Disrupting the Concept of Disability:  Working with Stakeholders to Build Self-Advocacy Skills in Students with Disabilities

Abstract

Students with disabilities are often unprepared for the transition from high school to post-secondary education and training.  Service coordinators at the higher education level are concerned with students’ understanding of their strengths and weaknesses entering post-secondary education. As a result of under-preparedness and less inclusive practices, many students with disabilities have long felt like outsiders within their school communities.  As institutional and cultural practices were examined, the West Geauga Local School District decided to disrupt the concept of disability by engaging stakeholders in the development of student self-advocacy skills.  Supported by a local grant, a multi-year study centered upon the development of student self-advocacy skills through inclusive practices and data-driven decision-making has been developed; the 2021-2022 school year marks the implementation of the first phase of the study. This paper identifies the need for, development of, and the realities of implementing the project and may serve as a model for other districts.

The Need for Disruption

The concept of disability in America has evolved since Brown v. Board of Education (1954). It determined that segregation, based on race, violated equal educational opportunity. Sixty-eight years after the Brown v. Board of Education decision, school districts are examining and expanding their inclusive and equitable educational practices.  

The continuation of reflection and the need for change in our specific district came after the parent of a recent graduate voiced their concerns.  They talked about how their child felt isolated, misunderstood, and mistreated by some peers and adults within the school community. Informal conversations with faculty members of local colleges took place about their perceptions of the preparedness of students who had received special education services in high school.  What came across loud and clear from these conversations with stakeholders was that students with disabilities often feel isolated and might be under-prepared for the transition from high school to post-secondary education and training. 

The Individualized Education Program (IEP) contains three distinct transition areas to prepare students for life after high school.  Aside from postsecondary transition needs, this gave us pause to look at the other two components of competitive integrated employment and independent living. Professional reflection resulted in a review of current practices.  We decided now is the time to disrupt the concept of disability within our community and empower students.

Diana Prince, A.K.A. Wonder Woman, stated, “Now I know that only love can truly save the world. So I stay, I fight, and I give for the world I know can be” (Jenkins, 2017).

We aren’t superheroes, but because we love what we do as professionals, we stay, fight for, and give of ourselves for our students. Our school district has chosen to be an agent of change and join hands with community stakeholders to expand inclusive practices that focus on disrupting the concept of disabilities and the development of student self-advocacy skills as the focus of a multi-year transition project.

The Project Development

The West Geauga Local School District is a rural residential suburb of Cleveland located in Northeast Ohio, educating approximately 2,200 students.  Approximately 313 students are receiving special education services across the 13 disability categories and the continuum of services (West Geauga Local School District, 2021a, 2021b).

We began to examine the institutional and cultural practices related to the concept of disability and its effect on students’ lives.  Research practices were poured over and incorporated into the project. With a grant from the State Support Team Region 4, we were on our way to planning and preparing for implementation beginning in the 2021-2022 school year.

The components of the project were developed, including measures to gain stakeholder input through surveys and discussion groups, a timeline for implementation, and a way to monitor progress.  Stakeholder surveys were adapted and created from past research studies (Baker, et al., 2012; Higgins, E., et al., 2002; McLeskey & Waldron, 2000) and informal conversations with parents based on their student’s school experiences.

An important component of gaining stakeholder input is the stakeholder discussion group. The purpose of the continuing group is to bring stakeholders together to identify strengths and growth areas of the district regarding disrupting the concept of disability, how to engage families, and developing student self-advocacy skills.  Community stakeholder participants will include parents of students with disabilities, community agency representatives serving students with disabilities, students with disabilities, general education teachers, intervention specialists, building administrators, community business owners, and members of institutions of higher education.  The data collected will be used to make data-informed recommendations for improvement in district practices and sustain stakeholder involvement.

As part of developing a culture of inclusivity, building administrators and central office personnel are participating in a two-year professional development cohort sponsored by the Ohio Leadership for Inclusion, Implementation, & Instructional Improvement (OLi4). The focus of this cohort is on “shared leadership for the full implementation of inclusive instructional practices that improve results for all children, including those who have disabilities and other learning difficulties” (Ohio Leadership for Inclusion, Implementation, and Instructional Improvement, 2021, para. 1).  This cohort began at the beginning of the 2020-2021 school year.

