How Speech–Language Pathologists Adapt This Is Me Digital Transition Portfolios to Support Individuals with Intellectual/Developmental Disabilities and Communication Challenges Across Settings

Abstract

Critical information is frequently lost when individuals with intellectual/developmental disabilities (I/DD) and co-occurring communication challenges transition from one educational/clinical setting to another. To encourage a seamless transition, speech–language pathologists (SLPs) developed This is Me (TiME), a customizable, digital transition tool designed to help students/patients share personal information and advocate for needed support in their new settings. Researchers conducted a content analysis of 92 TiME transcripts to determine how SLPs used the tool across school and inpatient contexts. Findings indicate the most common content domains included in TiME were personal information (e.g., strengths, hobbies, and preferences) and information about communication, learning styles, and behavior/emotion regulation. While school and inpatient units demonstrated similar patterns of domain use, TiME created in an inpatient context contained more information about behavior plans/supports and were almost twice as long on average. They also included more information about safety and diagnoses/medical needs and less information about self-advocacy strategies than TiME created in school contexts, reflecting the very different settings within which they were created. These findings suggest that TiME offers a solution that can readily be adapted to meet the needs of varied groups of individuals with disabilities as well as different audiences.

1. Introduction

Transitions from one educational/clinical setting to another present both opportunities and challenges for individuals with intellectual/developmental disabilities (I/DD) and co-occurring communication issues. Ideally, young people would move seamlessly from one setting to the next, with staff at the former setting passing on information about the individual’s existing skills, strengths, and strategies. However, it does not always work this way, and critical information sometimes gets lost in the process (e.g., Black, 2010; Müller et al., 2022). To prevent this from happening and to ensure smooth, successful transitions, speech–language pathologists (SLPs) developed This is Me (TiME), an innovative technology tool, to help students/patients advocate for needed support in their new settings (Pouliot et al., 2017).

TiME is a customized, electronic transition tool intended to help individuals with I/DD and co-occurring communication challenges advocate for the support they need in areas of communication, learning styles and preferences, behavior/emotional regulation, and other key content domains. Individuals may also use the tool to share personal information about strengths, interests, hobbies, and prior work experiences. TiME tools are created by the individual or with support from their team, uploaded to each individual’s iDevice, and comprise captioned pictures and video clips to share with new communication partners (e.g., teachers, 1:1 aides, adult service providers, or employers) or in novel settings. This paper analyzes TiME tools created for 92 students/patients to better understand how the tool can be adapted to support the transition process across settings.

2. This Is Me: An Overview

TiME organizes and scaffolds complex information that individuals with I/DD and communication challenges might need additional support explaining independently. Content is selected when educational/clinical teams—including students/patients and families, whenever possible—meet to identify key strategies and strengths to be included in the individual’s TiME tool, customized to reflect each individual’s unique learning and communication profile.

Following the team meeting, a planning guide detailing the information and strategies to be included in each section scripted from the perspective of the individual is created by the individual’s SLP or team member, the digital tool is created using the planning guide, and corresponding pictures/video clips are shot, edited, and added to the digital tool. The information or strategy on each page is recorded and plays with each page as the user moves through the tool. There are many options available for recording, including the individual reading all of the scripts themselves, the individual reading some of the scripts themselves, selecting a communication partner to record on their behalf, or using their speech-generating device voice. The tool can be created on a staff device and transferred to the individual’s iDevice once the tool is complete or can be created on the individual’s iDevice from the beginning. TiME can be created using a story creation application such as Pictello. The individual or caregiver is then taught to share the tool with relevant communication partners. To the greatest extent possible, individuals with I/DD are involved in making and sharing their TiME tools. For example, some individuals help select the strategies they wish to showcase, record themselves reading their TiME scripts aloud, type and upload their TiME tools to the apps on their iDevices, and/or learn how to share their TiME tools independently or with support. For those with more complex I/DD and/or behavioral concerns, however, these types of participation are not always possible. In these cases, SLPs rely heavily on their relationship with the individual and input from family members and staff with intimate knowledge of their likes and dislikes, strengths, and preferred support strategies. Although beyond the scope of this article, Pouliot et al. (2017) provide a detailed description of the process for creating TiME, and readers can also reach out to authors for access to step-by-step guidelines.

3. State of the Research

This study provides a content analysis of how TiME is used across multiple settings to understand the range of possible uses. TiME tools are intended to (a) serve as digital transition portfolios supporting transition across educational contexts; (b) use a person-centered, strengths-based approach; and (c) foster self-determination and autonomy to the greatest extent possible. The following sections summarize the state of research and practice in each of these areas.

