People with disabilities have been integral to positive changes in social treatment, civil protections, and disability policy in the United States through their own advocacy. Throughout history, adults with intellectual and/or developmental disabilities (IDD) have spearheaded many legislative movements including Sect. 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (Shapiro, 1994). The effects of the self-advocacy movement range from deinstitutionalization, increased accessibility of physical spaces, and greater inclusion in the community. Put simply, self-advocacy by individuals with IDD has driven the disability rights movement and continues to grow. As the national agency for self-advocates with disabilities, Self-Advocates Becoming Empowered (SABE) states, “We believe self-advocates are the professionals, ask us first, and we should be the decision makers and planners in all our daily living activities” (1997).

While self-advocacy has been instrumental for many protections and supports for individuals with IDD, self-advocacy was only addressed in education under the 1997 reauthorization of the Individuals with Disabilities Education Act (IDEA). Specifically, IDEA requires transition planning to begin at age 16 among individuals with disabilities. At that age, individuals with disabilities should take the reins of their own advocacy in transition planning and, more generally, individualized education program (IEP) meetings. Within the context of education, self-advocacy has several benefits including improved post-secondary education outcomes (Remai, 2019; White et al., 2018). In alignment with the rallying cry of the disability rights movement, “Nothing about us, without us” (Charlton, 1998), it is critical to explore the lived experiences of individuals with IDD in the special education system in the United States. Thus, the purpose of this study was to examine perceptions of individuals with IDD about their experiences with self-advocacy and civic engagement in special education.

It is important to characterize self-advocacy among transition-aged youth with IDD in special education. When youth with IDD are involved in self-advocacy and their own transition planning, there is an increased likelihood of post-secondary education and competitive employment (Mazzotti et al., 2021; Southward & Kyzar, 2017). Yet, research suggests that youth with IDD are minimally involved in educational decision-making, taking a passive role in their IEP meetings (Sanderson & Goldman, 2021). For example, in a sample of 130 IEP meetings, Martin and colleagues (2006) found that youth with disabilities only spoke for 3% of the total intervals in the meetings. Despite being conducted 10 years later, in a qualitative analysis of nine IEP meetings, Doronkin and colleagues (2019) found that even though students attended their IEP meetings, the discussion and decision-making took place as if they were absent. Additionally, student age appears to matter, specifically with attendance and participation at IEP meetings being correlated with students being in upper grades (e.g., in high school versus middle school or more time in high school versus less time in high school; Sanderson & Goldman, 2021). Research is needed to understand how youth with IDD engage in self-advocacy within educational contexts, including possible differences by age or grade level.

Given the long-standing history and impact of self-advocacy among adults with IDD, it is critical that youth with disabilities participate in civic engagement. Research is clear that self-advocacy leads to improved individual outcomes including a greater likelihood of living independently, engaging in competitive employment, and avoiding abuse (Fenn & Scior, 2019). However, less research has been conducted about how youth with IDD conduct civic engagement to improve outcomes for the disability community. The limited research about civic engagement among youth with IDD suggests there are few opportunities for civic engagement. For example, few students with IDD receive instruction about how to vote or participate politically (Agran & Hughes, 2013). In the last IDEA reauthorization, out of all the written and in-person testimony, less than 1% (n = 3) was from individuals with disabilities (York, 2005). By characterizing civic engagement among youth with IDD, we can better understand their experiences with legislative advocacy.

In the context of special education, it is critical to center the voices of individuals with IDD. Indeed, there have been recent calls suggesting the importance of including individuals with IDD in research (both as participants and on research teams; Shogren, 2022). By understanding the lived experiences of youth with IDD, we can have more informed implications about ways to support youth with IDD to develop self-advocacy skills, increase their meaningful research participation, and improve their special education experiences. Thus, the purpose of this study was to explore the experiences of youth with IDD in relation to self-advocacy and civic engagement in special education. We had three research questions: (1) With respect to education, what are the self-advocacy experiences of youth with IDD?; (2) What are the barriers and facilitators to self-advocacy for educational supports among youth with IDD?; and (3) How are youth with IDD involved in civic engagement?

Method

The exploratory nature of this study required a qualitative research design. Specifically, we used a generalist design, which includes qualitative methods for data collection and analysis, but does not adhere to a specific methodology (e.g., case study, ethnography; Lauterbach et al., 2022). By conducting focus groups, we explored how transition-aged students with IDD individually and collectively made sense of their experiences with self-advocacy. We used a social constructionist epistemological lens, which emphasizes the collective process of meaning making and is a methodological fit with focus groups (Koro-Ljungberg et al., 2009). This study was part of a larger project that involved the pilot of a civic engagement program (CEP; Authors, under review) to educate transition-aged youth with IDD about self-advocacy, IDEA, and legislative advocacy for the next IDEA reauthorization. For this study, all data were collected prior to the participants receiving the civic engagement program.

