehmeyer et al. (2011) make an important point about the role of context in supporting self-determination for transition-aged adults with ID: “While cognitive capacity may identify the level of support a person will need to become fully self-determined, the degree to which that is achieved is as much a function of the environment, or the context, and the supports available to people to succeed in those environments as it is a function of intellectual or cognitive capacity” (Wehmeyer et al., 2011, p. 17, emphasis added). Carter et al. (2009) recommend that efforts to promote self-determination for youth communication disorders and ID/ASD be accompanied by “frequent, intentional and well-designed opportunities for students to acquire, demonstrate, practice, and develop needed skills and behaviors” (p. 180).

1.3 Assistive technologies

Research indicates that assistive technologies (AT) can have a beneficial effect on students with disabilities’ academic and job performances (Burne et al., 2011; Sauer et al., 2010), and a number of studies indicate that AT can be especially beneficial in decreasing dependency on adults and facilitating greater autonomy on the part of students with communication disorders and ID/ASD. Traditional AT devices are often abandoned, however, because they lack consideration of users’ needs, draw unnecessary attention, and/or lack portability (Alper & Raharinirina, 2006). A study by Shinohara and Wobbrock (2011) found that users valued AT devices that allowed them to look like their typically developing peers. In response to this Shinohara and Wobbrock recommended the use of mainstream technologies such as iDevices to eliminate the possibility of social stigma associated with AT.

A systematic review of 15 studies that used iPods and iPads to teach a total of 47 participants with developmental disabilities found that the tools were effective in supporting students within five domains: academic, communication, employment, leisure, and transitioning across school settings (Kagohara et al., 2012). Several of the studies also focused on the use of iPads and iPods to generate speech. A meta-analysis of 15 studies (Alzrayer et al., 2014), and a systematic review of 17 studies (Lorah et al., 2014) – both examining communication interventions for students with ID and/or ASD – similarly found that iDevices appeared to be highly effective in increasing communication skills for these populations. The review by Lorah et al. (2014) further noted that students preferred using iDevices to lower-tech options, and Alzrayer et al. (2014) reported that social validity measures across studies indicated that satisfaction with iDevices for communication was high.

While these findings are promising, what is missing from this brief review of the literature are studies of if/how iDevices can be effective in supporting self-advocacy. Black (2010) and Müller and Pouliot et al. (2018) argue that the making and sharing of digital transition portfolios offer a key means of promoting self-advocacy in young adults with developmental disabilities. Both suggest that this process augments young adults’ ownership of their personal information and decreases their dependence on teachers, employment service providers, and parents.

1.4 Purpose of study

In spite of literature recommending the use of digital transition portfolios as a best practice for supporting transition to post-school life for students with more significant disabilities, there is a clear lack of research measuring the impact of these self-advocacy tools on young adults – especially those with complex communication needs – and the novel adults who support them. As mentioned earlier, a recently published article indicated that employers found TiME stories (formerly called “Communication Stories”) to be beneficial in terms of learning more about their employees with communication disorders and ID/ASD (Müller, Pouliot et al., 2018). These findings, however, were based exclusively on qualitative interviews with employers. In order to more rigorously test the impact of TiME stories, we designed the present study to answer the following research question: To what degree does viewing students’ TiME stories help students self-advocate more effectively for the supports they need as measured by whether novel adults are able to identify a) more actionable strategies for supporting students; and b) more personal information about students than by talking with students prior to having access to their stories? We hypothesized that there would be a significant increase in both our dependent variables (i.e., frequency with which partners listed actionable strategies and frequency with which they listed personal information) in response to introduction of students’ TiME stories.

2 Method

2.1 Participants

TiME stories were originally developed for stu-dents with moderate to severe developmental disabilities who attended a high school and post-high school program at a non-public school in Maryland where they focused primarily on adaptive skills and vocational preparedness. All students were certificate-track as opposed to diploma-track, and all faced significant challenges related to communication and self-determination/self-advocacy.

Students’ speech-language pathologists (SLPs) identified challenges related to communication that ran the gamut: Some students experienced intelligibility issues. Many were limited to a few word utterances. Others were able to speak clearly using longer sentences, but engaged in frequent off-topic monologues, and failed to limit their responses to salient details. None were able to independently describe their vocational strengths and needs. While none used AAC for all their communication needs, all used AT – usually their iDevices and/or phones – to support communication, including using pictures from their camera roll to share details about their experiences, clarifying verbally shared information by locating a picture, using developed stories in apps to share details about their experiences, and using checklists on their iDevices/phones to complete tasks. SLPs realized that without some sort of tool to “scaffold” their interactions, these transition-aged students would not be able to advocate for needed supports when encountering employers, employment service providers, and other important new adults in their post-school lives. In addition to supporting communication, TiME stories were designed to support cognitive processes including memory, initiation and organization of ideas (e.g., through use of visuals, videos, and recordings), as well as sharing of joint attention with novel communication partners (i.e., by providing a shared focus).