3.1. Transition Portfolios

Although limited in scope, several studies conducted over the past fifteen years suggest that transition portfolios can effectively transmit information about individuals with disabilities during early childhood and/or post-secondary transition (e.g., Black, 2010; Hartley et al., 2014; Müller et al., 2018, 2022). Transition portfolios serve several purposes, including helping prevent the loss of critical information during the transition process, presenting the individual with disabilities in a positive light (i.e., focusing on strengths rather than deficits), and, in some cases, supporting individuals with disabilities to share personal information about themselves with minimal support from others. Although the structure and content of transition portfolios may vary, most present key information about who the individual is, which helps ‘humanize’ them, including details about their unique strengths, interests, and/or support needs (Müller et al., 2018; Pouliot et al., 2017). They are usually created by support staff (e.g., speech–language pathologists or teachers) from individuals’ current programs to be shared with support staff in their new programs, including schools, workplaces, and residential or day programs (Müller et al., 2022; Hartley et al., 2014; Lewis-Dagnell et al., 2024). When possible, transition portfolios can be constructed with input from individuals with disabilities to encourage autonomy and self-determination (Müller et al., 2022; Pouliot et al., 2017). Traditional paper portfolios include examples of schoolwork, resumes, and bulleted lists of strategies for supporting individuals with disabilities to communicate, socialize, follow multi-step directions, and/or manage frustration. Digital transition portfolios like TiME enhance the sharing process by enabling the addition of photos and video clips of how individuals with disabilities learn, work, and communicate, and in some cases, storing the portfolios on their iDevices so they can readily be shared (Black, 2010; Lewis-Dagnell et al., 2024; Müller et al., 2018, 2022).

Although transition portfolios—both paper-based and digital—offer a promising means of supporting the smooth transition of individuals with I/DD from one setting to another, only a few studies have attempted to measure the impact of these tools. For example, Clancy and Gardner (2017) described using ePortfolios with an entire special education high school to ensure that information about students traveled with them as they transitioned to post-school settings, but no outcome data were gathered. Studies that have attempted to quantify the impact of transition portfolios include two articles on the use of ‘I am’ Digital Stories, 3–5 min videos that place the voices of autistic children and young people in the center of transition planning by capturing video clips and statements about what the person likes doing and is good at, and how they feel most supported (Lewis-Dagnell et al., 2024). For example, Wood-Downie et al. (2021) conducted a series of interviews and focus groups to determine whether stakeholders (i.e., parents, nursery school staff, and educational psychologists) believed Digital Stories could be helpful during transitions from pre-K to elementary school and stakeholders were unanimous in endorsing the tool. A second study of Digital Stories was conducted by Lewis-Dagnell et al. (2024) and included 17 interviews with stakeholders (e.g., parents, school, and professional staff), all of whom agreed that the tool could be an effective means of supporting the transition of autistic students from high school to post-school life.

Two studies of TiME were also conducted. The first, by Müller et al. (2018), was based on interviews with nine employers, all of whom reported significant increases in their knowledge of young adults with disabilities’ communication strategies, as well as improved confidence supporting their workplace communication, following the viewing of young adults’ TiME. The second, by Müller et al. (2022), paired 17 transition-aged students with I/DD and co-occurring communication support needs with a novel adult (i.e., someone who was unfamiliar with the individual with I/DD). Using a randomized control design, the researchers compared novel adults’ knowledge of students before and after viewing their TiME and found that following the sharing of students’ TiME tools, new adults could describe significantly more about students’ support strategies and other personal information than following unaided conversation.

3.2. Person-Centered/Strengths-Based Approach

Over the past few decades, there has been significant movement towards a more person-centered approach to serving people with I/DD that individualizes services rather than insisting on a one-size-fits-all (Kaehne & Beyer, 2014). According to a systematic review of person-centered planning (PCP) by Ratti et al. (2016), PCP places the individual at the center of the planning process; includes family members and friends as key partners in planning; develops goals/objectives that reflect what is most important to the person, their strengths and their support needs; and emphasizes equality and empowerment. Ratti et al. further note that PCP breaks from traditional approaches where planning is done for individuals with I/DD, and instead strives to support individuals with I/DD (with active input from those who know and love them) to engage as fully as possible in driving the planning/decision-making process themselves. This is based on the “nothing about us without us” ethos that emerged in the 1990s as part of the disability rights movement.

Significantly, PCP takes a strengths-based approach that emphasizes building on the person’s skills, abilities, and interests rather than focusing on remediating deficits (Ratti et al., 2016). This strengths-based approach has been embraced and magnified by neurodiversity advocates who stress that the unique strengths, challenges, and differences that characterize each neurodiverse person (including autistic individuals and those with I/DD) are central to who they are and should not be seen as something to be ‘fixed’ (Sarrett, 2016; Kapp et al., 2013).

A limited body of literature has emerged that indicates PCP can result in positive outcomes for individuals with I/DD. For example, a systematic review conducted by Claes et al. (2010) found that the effectiveness of a person-centered approach was most apparent in variables related to reductions in challenging behaviors, improvement in social networks, community involvement, and issues related to the planning process itself (e.g., levels of involvement of the person and their family, improvements in communication, teamwork, and development of a more comprehensive and cohesive vision for the person’s life). Similarly, a more recent systematic review by Ratti et al. (2016) found that PCP appeared to have a moderate impact on several outcomes for individuals with I/DD, particularly community participation, participation in activities, and daily choice-making. Finally, a study of 65 individuals with I/DD by Wigham et al. (2008) found that almost half reported that a key benefit of PCP was improved happiness and self-esteem.