Student-lead Individualized Education Program (IEP) meetings are one way to help develop self-advocacy skills in students with disabilities (Learn with Two Rivers Charter School; n.d.). We understand that the transition to student-led IEP meetings is the keystone behind all that we have planned in this project, as this has the most direct effect on building student self-advocacy skills. Attending an IEP meeting is a big step for some students and is a starting point for leading their annual review IEP meeting.  Having students identify and communicate to others what they need to work on, setting their own goals, and tracking their progress on their goals strengthens self-advocacy skills. Students need self-advocacy skills while they are still in school and for life after high school. Incorporated into the plan is a continuum of leadership participation for student-led IEP meetings developed by Ellison et al. (2020) as a guideline for implementation (see Table 1). 

Table 1

Level	Characteristics
Level 1	Introduce self and attendees at the annual IEP meeting. Review meeting agenda as led by the intervention specialist.Share results of assessments and education and career exploration exercises with IEP team members. Discuss academic progress, strengths, and needs for growth (could come in the form of a multimedia presentation). Begin building transition portfolio with special educator assistance through compiling all IEP meeting materials.
Level II	Create letters of invitation to community agencies relevant to transition goals. Review meeting agenda before the meeting with the intervention specialist introduce self and attendees at annual IEP meeting. Discuss academic progress and strengths and needs for growth (could come in the form of a multimedia presentation). Discuss experience with disability and any challenges and/or needs it presents. Share proposed transition and IEP goals. Participate in conversation amongst attendees. Write thank-you notes/emails to attendees following the meeting. Continue to build transition portfolio with special educator assistance as needed.
Level III	Create letters of invitation to community agencies relevant to transition goals. Pre-planning of meeting agenda with facilitation by intervention specialist Introduce self and attendees at the annual IEP meeting. Discuss academic progress as well as strengths and needs for growth (could come in the form of a multi-media presentation). Discuss experience with disability and any challenges and needs it presents. Share proposed transition and IEP goals as well as planned data collection and assessment activities.Facilitate/lead conversation amongst attendees. Write thank-you notes/emails to attendees following the meeting. Continue to build a transition portfolio with minimal assistance.
Level IV	Pre-planning of meeting agenda independently with a final check by an intervention specialist. Create letters of invitation to community agencies relevant to transition goals. Introduce self and attendees at the annual IEP meeting. Discuss academic progress as well as strengths and needs for growth (could come in the form of a multi-media presentation). Discuss experience with disability and any challenges and needs it presents. Share proposed transition and IEP goals as well as planned data collection and assessment activities. Presents current data regarding goal progress (transition and academic/behavioral goals).Facilitate/lead conversation amongst attendees. Write thank-you notes/emails to attendees following the meeting. Continue to build a transition portfolio independently with a final check by the intervention specialist

Supporting stakeholder needs is also essential. As one way to address some of those identified needs, the West Geauga School District started Parent University, an educational resource created to address families’ needs and provide information to stakeholders on topics of interest during the 2020-2021 school year. Based on informal parent input, the following might be included, pending the results from the parent survey:

• Abilities vs. Disabilities
• Building student self-advocacy skills
• The importance of student-led annual review IEP meetings

Other aspects of the project include ongoing district professional development and strengthening the district’s transition services and activities for transition-age students receiving special education services.

The Realities

As we know, everything may look good on paper, but the implementation doesn’t always follow the best-laid plans.  The ramifications of COVID-19 have impacted the starting timeline.  As cases rise and fall and ever-changing quarantine recommendations are in place, those involved in the project’s rollout have had to prioritize building safety measures and the uninterrupted daily education of students in our charge, resulting in a delayed start to some aspects of the project.

COVID-19 restrictions and reservations slowed the process of assembling the stakeholder discussion group.  We would like to meet in person, however, with the rise of the COVID-19 variants, that is tentative.

Identifying and obtaining speakers for Parent University has also been affected.  Many speakers of interest have halted speaking in person.  We found obtaining speakers at the national level is cost-prohibitive, with many speaker fees in the thousands of dollars plus transportation and hotel costs.

One other aspect of the project that we need to reexamine in our procedures is involving students in their IEP meetings.  Much like outcomes in the studies we reviewed, many students at the secondary level don’t want anyone to know that they are receiving special education services.  This just supports why we need to disrupt the concept of disability.  We decided to begin with the intervention specialists inviting students to the meeting and speaking with them about the importance of attending their meetings and then introduce the Level I items in Table 1.