Researcher Positionality and Reflexivity

Our research team included two university researchers, three doctoral students, and two self-advocates with developmental disabilities. Establishing a research team with self-advocates strengthened the development, implementation, and analysis of the focus groups through their first-hand knowledge and lived experiences of special education and self-advocacy. In addition, our team consisted of two family members of individuals with IDD. Altogether, our author team had extensive experience working alongside young adults with IDD as teachers, advocates, and mentors; we each value self-advocacy and self-determination among people with IDD. Our professional and lived experiences were strengths in conducting this study and analyzing the data. Additionally, each team member brought their own values and perceptions to the study. To address our experiences, we conducted whole and small group discussions during team meetings when analyzing the data. For example, each team member engaged in peer debriefing and group conversations to identify and mitigate their biases and to resolve disagreements through discussion during analysis.

Participants

Altogether, there were 15 participants in this study. To be included in this study, participants needed to be between the ages of 12–26 and have an IEP. The age range of 12–26 was chosen as parents often report that transition planning should begin at age 12 (e.g., Francis et al., 2018), and 26 is the highest age that an individual can have an IEP in a given state in the United States. On average, participants were 19.75 years of age (range 13–26). Of the participants, 40.00% (n = 6) were from Massachusetts, 26.67% (n = 4) were from Illinois, 20.00% (n = 3) were from Louisiana, and 13.33% (n = 2) were from Maine. Just over half of the participants identified as having autism (53.33%, n = 8) with six participants identifying as having ID and two participants identifying as having Down syndrome. See Table 1.

Table 1 Participant demographics
Full size table

Recruitment

We used criterion and snowball sampling (Creswell, 2013) in collaboration with Parent Training and Information (PTI) centers to recruit transition-aged youth with disabilities. We supplemented recruitment by reaching out to public school transition programs and self-advocacy organizations to recruit students directly through our professional contacts. To reduce attrition, we provided participant stipends ($50) and refreshments. There was no expected sample size needed for this study; we identified redundancy of themes within the 15 participants by reviewing field notes, researcher memos, and transcripts from each focus group.

Procedures

First, we received Institutional Review Board (IRB) approval for this study. If an individual was interested in the study, they were directed to a RedCap website wherein they provided consent. If the individual was less than 18 years of age and/or had a guardian, their guardian provided consent. If the guardian provided consent, then the individual with IDD was asked to provide assent. If the individual with IDD was over the age of 18 and their own legal guardian, the individual provided consent. After providing consent, participants completed a pre-survey via RedCap or hard copy, based on their preference. After completing the survey, participants attended a one-hour focus group.

Data Collection

Upon registering for the CEP, participants completed a brief, demographic questionnaire. The questionnaire included questions about their: age, gender, and type of disabilities. These data were used to characterize the sample.

Semi-structured focus groups occurred at the beginning of the CEP before any content was delivered. We scheduled focus groups to occur prior to the CEP so participant responses would not be influenced by the content and learning of the CEP. We created the focus group protocol by adapting a focus group protocol that was used to explore advocacy among parents of individuals with IDD (Author, 2017; Author, 2020). All members of the research team helped adapt the protocol by sharing suggestions during research meetings or commenting on the protocol document. Adaptations to the protocol included providing plain language definitions of terminology and making questions more concrete and specific (Kim et al., 2022). The protocol was then piloted with four young adults with IDD, resulting in several changes. For example, based on the pilot, we revised questions to use more plain language (e.g., more concise, used lawmaker instead of legislator) and to provide definitions of key terms (e.g., advocacy). The final protocol had 16 open-ended questions with follow up probes (e.g., “Do you advocate (or speak up) for yourself at school?” “If yes, what do you advocate (or speak up) for?” “If no, why don’t you advocate (or speak up) for yourself at school?”). These 16 core questions were organized into six topics: participation in IEP meetings, asking an educator for help, youth advocacy, parent advocacy, interactions with legislators, and possible improvements to special education. See Table 2 for the focus group protocol.