Criteria for participation in this study included: a) be a transition-aged high school or post-high school student (i.e., aged 14–22); b) receive weekly speech and language therapy as part of their individualized education program (IEP); c) be identified by their SLP and educational team as someone who would benefit from a TiME story due to communication disorders (i.e., expressive, receptive and/or pragmatic language challenges) that negatively impacted self-advocacy; d) know how to use the basic functions of an iDevice (e.g., navigating the menu of apps, opening apps by clicking on icons); and e) be diagnosed with ID, ASD, multiple disabilities, and/or other health impairments based on a review of their educational records. Students who failed to meet any of the five criteria were excluded from participation in the study. Although no formal assessments of self-advocacy skills were conducted prior to the beginning of the study, SLPs and other members of students’ educational teams identified which students in the program demonstrated significant difficulties with self-advocacy (i.e., expressing their interests and needs, and requesting necessary supports, as described by Pierson et al., 2008) due to various combinations of cognitive and speech/language challenges.

Eighteen students were initially selected to participate in the study, but one dropped out during the course of the year, resulting in a final participant pool of 17 students. Ten participants were diagnosed with ASD, six were diagnosed with ID, five were diagnosed with OHI, and five with MD. (See Table 1 – Participant Characteristics. Note: Totals do not sum to 17 because several participants’ educational records indicated more than one diagnosis.) Eleven students were male, and six were female. Ages ranged from 15 to 22 years. Nine participating students identified as Caucasian, six as African American, and two as Hispanic.

Table 1
Participating student characteristics

ID# Group Age Gender Ethnicity Disability

1 A 17 F African American OHI

2 A 20 M Caucasian MD, ID, OHI

3 A 18 F Caucasian ID

4 A 21 F Caucasian MD, ASD, ID

5 A 18 M African American ASD

6 A 18 F Caucasian OHI

7 A 19 F African American ID

8 B 21 M African American ASD

9 B 16 M Caucasian ASD

10 B 20 M African American MD, ASD

11 B 16 M Hispanic ASD

12 B 18 M African Amemrican ASD

13 B 16 M Caucasian MD, ASD, OHI

14 B 21 M Caucasian ASD, ID

15 B 21 F Caucasian ID

16 B 18 M Hispanic ASD

17 B 15 M Caucasian MD, OHI

ID#	Group	Age	Gender	Ethnicity	Disability
1	A	17	F	African American	OHI
2	A	20	M	Caucasian	MD, ID, OHI
3	A	18	F	Caucasian	ID
4	A	21	F	Caucasian	MD, ASD, ID
5	A	18	M	African American	ASD
6	A	18	F	Caucasian	OHI
7	A	19	F	African American	ID
8	B	21	M	African American	ASD
9	B	16	M	Caucasian	ASD
10	B	20	M	African American	MD, ASD
11	B	16	M	Hispanic	ASD
12	B	18	M	African Amemrican	ASD
13	B	16	M	Caucasian	MD, ASD, OHI
14	B	21	M	Caucasian	ASD, ID
15	B	21	F	Caucasian	ID
16	B	18	M	Hispanic	ASD
17	B	15	M	Caucasian	MD, OHI

Key: F = Female, M = Male, OHI = Other Health Impairment, MD = Multiple Disabilities, ID = Intellectual Disability, ASD =Autism Spectrum Disorder.

For the purposes of this study, each participating student was paired with one novel adult communication partner who did not know the student prior to the study. Novel adults included school administrators, SLPs (not participating students’ SLPs), and other school staff. Several staff were paired with more than one participating student. Although no novel adults were familiar with participating students at the beginning of the study, and did not interact with the student during the year except as part of the study, novel adults entered the study with varying degrees of experience supporting and/or interacting with students with disabilities. Further, novel adults’ educational backgrounds ranged from bachelor’s degrees in unrelated fields, to graduate degrees in special education and/or speech language pathology. Because all novel adults followed a strict script as part of the study, however, we were confident that their differing levels of experience would not significantly impact interactions with participating students. All novel adults were female and identified as Caucasian.