Because the voices of individuals with I/DD—especially those with co-occurring communication support needs—are frequently left out or excluded from education and transition planning, person-centered digital portfolios like TiME and ‘I am’ Digital Stories are designed to place these missing voices front and center (Lewis-Dagnell et al., 2024; Müller et al., 2022).

3.3. Self-Determination

Self-determination refers to a person’s ability to make choices and demonstrate agency within the context of their life and is intimately connected to self-awareness of one’s strengths, preferences, challenges, and needs. All of these aspects are crucial components of one’s ability to advocate for help (Thompson-Hodgetts et al., 2023). Self-determination is also a key factor in determining the post-school success of students with I/DD and co-occurring communication challenges (Mazzotti et al., 2021). For example, research suggests that self-determined behavior and opportunities for autonomy/decision-making during the school years contribute to positive outcomes related to employment, post-secondary education, and independent living (Callahan et al., 2011; Lindstrom et al., 2011; Mazzotti et al., 2014, 2021). While research indicates that students with I/DD can be taught self-determination skills, including asserting preferences (Sheppard & Unsworth, 2011), several studies also suggest that individuals with more significant disabilities (e.g., I/DD including autism) have fewer opportunities to engage in self-determined behavior (Simões et al., 2016). Vicente et al. (2020) argue that teachers and related service providers who work with individuals with I/DD must create opportunities for them to practice self-determination—for example, communicating their strengths and needs and requesting necessary support.

Significantly, a study by Nota et al. (2007) suggests that one’s level of disability/support needs is less likely to predict self-determination than the frequency of opportunities to engage in self-determined behavior. Wehmeyer et al. (2011) argue that the degree to which transition-aged students achieve self-determination is more a function of context—and the supports available within those contexts—than of intellectual or cognitive capacity. In a more recent article by Wehmeyer and Shogren (2017), they elaborate on this concept by explaining that autonomy (a component of self-determination) is frequently and mistakenly equated with independence since making one’s needs and wishes known—including asking for help when needed—is an expression of autonomy. This suggests that tools like TiME can promote autonomy and self-determination for individuals with I/DD and co-occurring communication challenges by creating opportunities for them to learn about their strengths and needs, identify strategies that best support them in their educational and work environments, share vital information about themselves—either independently or with support from another adult, and request help from others.

4. Purpose

To better understand how SLPs use TiME to support their students/patients with I/DD and co-occurring communication challenges as they transition between contexts (e.g., educational, clinical, and other community settings), researchers conducted a content analysis of 92 TiME story transcripts across school and inpatient clinic settings. As part of this study, we asked the following quantitative questions:

(1)

How much information was provided within TiME transcripts (i.e., average # of sentences per story)?

(2)

For which content domains did SLPs provide information using TiME (i.e., personal information, communication, learning styles/preferences, behavior, self-advocacy, diagnostic/medical, motor skills, and safety), and are some domains more heavily supported using TiME than others?

(3)

Which information types did SLPs most frequently use (i.e., informational statements vs. recommended strategies)?

(4)

Do trends in the use of content domains and information types differ across settings?

We also identified examples of how TiME transcripts commonly included information about students/patients (e.g., range of themes within domains, types of statements/strategies used repeatedly across students/patients).

5. Methods

5.1. Data Set

Researchers reviewed TiME transcripts from three different contexts (two non-public schools and one inpatient unit) in urban/suburban Maryland. Retrospective analyses were conducted of 92 deidentified TiME transcripts created over six years. To maintain confidentiality, stories were first de-identified by students/patients’ SLPs and then transcribed verbatim by members of the research team.

A total of nine SLPs had spearheaded the development of TiME. SLPs all held master’s degrees or higher and were licensed in Maryland. They all identified as White and female, ranged in age from 20 to 55 years, and had worked at their current job sites from two to twenty years. School-based TiME tools were also reviewed by students’ educational team members, which, in addition to the student, potentially included their vocational specialist, employment coach, special education teacher, program coordinator, mental health provider, board-certified behavior analyst, 1:1/paraprofessional, occupational therapist, physical therapist, transition specialist, and/or parents.

The 59 students at the two schools for whom TiME tools were created ranged in age from 16 to 23 years. Most students attending these non-public schools demonstrated such complex support needs that their designated public schools could not appropriately serve them. All 59 students had I/DD, with primary educational diagnoses including autism, Down syndrome, Fragile X syndrome, other health impairments, and multiple disabilities. Most were performing several levels below grade level and pursuing high school certificates of completion rather than diplomas.

The 33 patients for whom TiME tools were created at the inpatient unit ranged in age from 6 to 21 years. The 16-bed inpatient unit was dedicated to the assessment and treatment of children and young adults with I/DD who engaged in severe and treatment-resistant problem behavior. The program served patients across the country and around the world. All 33 patients included in this study had I/DD, as well as autism, sleep and feeding disorders, stereotypic movement disorder with self-injurious behavior, and various genetic and/or metabolic and chromosomal disorders.