Table 2 Focus group protocol
Full size table

We conducted five focus groups: two in Illinois, one in Maine, one in Massachusetts, and one in Louisiana. All focus groups were conducted in English. Each focus group had two facilitators; four of the focus groups were co-facilitated by self-advocates with IDD. On average, there were three participants at each focus group. The average length of each focus group was 44 min. At least one researcher at each focus group wrote descriptive field notes including group details, participant reactions, and emerging themes. The field notes included observations of the participants and facilitator, impressions about the focus group protocol, and recognition of the research team member’s own biases. All core questions were asked at each focus group, reflecting 100% fidelity to the focus group protocol. Each focus group was recorded and transcribed verbatim. We had 125 single-spaced pages of transcription data, 21 pages of field notes, and 36 pages of analytic memos for a total of 182 pages of data.

Data Analysis

Data collected from a demographic questionnaire were used to describe the participants. The focus group data were analyzed inductively and systematically. We used Saldaña’s (2016) two-stage coding procedures to analyze the focus group data. First-cycle coding consisted of initial coding with descriptive (i.e., summarized data with a noun), in vivo (i.e., used participant’s own words as codes), and process (i.e., described action in data with verbs) codes; second-cycle coding consisted of pattern coding (Saldaña, 2016). Researchers independently read each transcript to familiarize themselves with the data. Two researchers independently coded all five transcripts. Each line of data was examined and compared with other data. If the line of data represented a distinct concept or idea, it was given a code; if the line of data represented an idea from an established code, it was given the same code. A line could have multiple codes if multiple concepts were represented. Two additional researchers reviewed and summarized each transcript, noting key experiences of self-advocacy and patterns in the data. The researchers shared summaries, compared codes, and resolved differences via discussion. This resulted in over 200 open codes across the five focus groups that were refined and eventually synthesized into 18 categorical codes (e.g., IEP meeting attendance, IEP meeting participation, knowledge of accommodations, examples of asking for help, examples of advocacy, parent advocacy, interactions with legislator, changes to special education).

In the second stage of pattern coding, the categorical codes were further analyzed to identify typology and relations among and between the codes and categories. In this stage, we looked at fit both within categories (i.e., how all codes fit in a category) and across categories (i.e., how categories relate to each other). Researchers wrote analytic memos (Saldaña, 2016) that included coding summaries describing how codes and categories fit together and related to each other, as well as identifying patterns in the data within and across the focus groups. For example, we all recognized that even though most participants attended IEP meetings, they did not describe advocating or participating actively in their IEP meetings. Our research team met weekly and communicated outside of weekly meetings to discuss the analytic memos focusing on categories, patterns, and eventually, themes. Themes were developed through team discussions by identifying key patterns in the data and describing how they fit together. For example, we eventually connected participants’ frequent advocacy at school about their accommodation needs or specific situations to their minimal advocacy in IEP meetings. This suggested potential difference in advocacy related to timing (immediate or longer term), context (informal interaction with peer or educator versus a formal IEP meeting), and level of abstraction (responding to a specific need versus advocating for or working towards broad IEP goals). We collectively and iteratively developed a narrative outline containing themes that eventually structured the study’s findings.

Trustworthiness

To ensure trustworthiness, we used quality indicators and credibility measures to guide this work (Brantlinger et al., 2005). We selected appropriate participants based on criteria relative to the research questions. Specifically, the age range for our inclusionary criteria was designed such that the youth currently or recently received special education services to ensure the contemporariness of their feedback. The focus group protocol was iteratively developed, piloted, and revised accordingly. Each focus group was recorded and transcribed verbatim, and confidentiality was maintained. Regarding credibility, we employed investigator collaboration and triangulation by involving multiple researchers and peer debriefing. We also used thick, detailed description by including many participant quotes and descriptions of advocacy examples from their data.

Compliance with Ethical Standards

There were no potential conflicts of interest in this study. All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. The study received approval from the University Institutional Review Board to conduct research with human subjects. Each participant provided informed consent before participating in the study.

Findings

The thematic findings are organized by the research questions. Regarding self-advocacy experiences, we found that participants described advocating at school for what they needed, but often not during their IEP meetings even though most participants had attended at least one IEP meeting. Regarding facilitators and barriers, participants described that both educators and families could facilitate or hinder their self-advocacy. Additionally, some participants described needing to learn advocacy skills or be comfortable advocating because it seemed challenging at first. Lastly, participants reported little involvement in civic engagement, though they had ideas about what they would advocate for if speaking with a legislator. See Fig. 1 for an overview of findings.