2.2 Research design

The study used a randomized control design with switching in which 17 participants were divided into two groups. The dependent variables measured throughout the study were total number of actionable strategies and other pieces of personal information novel communication partners identified as having learned during their interactions with participating students. We gathered baseline data from Group A (n = 7) and Group B (n = 10) at Time 1, post-intervention data from Group A and a second baseline from Group B at Time 2, and maintenance data from Group A and post-intervention data from Group B at Time 3. We chose this approach because we felt it was unethical to withhold a TiME story from any students whom we identified as likely to benefit, while still allowing us to use Group B as a control between Times 1 and 2. We also sought to establish social validity via end-of-study interviews with participating students and their novel communication partners.

2.3 This is Me intervention

TiME stories are electronic, iDevice-based tools intended to help students self-advocate for the supports they need. The stories are made up of captioned pictures and video clips that students create and/or select in order to show the significant adults in their lives (e.g., teachers, adult service providers, and employers) their strategies for communication, behavior management, and executive function. Students can also use their TiME stories to share vital personal information such as strengths, interests, hobbies and health concerns. The stories a) organize and scaffold complex information that students’ ID and/or executive function challenges would otherwise prevent them from doing independently; b) clearly articulate content for students for whom intelligibility is an issue (i.e., voice overs can be provided by staff for those with articulation disorders); and c) support students who are unable to answer questions about themselves unaided with more than a few words, but who can read from a simple script they develop in conjunction with support staff. (See Appendix A for a sample TiME story. See also Pouliot et al. (2017) for a detailed description of TiME stories, and This is Me: A Self-Advocacy Tool (https://coggno.com/onlinetraining/academic/education+training/a-how-to-guide-for-creating-this-is-me-stories), a step-by-step manual for creating TiME stories.)

Each participating student developed and shared their TiME story based on the following procedure: First, each participant’s SLP and other members of the participant’s educational team met to develop a strategy list for their TiME story. A typical team for a participant in the study included the participant, their program supervisor, classroom teacher, employment coordinator or coach, SLP, transition specialist, and other related service providers (e.g., mental health provider, occupational therapist, and/or physical therapist). In collaboration with the participant, stories were written in the first person from the participant’s perspective (e.g., “Sometimes it is hard for me to understand words. Here are ways to help me”), used language corresponding with the participant’s comprehension level, and included a combination of captioned photos and brief video clips. Included strategies were selected using current evidence-based practice for individuals with ID/ASD, as well as communication disorders (e.g., Grow & LeBlanc, 2013; Sam et al., 2018). Participants’ TiME stories included each of the following sections for supporting their a) receptive (“How to Talk to Me”); b) expressive (“How I Talk to You”); and c) social/pragmatic language (“How I Interact”); as well as d) executive function (“Tools to Help Me Remember”); and e) an “About Me” section for any additional, relevant information such as medical, behavioral, or personal qualities/characteristics like hobbies and interests.

The number and type of strategies included in each of these sections were based on strengths and needs of each participant, and customized to meet their unique learning and communication profiles. The guiding principle behind creation of each TiME story was sharing strategies that would help support transition-aged students across the most settings and communication partners, and to help them be successful in novel environments (e.g., new workplaces), as well as with novel adult communication partners (e.g., employers and co-workers).

Participants’ SLPs then worked with them to create their stories on an iDevice using the story creation applications My Pictures Talk (by Grembe Inc.) or Pictello (by AssistiveWare). With adult support, many participants typed one strategy per page. Together, the participant and SLP decided whether each page would include a photo or video to accompany each strategy script, as well as audio recordings of the written caption for each page. Participants selected relevant photos. For each video clip, the participant rehearsed using the selected strategy and the SLP video-recorded the participant using the strategy in a structured setting, or video-recorded the participant using the strategy in a natural setting (e.g., job site, cooking class, academic class). Most stories included between 15–20 strategies, and took approximately 8–12 minutes to share. Throughout the process, participants’ SLPs checked in with them to see if there was anything they wanted to add, adjust the language of the story if the participant didn’t understand words, or take out strategies if participants did not want them included. If the story felt too long while the participant was sharing it (e.g., if the student stopped attending to the sharing experience, or if the novel adult communication partner did not seem interested), the student and their team would meet and decide which strategies weren’t as critical for a novel communication partner to know.