Although all 92 students/patients experienced co-occurring language challenges, communication skills varied considerably. Some used augmentative and alternative communication (AAC)—including high- and low-tech devices, pictures, gestures, and modified signs—to communicate. Some communicated verbally using simple one- to two-word phrases. Some experienced speech sound disorders that negatively impacted speech intelligibility. Others spoke in longer sentences but engaged in frequent off-topic monologues and did not limit their responses to relevant details. All needed support describing their strengths and/or advocating for their support needs. Institutional review boards approved the retrospective analyses of the 92 de-identified TiME transcripts.

5.2. Data Collection and Analysis

To prepare the data corpus, all 92 TiME tools were transcribed verbatim by SLPs at each of the three research sites. These transcripts captured the written content on each page of the TiME tool, including both informational statements and recommended strategies. De-identified transcripts were then shared with members of the research team. Content analysis took place in several stages. First, the entire team reviewed a sample of six transcripts and suggested major content domains and information types for inclusion in the analysis. The first author then reviewed a larger sample of transcripts using these initial coding categories to ensure the team was not overlooking anything significant, made minor modifications to the coding system, and created a codebook to ensure reliable coding. Entries for each code included a definition, instructions for when and when not to use the code, and illustrative examples. The first author then coded all 1200 sentences found in the 92 transcripts for (a) content domain and (b) type of information.

Content domains included the following coding options (see Table 1 for examples of typical sentences falling within each content domain):

Table 1. Examples of typical TiME content.

Personal Information
Likes and Hobbies	“I like hearing jokes and laughing with you”. “I like to voice characters such as Barney, Batman, and Bugs Bunny”. “I like to go swimming, for walks, and visit elevators”.
Resume and Work Experience	“At Walgreens, I worked on stocking shelves, cleaning the floor, and organizing drinks in the refrigerator”.
Communication
Communication Modalities	“I use a speech-generating device”. “I’m a nonverbal communicator. This means I don’t talk. I communicate by looking at objects, physical leading, and reaching”. “I’m a verbal communicator. I talk to you using single words and short phrases”.
Supporting Receptive Lang	“Say my name to get my attention. Wait until I look at you to speak”. “Give me one direction at a time”. “Speak slowly”. “Use 2–5 words when asking questions and giving directions”.
Supporting Expressive Lang	“Sometimes it can be hard to understand my words. If you are having trouble understanding me, let me know by saying, ‘I didn’t understand’”. “Written and visual choices help me answer”. “Give me time to think”.
Learning Styles/Preferences
Learning Strengths and Challenges	“I am good at sorting by shape and color”. “I get distracted easily”.
Ideal Learning Environment	“It helps if you keep materials out of my work area until I’m ready to use them”. “I like working in quiet places where it is not crowded”. “I like routines”.
Tools and Strategies	“I can set alarms to help me remember”. “Checklists and schedules help keep me on track”. “I learn best when people model new tasks and show me what to do”. “I may need a human reader and scribe to help me with reading, writing and typing”. “I like it when you praise me for my work”.
Behavior/Emotion Regulation
Challenging Situations	“Some things that make me upset are loud and unexpected noises”
Challenging Behaviors	“Sometimes when I feel frustrated or overwhelmed, I bite my hand and yell loudly”. “My problem behaviors include grabbing and hitting others and hitting my head”.
Behavioral Support	“If I am upset, help me by asking, ‘What do you want?’ and pointing to my iPad”. “I can use different strategies when I feel frustrated. They include deep breathing, hand squeezes, and talking to an adult I trust”. “Please block any head-directed self-injurious behavior to keep me safe”.
Supporting Self-Advocacy	“When I need help, I am learning to say, ‘Please help me.’” “Sometimes I ask for help when I don’t need it. Ask me to try and solve the problem first”.
Diagnoses and Medical Conditions
Diagnoses/Medical Conditions	“I have seizures”. “I also have a mood disorder and disruptive behavior disorder”.
Support Strategies	“I wear a medical bracelet”. “I wear glasses when I read”. “I self-feed a regular diet, but have a gastronomy tube”.
Mobility/Motor Challenges and Supports	“When I am walking down the stairs, I hold the railing and take one step at a time. Someone needs to stand behind me”.
Safety Issues and Supports	“I love dogs, but I may not read their cues. Please watch me closely around unfamiliar animals”. “I’m really fast and may run away from you in parking lots and public places. Please hold my hand and stay close to me”.