Fig. 1
figure 1

Findings from study

Full size image

Self-Advocacy in School, but not During IEP Meetings

Youth Advocated for What They Needed in School

Participants described advocating for what they needed in school. Their advocacy included (a) accommodations based on their learning or other needs, and (b) assistance or guidance solving a specific problem. Multiple participants reported that they engaged in self-advocacy at school by requesting individualized supports and accommodations for their learning. For example, some youth advocated for having: extra time on tests, test-taking in different rooms, accessible locks for lockers, and tests read aloud. Amy, a participant with autism and ID who recently aged out of school services, shared, “If I have like a question about the tests, they [teachers] will explain, like in detail to my point of view of how I need it explained to me.” Similarly, John, a 14-year-old with autism, asked for clarification and support “when I don’t understand something, like the homework.” Todd, a 14-year-old with autism and ID, advocated for support keeping up with quick-paced lessons:

Todd: Because I’m always having a troubled time remembering, like, like, “Oh, my God. I don’t know what you said. It was so fast. Can you repeat that slowly?“

Focus group facilitator: I see, so if a teacher is going too fast, or you don’t understand, you ask them to repeat it.

Todd: Yes.

Participants described their advocacy as in the moment (e.g., before taking a test, during a class) and not during IEP meetings.

Several participants also described advocating at school when they needed help in response to a specific problem. Their advocacy usually included seeking guidance or assistance from an educator to resolve an issue or respond to an encounter. For example, Kate, a 14-year-old with a learning disability, reported having a fear of public speaking. Her teacher wanted the students to do a presentation for the class which made Kate uncomfortable. Kate reported advocating for herself by speaking to her teacher about her fear in the hallway. As a result, Kate reported “I just did the presentation on one of the computers.” Travis, a 20-year-old with autism, advocated to a special education teacher about changing transition programs from one he felt was not meeting his needs to his current program with what he described as more supportive teachers. Jack, a 19-year-old with ID, told his teacher and paraprofessional he wanted to make new friends, so they helped him explore local clubs and activities, and he joined a recreational basketball league.

Youth Attended, but Did Not Often Advocate in IEP Meetings

All participants, except for one, reported attending at least one of their IEP meetings. Specifically, 11 participants reported attending multiple IEP meetings while three participants reported attending exactly one IEP meeting. Many participants stated they did not speak up or share input during their IEP meetings because they did not understand the purpose of the meeting, they did not know what to say, and/or the team did not provide opportunities for them to participate. Multiple youth shared that they did not feel they were able to make choices or give input at their own IEP meetings. For example, Todd explained about an educational placement discussion at his IEP meeting, “I didn’t understand it [what was being said regarding the disagreement about placement] so I just sat and just listened.” He went on to describe IEP meetings as “pretty much good,” but said about his participation in them: “I just sit, listen to what they have to say, and as usual, when it ends, I say, ‘Bye,’ [and] wave.” Other participants similarly reported being receivers (versus conveyors) of information at IEP meetings. For example, Jamal, a 25-year-old with autism, reported, “They [IEP meetings] were definitely intimidating. Especially with the staff around, they feel more authoritative. And not as more cooperative around, you don’t really feel like you have a choice of input on things. They’re just kind of telling you the information.” Other participants commented that IEP meetings should be more informal and purposeful. For example, Walter, a 25-year-old with ID, reported:

Allowing the person to speak their mind by allowing them to say, “Hey, can you explain that? Can you explain that to me at little bit more?” Or, “where are we going? What do we want to do? How can you?” The goal is to bettering the person that’s aging out of high school. So, you should, I just wish it be okay to ask that question. Like, are we allowed to ask the question?

Educator Roles in Impacting Youth Self-Advocacy

Participants frequently described direct involvement of their educators (e.g., special education teacher, general education teacher, paraprofessional, related service provider) and families related to their advocacy at school. Educator responsiveness was a key factor in youth self-advocacy. Family advocacy included the roles of teaching youth the importance of advocacy and how to advocate, helping youth obtain appropriate services and supports, and providing a model of advocacy for them. Additionally, participants reported that educators and families contributed to their IEP meetings; most youth reported not advocating during their IEP meetings.

Participant descriptions indicated that having responsive educators who listened to them and were supportive when they spoke up promoted their self-advocacy. Many youth reported that educators were helpful and listened to them. For example, Maya, an 18-year-old with ID, stated, “My teachers will help me. They’re always helpful.” Amy explained about her teachers, “When I have an opinion about something, they’ll listen to me. And they’ll understand what I’m talking about.” Walter reported that educators encouraged (and learned from) his advocacy:

When I explained to her [educator] that, “Hey, these are not working. Can I? Can we do something?” I love that she understood. Like, she really really listened. Because one day I walked into class and I was like, “Nobody listened to us.” And she was like, “What do you mean?” And I said, “Nobody listened to us [in the disability community].” She was like, “You’re encouraging me to do more things with people with disabilities.” So, yeah, she was more encouraging.