Participating students’ SLPs taught them within a structured therapeutic setting to locate and share their stories when prompted to “Tell me about yourself,” including relevant pragmatics (e.g., adjusting volume, orienting iDevices so that communication partners could see the screen, and paging through stories at an appropriate pace). Training sessions lasted approximately 15–20 minutes per session, and total training time ranged from four to six hours for each participating student, varying slightly based on whether the student had an IEP goal related to developing and sharing their story. SLPs used explicit instruction, a most-to-least prompting hierarchy, and task analysis (i.e., each step in the sharing procedure), until participants became fluent in sharing their stories with familiar partners (MacDuff et al., 2001). Fluency was operationalized as being able to independently share their stories with their SLP in response to the single prompt to “Tell me about yourself.” Whenever possible, participants were provided additional opportunities to share their stories with a variety of communication partners across a range of contexts prior to sharing with the novel adult assigned to them as part of this study.

2.4 Instrumentation

2.4.1 Pre- and post-intervention survey questions

We created a four-item survey protocol asking communication partners to describe what they learned based on what participating students told them, including information on student’s strengths, strategies that helped them at work and school, strategies for supporting communication, and anything else about the participating student (e.g., medical needs, behavioral support strategies, learning accommodations, or hobbies/interests). The same form was used both pre- and post-intervention. The survey protocol was not piloted prior to use, but communication partners were given verbal and written instruction on how to complete it.

2.4.2 Social validity surveys

Participating students were asked to complete a three-item social validity survey (see Appendix C) with support from their SLPs that included two Likert-type questions about making and sharing their TiME stories. These questions employed happy, neutral and sad faces to support comprehension. Participants were also asked to show their SLPs their favorite part of their story.

Novel communication partners were asked to participate in a social validity telephone interview that included both Likert-type questions and open-ended questions about how much students’ abilities to share information about themselves improved as a result of sharing their stories, how much knowledge and confidence communication partners had before and after viewing students’ stories, whether they liked the fact that stories were electronic and enabled students to share their strategies independently, and whether they recommended use of TiME stories with other adults in students’ lives.

2.5 Data collection

We collected surveys completed by novel adults after interacting with students at Times 1, 2 and 3. The protocol was as follows:

Baseline (Time 1) data were gathered for Groups A and B, prior to the creation of any of the students’ TiME stories. First, researchers met with novel communication partners for ten minutes to explain the protocol for interacting with students, and provided them with a written script to follow. Each of the 17 students then met with their communication partners, and the partners asked students to “Tell me about yourself.” Partners then probed for more information using the follow-up questions: “What are you good at?” “What helps you at school?” and “What helps you at work?” Students responded using their preferred mode of communication (i.e., speech and/or personal speech-output devices). Novel communication partners were then asked to complete pre-intervention surveys describing what they learned about students based on information participants shared (e.g., that they had a job at PetSmart, or liked watching YouTube videos). Partners were directed to only list information based on what students explicitly communicated, and to exclude any information partners gleaned based solely on observation (e.g., the observation that students benefited from having questions repeated or by talking slowly to them).

Students’ SLPs worked with Group A participants and their educational teams to create individualized TiME stories. Group A participants were also taught to navigate their iDevices and share their stories in response to the cue to “Tell me about yourself” (see Intervention section for details). Group B participants received no intervention at this time.

Post-intervention (Time 2) data were gathered for Group A, and a second round of baseline data was gathered for Group B, during Winter of the academic year. For both groups, novel communication partners cued participants to “Tell me about yourself.” If Group A participants failed to open their iDevices and share their stories in response to this cue, communication partners were directed to follow a prompt hierarchy from least to most support (see Appendix B) until participants opened and shared their TiME stories.

Prior to interacting with participants, Group A communication partners received 10–15 minutes of verbal instruction from researchers on how to follow the prompt hierarchy and keep track of prompting using a checklist/visual of the prompt hierarchy. Although researchers did not assess communication partners’ mastery prior to intervention, partners did not have trouble using the prompt hierarchy and checklist, as most were familiar with following this type of protocol. All trainings were 1:1 and took place in SLP’s offices or other available rooms throughout the school building. When meeting with students, communication partners followed this set script. For example, if participants did not immediately open their TiME stories, communication partners first repeated the instruction and waited 10 seconds. If this still did not work, they repeated the instruction, pointed at the iPad, and again waited. Additional prompts included pointing at the home button, and finally at the story application itself.

Group B participants and their communication partners again followed the protocol for the first round of baseline.

Students’ SLPs worked with Group B participants and their educational teams to create individualized TiME stories. Group B participants were also taught to navigate their iDevices and share their stories in response to the cue to “Tell me about yourself.”