• Personal Information (P)—This code was used for sentences about family, interests/hobbies, personality traits, work experiences/formal jobs, things that are difficult due to disabilities, and generic likes and dislikes.
• Communication (C)—This code was used for sentences about communication modalities, expressive strategies (i.e., how the individual communicates), receptive strategies (i.e., how best to speak to the individual), communication challenges, managing conversation breakdowns, and issues related to processing time during communication.
• Learning Tools and Preferences (L)—This code was used for sentences that referred to learning challenges (e.g., distractibility, difficulties transitioning from one activity to another) and learning supports (e.g., preferences for work/learning environment, schedules/checklists, need for adult support/praise, and environmental modifications).
• Behavior/Emotion Regulation (B)—This code was used for sentences related to challenging behaviors, emotional upset of any kind, strategies to support emotion regulation/sensory dysregulation, behavior plans, and reinforcers.
• Asking for Help (H)—This code was used for sentences referring to the individual’s ability to self-advocate/ask for help, or how adults can support the individual’s self-advocacy.
• Diagnostic/Medical (D)—This code was used for sentences referring to diagnoses or other medical conditions/needs such as allergies, seizures, overheating, medications, eyeglasses, feeding tubes, and movement breaks.
• Mobility/Motor Issues (M)—This code was used for sentences referring to gross and fine motor control, how the individual sits/stands/walks, and any adaptive tools necessary to support mobility/motor functioning (e.g., adaptive scissors).
• Safety (S)—This code was used for sentences referring to any dangers to be aware of that are not included under another category, as well as strategies for supporting the individual’s safety.

Information type included the following coding options:

• Informational Statement (I)—This code was used for sentences that provided information about the individual but were not stated as directives.
• Recommended Strategy (R)—This code was used for sentences formulated as directives.

To determine how much information was included in TiME scripts, we averaged the number of sentences included in TiME scripts across schools, the inpatient unit, and all sites combined. To determine how often TiME transcripts referenced each content domain, we counted each sentence coded for the content domain within transcripts and calculated the mean frequency across schools, inpatient unit, and all sites combined. We also calculated the frequency of sentences referencing each content domain as a proportion of the total number of sentences across schools, inpatient unit, and all sites combined. These same calculations were conducted for each information type. To determine if the frequency with which content domains and/or information types were mentioned differed significantly across settings (i.e., between schools and the inpatient unit), we compared means for each. Statistical significance was calculated using a series of two-tailed t-tests, and p-values of less than 0.05 were reported.

5.3. Inter-Rater Reliability

Inter-rater reliability for the coding system was assessed by having the second author code a random sample from each of the three sites, or 30% of the 92 TiME transcripts. Inter-rater reliability was calculated by dividing the total number of agreements between the first and second authors by the total number of disagreements between the two authors and multiplying by 100. Inter-rater reliability was 89.5% for content domains and 96.1% for information types.

6. Results

6.1. Information Overall

On average, TiME transcripts across all site types were 49.35 sentences in length (see Table 2). TiME transcripts created by the inpatient unit tended to be more than twice as long as TiME transcripts created by the schools (means of 76.79 versus 34.0 sentences, respectively).

Table 2. Mean occurrences and percentages of each content domain and information type within TiME transcripts.

	Across School Sites		Inpatient Unit		Across All Sites
	Mean	Percentage	Mean	Percentage	Mean	Percentage
Content Domain
Personal Information	6.54	(19%)	12.67	(16%)	8.74	(18%)
Communication	10.63	(31%)	18.45	(24%)	13.43	(27%)
Learning Tools and Preferences	8.02	(24%)	18.09	(24%)	11.63	(24%)
Behavior/Emotion Regulation	2.10	(6%)	16.15	(21%)	7.14	(14%)
Asking for Help	1.05	(3%)	1.58	(2%)	1.24	(3%)
Diagnostic/Medical	0.83	(2%)	3.39	(4%)	1.75	(4%)
Mobility/Motor Issues	0.31	(1%)	0.64	(1%)	0.42	(1%)
Safety	0.1	(0%)	1.39	(2%)	0.57	(1%)
Other	4.42	(13%)	4.42	(6%)	4.42	(9%)
All Content Domains	34	(100%)	76.79	(100%)	49.35	(100%)
Information Type
Informational Statement	20.1	(59%)	54.45	(71%)	32.43	(66%)
Recommended Strategy	13.4	(41%)	22.33	(29%)	16.91	(34%)

6.2. Content Domains

The most common content domains across sites were communication (mean = 13.43 or 27%), learning tools and preferences (mean = 11.63 or 24%), personal information (mean = 8.74 or 18%), and behavior/emotion regulation (mean = 7.14 or 14%) (see Table 2). Mean occurrences for all other domains (i.e., asking for help, diagnostic/medical, mobility/motor issues, and safety) were mentioned on average less than five times per story transcript. The four content domains most common across all sites were also the most common across each of the two site types, but while school transcripts followed the same order of frequency, patterns for the inpatient unit were somewhat different: For the inpatient unit, the first two content domains were still communication (mean = 18.45 or 24%) and learning tools and preferences (mean = 18.09 or 24%), but behavior/emotion regulation (mean = 16.15 or 21%) came in third, instead of personal information (mean = 12.67 or 16%). When comparing mean number of mentions of each content domain across sites, we found highly significant differences (i.e., p-values of <0.001) for all domains except asking for help (i.e., p-value of <0.05) and mobility/motor issues for which there were no significant differences (see Table 2).