Responsive educators seemed to reinforce youth when the youth self-advocated because they felt successful when they were listened to and problems were resolved or addressed. Educator responsiveness also led to trusting relationships, such as was reflected in a non-academic example related to identity that Christopher, a 21-year-old with Down syndrome, shared: “I remember talking to my social worker, two or three of them, about coming out about my sexuality…I think they really helped me with my confidence and bravery about coming out, and now I’ve been out since 2019 or 2020.” Varun, a 13-year-old with autism, also expressed the importance of having a responsive and trustworthy teacher: “He’s really the only one that really listens to me. Because every time I talk to him, I always feel like he’s always, like, he understands what I’m trying to say. Then he handles it.…He really is the only one that I can trust with [because] I walk into his class, [and] I always know he’s there.”

Educators who were unresponsive to youth advocacy were viewed as unsupportive and prevented desired advocacy outcomes. Some participants reported that educators, school staff, and administrators dismissed their advocacy efforts. Varun reported being constantly bullied by his peers at school. Even though he reported the bullying to educators and staff, his advocacy to stop the bullying seemed to be ignored: “When the students bully me at the school, the people at the front office don’t do anything.” Jack also felt that he was ignored when he emailed his special education teacher about going to a particular movie theater during their community outing that was accessible by public transportation (that he needed to take and enjoyed taking). However, the teacher did not want to go to that theater; Jack reported that the teacher’s rationale was because “it [that theater] was too crowded”. Amy reported that, while most special education and general education teachers were supportive of her advocacy, she had a negative experience with the physical education teacher. She reported, “PE, like eighth grade, we had a PE teacher, she didn’t really know that I had some problems with my feet…She [PE teacher] wasn’t as patient.”

Family Roles in Impacting Youth Self-Advocacy

Participants reported that their family members encouraged and supported their self-advocacy in educational decision-making outside of IEP meetings. Most youth reported trusting their family members to advocate for them, felt their families advocated for what was best, and did not disagree with their families’ advocacy on their behalf. Some youth acknowledged that their families put in great effort to advocate for them. A few participants expressed explicitly that their family members taught them how to advocate for themselves. For example, Todd reported that he needed accommodations such as repeated directions, slower pace, and extended time during online classes and that his mother would encourage him to self-advocate for these accommodations: “Mom always helps me to speak up too when I go to class…When I go to class, when I’m on mute, she [mom] has to, like, whisper to my ear.…She says, like, ‘Can you repeat that please?’” Additionally, Christopher reported that his parents and extended family taught him to advocate for himself: “They [parents and grandparents] taught me how important education really is. They tell me how to advocate for myself. And if you need help, ask your parents, or caregivers…and what you need from teachers.” Reflective of her parents’ recognition of the importance of self-advocacy, Amy described that her parents encouraged her to attend trainings about advocacy where, “The [training facilitators] usually will ask me what my goals are. What I tried to advocate myself for, like, what I see myself doing in years later.”

Beyond teaching or encouraging self-advocacy, participants described that their families were very involved in and supportive of what they did both in and out of school. Todd explained, “But my mom has like, for me, like, doctor’s appointments, IEPs, school. She has like three on her plate. That’s so much. And I feel bad. I wish I was there to help, but I really don’t know [how to do] all the stuff that mom does.” Additionally, Amy stated that her parents supported her advocacy by aligning their advocacy with hers: “They [parents] helped me with, like, certain things. Like situations where, for instance, I have to be pulled to the principal’s office for something and they’re [parents] there to back me up.” Martin, a 20-year-old with autism, also turned to his parents for aligned advocacy: “I share [with] my mom. If something is a problem, I share.” Family advocacy directly helped participants, while also providing a model for their own self-advocacy.

Regarding advocacy during IEP meetings, almost all the participants stated that one or more of their parents attended and participated—usually actively—in their IEP meetings. Some youth described other family members (e.g., grandparents) who attended and participated in their IEP meetings. Most youth reported that during IEP meetings their family members shared information about them, supported them to understand the IEP process, and advocated on their behalf. For example, both Todd and Ellie reported that their mothers advocated a lot during their IEP meetings. Todd explained, “Well, when she goes in IEPs and stuff, she speak up herself,” and Ellie concurred about her mother speaking up during IEPs, saying, “Yes, like all the time!”