Maintenance (Time 3) data were gathered for Group A and post-intervention data were gathered for Group B during Spring of the academic year following the post-intervention protocol described earlier. For both groups, participants’ original novel communication partners cued participants to “Tell me about yourself.” If Groups A or B participants failed to open their iDevices and share their stories in response to this cue, communication partners were directed to follow the prompting hierarchy from least to most support until participants opened and shared their TiME stories. Again, communication partners followed a strict script and kept track of whether and how much prompting was necessary.

Two weeks after the study was complete, post-intervention social validity interviews were conducted with participants and their novel communication partners about overall impressions of the value and usefulness of TiME stories. Participants’ SLPs helped them complete their written surveys, and members of the research team conducted phone interviews with communication partners which were transcribed verbatim at the time of interview.

2.6 Data analysis

In order to measure what novel communication partners learned during conversations before and after participating students shared their TiME stories, authors created a codebook by analyzing a random sample of 20% of the baseline and post-intervention surveys completed by novel communication partners, and identifying the different types of information they learned either from students speaking or from viewing their TiME stories. The first and third authors worked closely together to create a codebook that clearly operationalized each code, and any differences of opinion were resolved by consulting the data and reaching consensus about the best way of capturing the phenomena that enabled us to compare a) interactions with students based only on asking students about themselves and their support strategies; with b) interactions with students using the same prompts after students had created and learned to share their TiME stories. Novel communication partner surveys were coded for the following two types of information:

Actionable strategies: Each time a specific strategy was listed in which communication partners could support participants to be successful at school or work, or a specific way participants could support themselves (e.g., “Use 3–5 word sentences when giving instructions,” “Get participant’s attention before speaking to him”), this was coded as an actionable strategy. Information listed that was not specific enough to be useful (e.g., “computer” or “job coach”) was not coded as an actionable strategy. If one sentence contained multiple support strategies, authors coded each support strategy separately (e.g., “Use participant’s name and gain eye contact before beginning to talk” would be coded as two actionable strategies).

Other personal information: Each time information about participating students’ strengths, needs, tools, likes/interests, and details about their home/school/work life was listed (e.g., “Likes watching YouTube videos,” “Lives at home with her parents”), this was coded as other personal information. If one sentence contained multiple pieces of personal information, we coded each piece of information separately (e.g., “Likes Nintendo, going to restaurants, and hanging out with his dog” would be coded as three pieces of information).

Frequencies were established by counting the total number of times each of these types of information was listed by each participant’s novel communication partner and averaged across partners. The authors then compared baseline and post-intervention means to determine if the frequencies with which novel communication partners listed each type of information changed over time. Differences in means were calculate using two sample (pooled variance) t-tests. Differences were found to be significant at the 0.05 level. Effect sizes were calculated using Cohen’s d.

After initial training on how to use the codebook, and practice using it with a small sample of data, the first and third authors coded responses independently. Inter-rater reliability was calculated for each of the two types of information by dividing the total number of agreements between the two authors by the total number of agreements plus total number of disagreements between them, and multiplying by 100. Inter-rater reliability was 97% for actionable strategies and 97% for other personal information. Neither of the coders was blind to the condition.

Authors also analyzed information on prompting required, and made note of the total number of participants who were able to share their TiME stories at post-intervention based only on the prompt, “Tell me about yourself,” versus how many required additional prompting/support to share their stories.

3 Results

The following section summarizes what novel adult communication partners learned from students’ TiME stories.

3.1 Actionable strategies

Novel communication partners matched with students from Group A listed an average of 0.57 specific, actionable strategies per student at Time 1 (baseline), which increased significantly to an average of 10.14 per participant at Time 2 (post-intervention) for an average difference of 9.57 (t = 8.46, P < 0.001) (see Table 2). The effect size of 4.78 was very large (Cohen, 1988). Novel communication partners paired with students from Group B identified an average of 0.3 at Time 1 (first baseline) and 0.4 at Point 2 (second baseline) for an average difference of 0.1 (t = .32, P = .38). This difference was not statistically significant, and the effect size was only 0.17 which was negligible. However, there was a significant difference for Group B between 0.4 per participant at Time 2 (second baseline) and 7.8 per participant at Time 3 (post-intervention) with an average change of 7.45 per participant (t = 8.55, P < 0.001) (see Table 3). The effect size of 2.81 was large.