6.3. Information Types

Informational statements were the most common information type across sites (mean = 32.43 or 66%), and recommended strategies were somewhat less common (mean = 16.91 or 34%) (see Table 1). We found the same pattern when looking at data for each of the site types, but again, numbers were much higher for both categories within TiME transcripts created for the inpatient unit, as stories were longer. When comparing the mean number of information types across sites, we found significant differences for both informational statements and recommended strategies (i.e., p-values of <0.001) (see Table 3).

Table 3. Comparing TiME content across site types.

	Schools		Inpatient Unit		Differences		t Stat	Effect Size
	(n = 59)		(n = 33)		Across Site Types
	Mean	SD	Mean	SD	Mean	SD
Content Domain
Personal Information	6.54	(6.36)	12.67	(5.37)	6.12	(3.24)	8.71 **	1.89
Communication	10.63	(5.61)	18.45	(5.39)	7.83	(3.26)	11.05 **	2.4
Learning Tools and Preferences	8.02	(4.48)	18.09	(6.61)	10.07	(3.99)	11.6 **	2.52
Behavior/Emotion Regulation	2.1	(3.07)	16.15	(6.41)	14.05	(3.89)	16.6 **	3.61
Asking for Help	1.05	(0.9)	1.58	(0.94)	0.52	(0.98)	2.47 *	0.54
Diagnostic/Medical	0.83	(1.76)	3.39	(2.09)	2.56	(1.47)	8.0 **	1.74
Mobility/Motor Issues	0.31	(1.28)	0.64	(1.32)	0.33	(1.12)	1.36	0.3
Safety	0.1	(0.55)	1.39	(1.9)	1.29	(1.39)	4.27 **	0.93
Other	4.42	(2.38)	4.42	(1.46)	0	(1.16)	0	0
Information Type
Informational Statement	20.12	(11.01)	54.45	(12.67)	34.34	(7.51)	21.03 **	4.57
Recommended Strategy	13.88	(5.98)	22.33	(6.16)	8.45	(3.71)	10.49 **	2.28

** p < 0.001, * p < 0.05. Effect size of >0.02 = small, >0.05 = medium, >0.08 = large.

6.4. Typical Story Content

Based on an informal qualitative analysis of the TiME transcripts, we describe the most common ways information from the eight content domains was shared and any apparent differences between how the schools and inpatient unit shared information about students/patients’ strengths and support needs (see Table 1 for examples of typical TiME content within each content domain).

Personal information. All TiME transcripts contained some content (i.e., two or more sentences) providing personal information. Nearly all of this content was strengths-based, not deficit-based, emphasizing interests, hobbies, skills, and other details that presented students/patients as unique, multi-faceted, and likable. The two school sites, where TiME tools were created in preparation for post-school transition, also frequently included information about students’ resumes/job experiences (e.g., names of employers, and key responsibilities such as shelving books, bagging groceries, delivering mail, and wiping down tables). In terms of TiME format, both school sites and the inpatient unit tended to begin TiME transcripts with personal information about students/patients.

Communication. All TiME transcripts contained at least some content about communication, and information about students’/patients’ communication styles and strategies was the most consistent across sites. For example, most TiME transcripts contained information about student/patient’s communication modalities (e.g., speaking versus non-speaking communication, low- and high-tech AAC options). Most TiME transcripts contained content about how to support receptive communication, including getting the student/patient’s attention (e.g., say my name), the maximum number of words to use when addressing the student/patient, and the importance of breaking instructions into manageable chunks. Most TiME transcripts also included content about how best to support the student/patient’s expressive communication (e.g., the need for wait/processing time, the benefit of written and visual choices, and the importance of letting the student/patient know if you do not understand what they said so they can repair the breakdown). Many of the TiME transcripts created by the three sites divided the communication section into separate sub-sections (e.g., “How to Talk to Me”, “How I Talk to You”, and How I Interact”).

Learning tools and preferences. All TiME transcripts contained at least some content about learning tools and preferences, although emphases varied across site types. Transcripts commonly included information about the student/patient’s learning strengths (e.g., understanding math concepts, tech literacy), learning-related challenges (e.g., distractibility, motivation issues), ideal learning environment (e.g., quiet, uncluttered spaces), and other learning preferences (e.g., hands-on learning, predictable routines). Most commonly, TiME transcripts contained information about preferred tools and strategies for learning (e.g., setting alarms, following schedules, modeling new tasks, and enthusiastic praise). There were no apparent differences in story content across sites or site types.

Behavior/emotion regulation. Information addressing this content domain varied more dramatically across site types than any other domains. TiME transcripts created at the inpatient unit always included content (i.e., between three and 40 sentences) about behavior/emotion regulation. This was not true for the school sites, both of which only sometimes included information about students’ behavioral challenges/support needs, and when they did, included minimal information addressing this content area (i.e., no more than 2–3 sentences). When provided, behavioral content across sites commonly included information about challenging situations for students/patients (e.g., loud noises, changes to schedule, non-preferred tasks), their most challenging behaviors (e.g., grabbing and hitting others, self-injurious behavior, property destruction, yelling, and escape/avoidance), and strategies for supporting students/patients through difficult situations (e.g., talking/moving calmly around the student/patient, encouraging them to take breaks, offering hand squeezes). TiME transcripts developed for the inpatient unit also frequently provided detailed information about patients’ behavior plans and instructions on keeping patients and others safe during behaviorally difficult moments.