Some youth specifically reported that their family members provided support before and/or after IEP meetings to help youth understand the information, and ideally, to participate in the meeting (or the next meeting). Walter shared that before his IEP meetings his father encouraged him to think about his career goals and share them with the IEP team. He added:

I didn’t understand the reason why I was sitting in the [IEP] meeting. And I didn’t understand that until I left the meeting. My dad explained it to me. So I kind of felt comfortable because I also had a choice, I also was able to speak my mind because I felt like, “Hey, I wanted to know this. Can you more explain to me?” So, yeah, but some of the other meetings, I didn’t have, I didn’t have a choice. It was like, “Oh, we just planned this.” “Why you didn’t tell me that?” So, that’s the, but, “Hey, it’s cool, I’m just here.”

Amy reported that her parents supported her advocacy during IEP meetings after attending the meeting:

Focus Group Facilitator: Do your parents talk about it before hand? Or like after your.

IEP?

Amy: After. Definitely after.

Focus Group Facilitator: What do you talk about after?

Amy: Like what my goals are. What I want for next year, like what classes I’m going to go into and what ones I need to be placed into.

Nature of IEP Meetings Impacted Self-Advocacy

A facilitator to self-advocacy in IEP meetings was that the meetings were informal, outcome-driven, and strengths-based. Martin expressed pleasure at being able to discuss and plan to take Driver’s Education and the driving test during his most recent IEP meeting. He reported, “You need to drive in school for [a] driver’s license” and that his ability to advocate for taking Driver’s Education reflected both responsiveness by educators and their high expectations for him that he could learn to drive. Some youth viewed the meetings as opportunities to improve their educational programs through further individualization or more inclusive opportunities. Christopher described, “See my teachers, see my parents, talking about me. At IEP, talking about my successes, my weaknesses, seeing where I can go out [into inclusive classes].” Others enjoyed the social interactions and opportunities during the meeting, such as Maya who explained: “To see all my teachers. I get to talk to everyone there.”

Some participants expressed that IEP meetings were unpleasant or not a valuable use of time. Varun reported a negative feeling during IEP meetings:

Varun: Kind of nervous.

Focus group facilitator: Kinda nervous? What makes you nervous?

Varun: It is just like this…quiet.

Varun’s reported that the formal nature of the IEP meeting made it hard for him to interact with the team members. Travis stated about his IEP meetings, “I could have been doing better things like, like playing video games.” Despite the attempted humor in his response, the comment points to his perception that the meeting was not directly useful or enjoyable. Christopher expressed a sense of frustration about educators not being responsive to something he has brought up in his IEP meetings: “I would like to see people let me take an honors class or maybe an AP course class and seeing my potential and not bring me down. I know my own potential.” His comment reiterates the finding of positive experiences in IEP meetings that support self-advocacy being related to a strengths-based approach.

Self-Advocacy Can Be Challenging at First

Participants shared perceptions of advocacy being difficult or initially challenging, suggesting a learning curve or the need for support (e.g., from educators or families) when they begin advocating themselves. Chloe, a 21-year-old with multiple disabilities, described being a self-advocate currently, but recognized she was not initially: “I’m also a self-advocate, but I only knew how to- that was later on when I actually knew how to lead my IEP meeting.” She reported needing to learn how to lead her IEP meetings, which included attending a training and learning from her mother. Similarly, Walter’s earlier example about learning why he should go to his IEP meetings from his father reflects that he attended prior IEP meetings without understanding why he should be there and the purpose of the meetings.

Some participants described that the act of speaking up could be intimidating, at least initially. Todd explained needing to be brave for self-advocacy: “Sometimes it’s nervous…when you’re nervous, you are on the outside. But on the inside, you’re brave and you can just speak. I am like that because I am always on the outside where I’m super, super nervous. But in the inside, I’m brave.” Several participants also described difficulty related to advocacy expectations based on cultural norms, as Jamal described:

It [speaking up] definitely felt terrifying at first. Because especially like, in my family or community in general, you know, respect your elders, respect the adults. So then, when it feels like you’re talking in, not really defiance, but they see it as that when you’re really standing up for yourself. It does feel like maybe I should just back down. Is it worth it? So, it’s definitely frightening at first. Now I’m like, “Oh, we’re equals.” So, I don’t really feel as terrified now, especially when I know like, oh, you’re getting paid anyway, like, why should I feel sad about it or something?