Table 2
Comparing Time 1 with Time 2 means: What Group A and Group B communication partners learned about participants

Time 1 count Time 2 count Difference t stat Effect size

Mean SD Mean SD Mean SD

Actionable strategies

Group A 0.57 (0.79) 10.14 (3.24) 9.57 (2.99) 8.46^** 4.78

Group B 0.30 (0.48) 0.40 (0.70) 0.10 (1.00) 0.32 0.17

Other personal information

Group A 2.29 (1.98) 4.86 (2.91) 2.57 (2.64) 2.58^* 0.73

Group B 2.20 (1.55) 2.30 (1.77) 0.10 (2.23) 0.14 0.05

	Time 1 count	Time 2 count	Difference	t stat	Effect size
Actionable strategies
Group A	0.57	(0.79)	10.14	(3.24)	9.57	(2.99)	8.46^**	4.78
Group B	0.30	(0.48)	0.40	(0.70)	0.10	(1.00)	0.32	0.17
Other personal information
Group A	2.29	(1.98)	4.86	(2.91)	2.57	(2.64)	2.58^*	0.73
Group B	2.20	(1.55)	2.30	(1.77)	0.10	(2.23)	0.14	0.05

^*= p < 0.05, ^**= p < 0.001. Effect size of > 0.2 = small, > 0.5 = medium, > 0.8 = large.

Table 3

Comparing Time 2 and Time 3 means: What Group B communication partners learned about participants

Type of Information Learned	Time 2 count		Time 3 count		Difference		t stat	Effect size
	Mean	SD	Mean	SD	Mean	SD
Group B
Actionable strategies	0.40	(0.7)	7.80	(2.70)	7.4	(2.75)	8.55^**	2.81
Other personal information	2.3	(1.76)	4.90	(1.97)	2.6	(1.7)	4.92^**	0.52

^**= p < 0.001. Effect size of > 0.2 = small, > 0.5 = medium, > 0.8 = large.

In comparing the difference between changes in Group A (intervention) and Group B (control) between Times 1 and 2, we found that Group A had an average increase of 9.57 actionable strategies whereas Group B had an average increase of only 0.1 actionable strategies for a significant difference of 9.47 between the two means (t = 9.4, P < .001) (see Table 4). The effect size of 4.64 was very large.

Table 4

Comparing groups A and B in terms of mean differences between Time 1 and Time 2

Type of information learned	Group A count		Group B count		Difference between	t stat	Effect size
					mean differences
	Mean	SD	Mean	SD
Actionable strategies	9.57	(2.99)	0.10	(0.99)	9.47	9.40^**	4.64
Other personal information	2.57	(2.64)	0.10	(2.23)	2.47	2.13	1.03

^**p < 0.001. Effect size of > 0.2 = small, > 0.5 = medium, > 0.8 = large.

3.2 Other personal information

Novel communication partners matched with students from Group A identified an average of 2.29 pieces of other personal information per participant at Time 1 (baseline), which increased significantly to an average of 4.86 per participant at Point 2 (post-intervention) for an average difference of 2.57 (t = 2.58, P = .042) (see Table 2). The effect size of 0.73 was large. Novel communication partners paired with students from Group B identified an average of 2.20 at Time 1 (first baseline) and 2.30 at Time 2 (second baseline), for an average difference of 0.1 (t = 0.14, P = .891). This difference was not statistically significant, and the effect size was only 0.05 which was negligible. However, there was a significant difference for Group B between 2.3 per participant at Time 2 (second baseline) and 4.9 per participant at Time 3 (post-intervention) with change averaging 2.6 per participant (t = 4.92, P < 0.001) (see Table 3). The effect size of 0.52 was medium.

In comparing the difference between changes in Group A (intervention) and Group B (control) between Times 1 and 2, we found that Group A reported learning an average of 2.57 more pieces of personal information, whereas Group B reported learning an average of only 0.1 more pieces of personal information (t = 2.13, P = .054) (see Table 4). This difference was not quite significant at the 0.05 level, although the effect size of 1.03 was large.

3.3 Prompting needed

In order to determine the degree of independence with which transition-aged students were able to share their TiME stories, we gathered the following data: At Time 2 (post-intervention for Group A), four Group A participants were able to share their stories independently in response to the prompt to “Tell me about yourself.” The remaining three required additional support. One participant verbally requested help, one needed to be reminded to take out his iPad, and a third participant required help adjusting the volume on his iPhone and reminders to “slow down” when advancing from one page to the next. At Time 3 (post-intervention for Point B), five Group B participants were able to share their stories independently in response to the prompt to “Tell me about yourself.” The remaining five required additional support. One responded verbally to the prompt and needed to be reminded to also share his TiME story, and the other four required additional prompts (e.g., novel communication partners needed to point to participants’ iPads and/or MyPicturesTalk app icon, or help participants identify which app to select from their desktop).