Asking for help. Although there was only a minor amount of content across TiME transcripts dedicated to addressing how students/patients asked for help or were working on self-advocacy goals, almost all TiME transcripts contained at least some content (i.e., one to two sentences) about this. Primarily, transcripts provided information on students/patients’ goals related to self-advocacy, and strategies for supporting goal mastery in this area. School sites were more likely than the inpatient unit to include information about self-advocacy goals.

Diagnostic/medical. This was not a major content domain. Information typically included names of students/patients’ diagnoses and medical conditions (e.g., autism, intellectual disability, ADHD, Prader–Willi Syndrome, mood disorder, seizure disorder, allergies, and pica), as well as strategies for supporting these conditions (e.g., reading glasses, gastronomy tube, medical bracelet). As with behavior/emotional regulation, TiME transcripts created by the inpatient unit usually contained more extensive information about patients’ diagnoses and medical support needs.

Mobility/motor issues. Only a few TiME transcripts from the three sites included information on mobility/motor issues since only a few students/patients required special support in this area. One of the two schools never included information on mobility. Types of information included in this section primarily addressed motor challenges (e.g., walking down stairs, sitting down in a chair, fine motor tasks, and gross motor stamina), as well as strategies for support (e.g., providing physical supports, offering adaptive tools, using orthotics or a wheelchair).

Safety. Although only a few TiME transcripts created by schools included safety information, most TiME transcripts created by the inpatient unit included at least minimal content (e.g., one or two sentences) about keeping the patient safe. Typically, transcripts identified key safety issues (e.g., being around water, interacting with animals, running across streets), as well as strategies for supporting students/patients (e.g., providing careful supervision in these contexts and, in some cases, holding hands).

Summary. Overall, each site developed idiosyncratic ways of creating TiME tools that used similar content across students/patients, as well as recurring transcript structures, while still retaining enough variation to reflect individual student/patient profiles.

7. Discussion

Findings from this study contribute to the field in several ways. First, based on our analysis of TiME transcripts across three sites and two different site types, it appeared the tools consistently addressed a wide range of content areas—providing holistic portraits of individual students/patients as opposed to focusing solely on one domain or another. Overall, some content areas were represented more frequently and comprehensively than others. For example, communication and learning styles/preferences almost always included more detail than areas like motor/mobility challenges and safety. This seemed to reflect the orientation of the tool towards individual student/patient goals and the content of those goals. As with IEPs, certain domains naturally received more attention than others.

The multi-disciplinary nature of the content included in all 92 TiME tools also reflected the collaborative teaming that goes into the creation of TiME. As mentioned earlier, TiME is the product of input not only from the individual’s SLP but also from the individual’s entire educational/clinical team, including—whenever possible—the student/patient and their family. By involving everyone who knows the individual, TiME captures the multi-dimensionality of each student/patient.

Our findings further indicated that TiME transcripts varied considerably in length. Stories created with and for students transitioning from high school and post-high school to adult settings tended to be shorter than those created for patients transitioning from an inpatient unit back to their schools. This made sense, given the different audiences for whom these tools were created. For transition-aged students at the two schools, tools were created primarily for sharing with adult service providers by the students themselves or with minimal support from a teacher or job coach. Because students’ attention support needs were often variable, creating and sharing shorter stories made sense. It is much easier to stay focused while sharing a 20-page story than a 40-page story. Furthermore, one of the original goals of TiME was to capture the individual’s ‘voice’ as much as possible, which meant creating scripts that used concise, easily comprehensible words and sentences that matched the language levels of the individual sharing the tool.

In contrast, stories created at the inpatient unit incorporated input from the entire clinical team (including parents/guardians), but direct input from the patients themselves was typically limited to their personal information. This was because most patients experienced significant I/DD, their behavioral challenges and support needs were complex, and their receptive/expressive vocabularies tended to be very limited. Stories created at this site were intended as training documents to be shared by parents when their children transitioned from the inpatient unit into their new educational settings. Because TiME was designed for use with teachers, BCBAs, and other educational professionals, it made sense to include more technical details. Although creating and sharing their stories was not a central feature of TiME for patients, SLPs and families noted that the person-centered nature of TiME nonetheless provided an important counterpoint to the standard clinical reports and other documents focusing solely on patients’ deficits. Several parents noted that TiME highlighted their child’s strengths and skills they were bringing to their new schools, setting a positive tone and potentially alleviating some of the anxiety surrounding the transition.