Minimal Civic Engagement Among Youth

Overall, youth described little involvement in civic engagement. The only exception was that Jamal and Walter (both aged 25 and the oldest in the sample) reported voting in past elections, being aware of political issues, and speaking with legislators in the past. Jamal reported:

I actually, you know, started talking with one [lawmaker] because I guess we’re just reaching out to people…I’m like, ‘Hey, I need help with such and such. Is there any chance you can help them?’ And [I] actually got help. And so I’m like, “Oh, they really do help people”.

Later in the focus group, Jamal continued to reflect on the importance of learning to conduct civic engagement:

We [our class] actually took a trip all the way to the state capitol. We got to meet our Governor and the Senator…so I feel like there is a space, because, you know, in the long run, we’re gonna be like, voting citizens. You want to advocate for rights and responsibilities as an American.

Even though there was little civic engagement among the youth participants, when asked what they would advocate for if they were to contact a legislator, all participants had suggestions. Notably, suggestions related to ways to improve special education. Unfortunately, there were no themes across the suggestions given their heterogeneity. Suggestions included: greater physical accessibility of buildings, easier access to accommodations, more inclusion, greater choices in general education and college classes, more opportunities to learn about advocacy, and more field trips. Participants also requested greater funding for education, better training for teachers and paraprofessionals, and more staff to support students with disabilities.

Discussion

Whenever one is considering policy that directly relates to individuals with IDD, it is critical to elicit the viewpoints of people with IDD themselves. This is also true in special education. In this study, we centered the perceptions of transition-aged youth with IDD about their experiences with self-advocacy and civic engagement in special education. We had three main findings. First, youth reported examples of self-advocacy at school; most of their advocacy occurred outside of IEP meetings. In addition to the positive effects of self-advocacy among youth with IDD (e.g., Remai, 2019; White et al., 2018), self-advocacy can also become a positive identity and source of empowerment (Anderson & Bigby, 2017). Our finding that youth reported engaging in self-advocacy to request accommodations and assistance or guidance in problem solving underscores that youth find self-advocacy beneficial and important.

Interestingly, youth self-advocacy often occurred outside of (versus within) IEP meetings. Held at least annually, IEP meetings are the primary decision-making forum for educational decisions. Prior research has similarly found that youth do not speak up during IEP meetings (Martin et al., 2006; Doronkin et al., 2019; Sanderson & Goldman, 2021). The occurrence of self-advocacy outside of IEP meetings prompts the question of why self-advocacy occurs outside versus within IEP meetings. Our findings suggest that students may find IEP meetings inaccessible, may not initially understand the purpose of IEP meetings or why they should be there, and may view them as run by adults for adults. Further, discussing IEP goals may seem abstract or long-term compared to a concrete and immediate need or problem they advocate for at school but outside of IEP meetings. Future research is needed to explore how and when self-advocacy occurs within special education and ways to make IEP meetings more amenable to self-advocacy.

Second, there are factors that can promote or inhibit self-advocacy. From this study, factors included educator responsiveness, family advocacy, and opportunities to meaningfully participate in IEP meetings. Notably, each of these factors are malleable which means that they can be targeted by interventions to change and, thus, improve self-advocacy. Prior research has suggested that parent advocacy can help students with disabilities access needed school services; parents also report that they are modeling advocacy so their children with IDD can self-advocate (Burke et al., 2019). Our study suggests that parent advocacy may indeed support the advocacy of youth with disabilities. More research is needed to disentangle the relation between parent and self-advocacy. For example, while we found that family advocacy facilitated youth self-advocacy in several ways, it may be that, during IEP meetings, youth do not engage in self-advocacy because they know their families will advocate in the meetings.

Research is also needed to more closely examine the role of educators in relation to self-advocacy. Most intervention studies to improve self-advocacy among students with IDD rely on school staff as the interventionists (Roberts et al., 2016). Further, self-advocates and families want self-advocacy to be taught in schools and want educators to support youth to take more active roles in their IEP meetings (Roberts et al., 2016; Sanderson & Rojas, 2023). Our finding reinforces the importance of school staff behavior which can positively or negatively impact self-advocacy. This finding suggests that interventions which involve training school personnel to support self-advocacy may be worthwhile.

Third, participants reported very little involvement in civic engagement, and those who did were the oldest in the sample. This finding may complement prior research finding that youth with IDD often do not receive instruction about civic engagement (Agran & Hughes, 2013). Interestingly, while youth reported not contacting their lawmakers, they did have suggestions for systemic changes. Thus, the will to impact broader change was present but the opportunity to conduct civic engagement was not. Future research should identify ways to promote civic engagement among transition-aged youth with IDD.