3.4 Maintenance of skills over time

At Time 3, we measured Group A participants’ maintenance of skills over time, specifically their abilities to share their TiME stories with novel communication partners in response to the prompt to “Tell me about yourself.” We found that six of the seven Group A participants were able to share their stories using only this prompt, although one of these required a reminder to orient the iPhone in the direction of his novel communication partner and click on the “next” buttons to advance through the story. The seventh Group A participant required more extensive prompting to open her iPhone, click on MyPicturesTalk, and select her story. Significantly, independence levels were actually higher than at Time 2 (post-intervention for Group A).

3.5 Social validation

At the end of the intervention, we sought to establish the social validity of findings by soliciting feedback from participating students and their novel communication partners. Students were asked whether they liked making their stories on their iPhones and sharing their stories with others. Based on descriptive statistical analyses, we found that 100% of participating transition-aged students liked making and sharing their TiME stories either “some” or “a lot.” Students identified a wide range of pages as “favorite” parts, but seemed especially fond of the pages where they described their interests and hobbies.

Novel communication partners took part in brief telephone interviews and were asked to reflect on the overall impact and value of TiME stories. Based on a four-point Likert scale, where 4 = A lot, 3 = Some, 2 = Not much, and 1 = Not at all, partners indicated that students’ abilities to share information about themselves improved “a lot” (3.8) as a result of sharing their TiME stories, their own knowledge of students’ strategies improved “a lot” (4.0) as a result of viewing students’ stories, and they liked the fact that students’ TiME stories were electronic and interactive (3.8) and that students’ TiME stories enabled them to share their strategies independently (3.6). When asked if they believed it would be helpful for students to share their TiME stories with the important adults in their lives, 100% said “yes.”

Examples of representative quotes from novel communication partners included the following: “When I first did baseline, he wasn’t able to share any strategies or ways he [the young adult] learned best, or even anything about his interests,” “In the beginning, when we had them share information, information was very limited or wasn’t really relevant to what would be helpful in a workplace environment or school. But when they shared information from TiME, it was helpful, organized, and they shared a lot more information in a way I could retain and put into use,” and “Sharing the story through a video rather than just verbally . . . was very helpful and improved it a lot.”

4 Discussion

Results of this pilot study are promising in a number of ways. Perhaps the most important take away is the dramatic increase in the amount and quality of information that novel adult communication partners reported learning about participants once participants had created and were able to independently or semi-independently share their customized TiME stories. While most novel communication partners reported learning at least a few pieces of personal information from participants prior to viewing their TiME stories – information such as where participants worked or what they liked doing in their free time – virtually none learned anything about participants’ support needs and strategies (i.e., the most that participants were able to communicate was that they were helped at school or in the workplace by their “teachers” or “job coaches”). This finding indicates that TiME stories can support transition-aged adults with significant communication disorders and concomitant developmental disabilities, and scaffold their abilities to self-advocate for specific, actionable supports when interacting with novel adults.

Outcomes mirror the features of self-advocacy identified by Pierson et al. (2008) – specifically knowledge of one’s strengths and needs, and the ability to request necessary support from others. In several instances, students required more than a single prompt to share their TiME stories with novel conversation partners. However, Wood et al. (2005) caution against the “misconception that skills must be demonstrated with complete independence” (p.123), and instead recommend expanding the notion of what is meant by self-determination with individuals with more significant communication disorders and ID/ASD. For example, even those participants (slightly fewer than 50%) who required – and will likely always require – additional prompting and/or supports from adults in their lives in order to self-advocate effectively were still actively involved in the creation of their stories (e.g., videotaping themselves modeling each strategy), and in the sharing process (e.g., selecting and opening the appropriate app, orienting their iDevice so that it could be viewed by their novel communication partners, and pressing the “next” button in order to advance from one page to the next). Interviews with both novel communication partners and participating students indicated that participants were proud of their stories and enjoyed sharing them, even if they lacked the self-awareness and communicative abilities necessary to advocate for themselves without help. TiME stories appear to provide necessary scaffolding for students whose communicative skills would not otherwise allow them to share so much information in a clear and meaningful manner with new adults in their lives.