Conclusion

Although there have been some delays in the timeline, the work outlined in our project is very important and continues.  Using research-based methods to develop the project was the correct approach.  We had planned out all of the needed components we could identify.  What we didn’t account for was the continuation of the disruption from the effects of COVID-19 on the ancillary factors (e.g., speaker availability, reluctance of some participants to meet in person, and the ongoing disruption from COVID-19 quarantine measures)

In conclusion, we haven’t lost our focus and will continue to be change agents so that students are less likely to feel isolated and are able to have the skills necessary to speak up for themselves in life after high school. We are in the process of realigning our timeline for the remainder of the 2021-2022 school year, as well as our timeline for sustainability from this point forward (see Table 2).

Table 2

2021-2022
March	Parent, Student, and Teacher Questionnaires reviewed by team
	Email to parents of students in grades 7-12 sent out about the questionnaire
	Emails sent out to students (grades 7-12), parents (of students grades 7-12), and teachers (WG teacher rosters) with questionnaire links
	Transition Action Committee members identified (parents, students, community members, teachers by team
	Invitations sent out to potential Transition Action Team members
	Schedule initial Zoom for West Geauga stakeholder action team meeting
April	Parent University speakers finalized and scheduled
West Geauga stakeholder action team meeting
May	Parent University
	Aligning business community opportunities for internships
	West Geauga stakeholder action team meeting
June	Parent University
	Aligning business community opportunities for internships
	West Geauga stakeholder action team meeting

The delays due to the pandemic have revealed a bright side amidst all of the fluidity.  Professional development opportunities, which weren’t available at the inception of the project, have enabled us to widen the vision of student self-advocacy skills.  There is now a plan to create a lab where students can build independent living self-care skills (e.g., learning how to do the laundry).  Opportunities for networking with community stakeholder business owners are developing.  A Transition 101 class has been adopted and scheduled for grades 9-12 in the 2022-2023 school year, where students will learn about self-advocacy, transition planning, and social-emotional topics.

We understand that this entire process is fluid as we move forward.  Changing perceptions and practices aren’t always easy, however, it is very necessary.  We hope to inspire other districts to examine their inclusive practices and disrupt the meaning of disability along with us. 

References

Brown v. Board of Education of Topeka, Kansas, 347 U.S. 483 (1954).

Baker, K. Q., Boland, K., & Nowik, C. M. (2012). A campus survey of faculty and student perceptions of persons with disabilities.  Journal of Postsecondary Education and Disability, 25(4), 309 – 329. https://files.eric.ed.gov/fulltext/EJ1002143.pdf

Ellison, M. L., Huckabee, S., Golden, L., & Biebel, K. (2020). Supporting student-led transition planning for students with emotional disturbance.  University of Massachusetts Medical School, Department of Psychiatry, Implementation Science and Practice Advances Research Center (iSPARC), Transitions to Adulthood Center for Research: Worcester, MA. https://www.umassmed.edu/globalassets/transitionsrtc/ourmodels/test/products/guides/student-led-support_nov2020.pdf

Higgins, E., Raskind, M., Goldberg, R., & Herman, K. (2002). Stages of acceptance of a learning disability: the impact of labeling. Learning Disability Quarterly, 25(1), 3-18. https://www.docherman.com/Docherman%20pages/PDF%20files/LDQ%20Winter%202002-Labeling%20Article.pdf

Jenkins, P. (Director). (2017). Wonder Woman [Film].  D.C. Films.

Learn with Two Rivers Charter School. (n.d.).  Student-led IEP deep dive [Blog].  https://www.learnwithtworivers.org/deep-dive—student-led-ieps.html

McLeskey, J., & Waldron, N. L. (2000). Inclusive schools in action: Making differences ordinary. Alexandria, Va.: Association for Supervision and Curriculum Development.

Ohio Leadership for Inclusion, Implementation, and Instructional Improvement. (2021).  OLi⁴  Purposes and priorities:  Overview.  https://www.oli-4.org/about-oli4/purpose-priorities

West Geauga Local Schools. (2021a).  District: About us: West Geauga Local Schools: The community. West Geauga Local Schools. https://www.westg.org/District.aspx

West Geauga Local Schools. (2021b).  Master Lists [Database].