Limitations

As in all studies, there are limitations to be considered in this study. A primary limitation relates to the sample. All youth in this study agreed to participate in a civic engagement program, which may have indicated more interest or experience in civic engagement or self-advocacy, as well as the ability to attend the program, compared to other youth with IDD. While there were few explicit inclusionary criteria, it is possible that youth without spoken language declined to participate because of the focus group aspect of the project. Further, participants only reflected a few states. Given the variability in special education across states, this study may have limited geographic transferability. Also, there are no additional data describing the support needs of the youth participants. Additionally, this study was cross-sectional. It is possible that there are changes in self-advocacy and civic engagement over time. Indeed, this study suggests that older youth with IDD were more likely to conduct civic engagement; thus, more research is needed to understand how advocacy and engagement change over the educational lifespan of the student.

Future Research

Research is needed to identify and test interventions to improve civic engagement among youth with IDD. Given that there is interest among students with IDD and there are ideas to change special education, there should also be a forum wherein youth can voice their concerns to lawmakers. At present, there is limited intervention research examining the effectiveness of civic engagement programs among youth with IDD (e.g., Bartlett & Schugurensky, 2023). Further, most of that research was not co-designed with individuals with IDD. To center individuals with IDD, researchers may consider using a participatory action research project to include individuals with IDD in creating an intervention to support civic engagement among youth with IDD.

More research with youth with IDD is also needed to better understand their self-advocacy experiences. For example, given that self-advocacy seems to change over time, it would be helpful for research to include multiple datapoints. Other data sources would also be helpful. In addition to interviews, it may be worthwhile for research to include diaries of how the individual with IDD conducts self-advocacy in real-time. Daily diary entries have been feasible and useful among individuals with IDD (Hulsmans et al., 2023). A multi-pronged research approach to understanding self-advocacy may yield a richer understanding of the phenomenon.

Implications

There are several implications for practice. Based on this study and other research (Roberts et al., 2016; Sanderson & Rojas, 2023), youth with disabilities can develop and practice self-advocacy skills at school. This study further suggests that youth often attend their IEP meetings but do not advocate there; thus, practitioners should consider ways to prepare youth to advocate in the context of IEP meetings. Relatedly, because self-advocacy may seem intimidating at first, youth may need encouragement to advocate. Practitioners may consider targeting certain aspects of self-advocacy. Utilizing the conceptual framework of self-advocacy developed by Test and colleagues (2005) may be helpful to target specific self-advocacy skills. For example, based on their advocacy at school, participants in this study demonstrated Knowledge of Self (e.g., awareness of their strengths, accommodation needs) and Communication (e.g., assertiveness, negotiation). However, with their limited participation in IEP meetings and civic engagement, they did not demonstrate as much Knowledge of Rights (e.g., educational rights, knowledge of resources, steps to advocate for change) or Leadership (e.g., cause advocacy, political action). Practitioners may consider targeting these latter areas with their students. Specifically, they may consider writing IEP and/or transition goals about knowledge of rights and/or leadership. In addition to goals, practitioners may consider referring youth to state-specific or national resources to encourage self-advocacy. For example, there may be a Partners in Policymaking course in their state wherein youth can learn self-advocacy and systemic advocacy skills. At the national level, practitioners may refer youth to Self-Advocates Becoming Empowered (SABE), the national self-advocacy organization.

With respect to improving opportunities for meaningful participation in IEP meetings, school professionals should use strengths-based (versus deficit-focused) language and approaches especially during IEP meetings wherein self-advocacy is low. At the beginning of the IEP meeting, school professionals can highlight student strengths, interests, and progress. IEP meetings should be simplified and structured to maximize student participation (Sanderson & Rojas, 2023), such as by preparing them to address specific topics during the meeting and supporting their engagement during the entire meeting not just the beginning or one part. By considering the ways in which school professionals can promote a positive culture during IEP meetings, self-advocacy may be more common.

With respect to implications for policy, policymakers may consider trying to increase ways for youth to participate in civic engagement. In the past IDEA reauthorization, less than 1% of feedback was from youth with disabilities (York, 2005). This study suggests that in the next reauthorization, civic engagement may be similarly low. Policymakers may consider ways to encourage civic engagement from youth with disabilities by offering training, encouragement, and incentives for youth to share their feedback. One way to do this would be to expand contemporary ways in which youth can provide feedback to policymakers. For example, popular social media platforms (e.g., TikTok, Instagram) may be offered as a way for youth to share their thoughts to improve policy.