TiME content also varied significantly across site types. This was likely because the two settings used TiME to meet different aims and target different users/audiences. For example, the most significant content difference was the amount of information focusing on behavior. Because the inpatient unit catered to patients with intensive behavioral support needs, it made sense for SLPs to adapt TiME to include comprehensive information about patients’ behavioral challenges and behavior plans. Similarly, TiME created by the inpatient unit often contained more extensive information about patients’ diagnoses and medical conditions. Again, this is likely explained by the fact that these individuals tended to present with more complex medical needs and conditions than those attending the two schools. Some individuals/families in school settings also opted out of sharing specific diagnostic information as part of their TiME tools because they did not want to share potentially stigmatizing information with employers and coworkers (Lindsay et al., 2021). TiME tools created at the inpatient unit also included more safety-related content. This was unsurprising, given the much higher levels of challenging behaviors, including self-injury, aggression, and escape/avoidance (Sakai et al., 2014). Finally, there were fewer self-advocacy goals in TiME tools created at the inpatient unit than at schools. This was likely influenced by the relative ages of patients (many of whom were still in elementary and middle school) and students (who were all in high school or post-high school). Developing self-advocacy skills is a key component of preparing for secondary transition, regardless of developmental level, but is not usually as central a goal for younger children (Zuber & Webber, 2019).

The TiMe tool’s strengths-based approach, customizable platform, and first-person perspective relayed the students/patients in a more humanizing and empowering light. The fact that TiME tools are strengths-based, customized, and told from the point of view of the individual also helped humanize them. All transcripts were made up of “I” statements and began with several examples of the individual’s likes and dislikes, hobbies and interests, and ways in which teachers and peers could interact with them (e.g., telling jokes, exchanging high fives). In general, TiME tools stayed focused on the positive, and past studies of TiME based on interviews with employers and job coaches suggest that the experience of viewing the individual’s TiME tool often improves attitudes toward them and fosters feelings of personal connection (Müller et al., 2018, 2022).

The tool can also empower viewers of TiME. For example, information like “It is hard for me to make eye contact with others. Even though I may not look at you while we’re hanging out, I’m glad you’re spending time with me”, can help reduce anxiety on the part of new adults unfamiliar with the patient. Especially given that many of the patients for whom TiME tools were created had a history of aggressive, disruptive, and dangerous behaviors, TiME played a critical role in supplying viewers with tools for communication and positive interaction.

7.1. Practical Implications

For SLPs considering the possibility of using TiME with their students/patients, findings from this study provide positive evidence that the tool can be meaningfully adapted to various populations, settings, and audiences. The two types of settings included in this study were quite different, and yet SLPs were able to customize tools for use with both. Readers can consult Table 1 if interested in creating TiME tools for their students/patients.

The option of including individuals in the creation and sharing of their tools, while not always possible, is a key feature of TiME. Involvement in the process can help facilitate students’ learning about their strengths and preferences. For example, including information in TiME scripts about specific accommodations in their IEPs builds students’ self-awareness and, by reinforcing this information, can better position students to advocate for needed support.

Participation in creating and customizing their TiME tools also supports self-determination. As Vicente et al. (2020) indicate, opportunities for choice-making play a key role in self-determination. The process of designing their personal TiME tools creates opportunities for individuals to choose which pictures and videos they wish to include, select fonts and background colors, and make other decisions about the form and content of their TiME—all of which foster a sense of agency.

TiME tools can also be used to support recall skills and increase accountability. For example, making and sharing the tool serves as a prompt when the student is viewing it with a novel adult. By reminding students of their specific skills and strategies, TiME may reinforce the likelihood of their use. In terms of accountability, when a student shares their TiME tool with a new adult in their lives, and the TiME tool includes information (for example) about the student’s self-advocacy goals, they are reminded that this other adult is now aware of the student’s tendency to ask for help when they do not need it. This may increase the likelihood that the student will first try to complete a task independently before requesting help.

7.2. Limitations and Future Directions

As mentioned earlier, despite the intuitive appeal of digital portfolios, there is a lack of research in this area. There have now been several studies about TiME, including analyses of stakeholder feedback on their impact and value, and measures of growth in knowledge following exposure to transition-aged students’ TiME (Müller et al., 2018, 2022), but there is still a need for more research to help establish digital portfolios—and TiME specifically—as evidence-based tools. To this end, we recommend future research that continues to measure the impact of TiME on a wide range of team members across a wide range of settings. For example, TiME could potentially be used with students who are deaf/hard of hearing or experiencing traumatic brain injury.

Given the promising nature of TiME, we recommend the future expansion of its use to any student/patient with I/DD and communication support needs transitioning to a new learning environment. Some of the ways to increase the adoption of TiME include (1) encouraging schools and inpatient clinics to adopt policies requiring the creation of TiME for all eligible students/patients, (2) developing IEP goals and/or creating self-advocacy groups so SLPs and teachers have time to integrate the making and sharing of TiME into students/patients’ schedules, and/or (3) involving transition coordinators early on in the process of creating TiME to serve as liaisons between the current school/inpatient setting, families, and new providers/schools—thereby increasing the social validity of the tool and promoting stakeholder buy-in.

8. Concluding Remarks

This study breaks new ground by examining how SLPs working with various neurodiverse populations or profiles used TiME to support transition from educational/clinical settings to new learning environments and to share relevant information with novel communication partners. Findings suggest that the tool can be adapted for different groups and audiences—and that content and length will vary based on different aims. This article contributes to the small but growing body of literature on TiME and encourages further exploration of its many possibilities.