Interestingly, the amount of other personal information that novel communication partners reported learning about some participants either stayed the same or decreased slightly from baseline to post-intervention. A possible explanation for this is that a few participants were actually working on goals to speak more succinctly. Also, informal analysis of transcripts (not captured by coding) indicated that in spite of similar quantity of personal information shared by some participants, the quality of information shared was higher post-intervention, and comments were frequently more relevant (e.g., instead of saying “I’m handsome,” or “I’m a big boy,” when prompted to “Tell me about yourself,” students were more likely to provide information about themselves that invited further conversation, such as, “I like talking about movies and traveling to other countries”).

4.1 Implications for practice

Job coaches or employment service providers and teachers of students with communication disorders and ID/ASD are typically responsible for explaining actionable strategies to the new adults in their transition-aged students’ lives. The present study suggests that TiME stories can give these students more control over how, when and with whom information is shared. Once trained to share their stories, many may no longer require someone to mediate on their behalf, and be able to interact directly with the new adults in their lives, including employers, co-workers, and adult service providers. As Wood et al. (2005) note, whenever possible, individuals with disabilities “should be recognized as spokespersons on their own behalf” (p. 122). TiME stories certainly honor the spirit of this injunction by giving transition-aged students the opportunity to interact with minimal mediation by an employment service provider or other support staff when it comes to sharing information about themselves with novel adults. TiME stories also provide an excellent example of how everyday technologies can be used in a way that embodies the “nothing about us without us” ethos (Jorgensen et al., 2011). This is because even students with significant cognitive and communication support needs are placed front and center in the making and sharing of their TiME stories.

4.2 Limitations

Results of this study should be interpreted with the following cautions in mind: First, 17 students is a relatively small sample size, and participants were quite heterogeneous in terms of cognitive and language levels. Second, although all participating students were eventually able to share their TiME stories with novel communication partners, some were unable to respond to the cue to “Tell me about yourself” without additional prompting. Authors realized that in a natural setting, as opposed to a research context, novel communication partners would likely be told about students’ TiME stories, and instructed to ask more directly for students to share them (e.g., “Can you show me your This is Me story?”). Because we wanted to use the same cues for both baseline and post-intervention, however, we opted to use the less explicit prompt to “Tell me about yourself.” It is possible that with additional training and more explicit cueing, all participants would have been able to share their TiME stories independently. Another limitation was the fact that novel adult communication partners were a relatively homogeneous group, and that partners were the same individuals across Times 1, 2 and 3. Although participating students did not work with and/or encounter their novel communication partners during other times throughout the year, there is still a possibility that they became a bit less “novel” over time. Furthermore, demands placed on communication partners were intense. They were expected to follow a script, document use of a prompt hierarchy, and complete a survey following their interaction with participants. Although no one reported feeling overwhelmed by these demands, it is possible some partners may have found it difficult to remember all of the strategies participating students shared with them.

4.3 Future directions

In order to build on the findings from this study, we recommend that studies be conducted to determine if TiME stories are more effective with some populations than others – for example students with more significant and/or specific types of communication challenges. Further, given the potential value of TiME stories for improving workplace success, future research might also conduct studies of TiME similar to this study, but with employment-related personnel including employers, employment service providers, and/or vocational rehabilitation counselors.

5 Conclusion

This study contributes to the field of secondary transition and employment by demonstrating that a relatively easy to create tool, that takes advantage of readily available technologies, can be used indepen-dently/semi-independently by transition-aged students with communication disorders and ID/ASD to share information about their strategies and supports with employers, employment service providers, and other novel adults in their lives. Traditionally, research on self-determination/self-advocacy for students with disabilities has focused almost exclusively on involvement in transition planning or IEP meetings (Pierson et al., 2008). This study expands the domain of meaningful self-determination to include recognizing and communicating one’s strengths and advocating for needed services and supports when interacting with new and important adults in students’ post-school lives. As far as we are aware, TiME is the only electronic transition portfolio tool that involves students so intimately in the process of making and sharing information about themselves, regardless of the severity of their communication and/or intellectual challenges.

Footnotes

Acknowledgments

The authors have no acknowledgements.

Conflict of interest

The second and fourth authors were creators of This is Me stories. However, neither stands to benefit financially from their relationship to This is Me stories.

Ethical considerations

On March 28, 2018, Ivymount Schools’ IRB Chair determined that this study was exempt from ethical approval under 45 CFR 46.101:1(b)(1) - Research conducted in established or commonly accepted educational settings, involving normal educational practices, such as a) research on regular and special education instructional strategies, or b) research on the effectiveness of or the comparison among instruction techniques, curricula, or classroom management methods.

Funding

The authors report no funding.

Informed consent

Informed consent was secured from all participants and their families prior to data collection.

The appendix is available in the electronic version of this article: .

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