Jennifer Bolander is a special education advocate and owner of Education Advocacy Services LLC, an independent advocacy business based on the west side of Cleveland. She has written advocacy articles for “The Gathered View” (national newsletter of The Prader-Willi Syndrome Association (USA), and “Support Matters” (newsletter for Rare Support, a newly-formed non-profit providing resources and support for the rare disease community). Ms. Bolander has completed advocacy training through Wrightslaw, the Council of Parent Advocates and Attorneys, and the Institute for Special Education Advocacy at William & Mary College of Law.
When a young child is diagnosed with a disease or syndrome which affects his/her education to the extent that they are eligible for an IEP, or they receive accommodations through a formal 504 plan, their path through their school years is helped along by a team of people: their parent(s), therapists, teachers, the school psychologist, and possibly members of their private medical team. These adults are advocating for them, on a regular basis, regarding their particular needs in the educational or medical setting. As a result, it is often the case that they don’t (or aren’t always given the opportunity to) advocate for themselves on a regular basis. However, there will come a point when that child has finished with their education years with their school district, and will then need to know how to advocate for themselves.
Self-advocacy is not an instinctive skill – it has to be taught, explained, and practiced in various settings. Teaching self-advocacy skills must start long before the child is “on their own” at whatever age/level, because advocating for oneself effectively takes practice. While the ultimate self-advocacy responsibility falls on the individual, as they will be the person communicating their needs to college staff and/or workplace management, there are nevertheless multiple parties involved in teaching self-advocacy skills to young adults: the student, their parent(s), school staff personnel, and employers.
By the time they are young adults, graduating high school and/or transitioning out of the school-district “cocoon”, the student should be relatively comfortable with advocating for their own needs, so that they can be as independent as is safely possible. Specifically, this means that the individual
Should have as comprehensive an understanding of their disability as possible.
Should have a comprehensive understanding of the specific challenges they experience as a result of their disability.
Should know which disability-based challenges affect specific settings (i.e., some challenges will happen more in one setting than another, whereas other challenges may not be an issue).
Should have an understanding of 2-3 specific sources of support – specific professionals in each setting to turn to for direction and help (job coach, CCBDD support person, parent, manager).
Should have had a great deal of practice in using appropriate “advocacy language” to verbalize their specific issue as well as specific solutions to that issue.
If appropriate from a maturity/cognitive ability perspective, the student should also be taught that as a disabled individual, they have certain automatic protections through Section 504 of the Rehabilitation Act, and the Americans with Disabilities Act.
It is imperative that parents teach and encourage self-advocacy skills with their child starting in their child’s pre-teen years (or earlier). This is necessary not only because it will take time and practice for their child to thoroughly learn good self-advocacy skills, but also so that their child can support their own safety and privacy needs as they are in social situations throughout high school and beyond. It is crucial that young students with specific environmental, social, and psychological needs, become well-versed in what those specific needs are and how best to verbalize those needs in a polite but firm way.
Parents will need to get out of the habit of talking to school staff for their student in every single situation. It often happens that an upsetting situation will occur at school, and the student will come home and tell their parent about it. The parent then calls up to the school (or emails) and discusses the situation with the teacher. While in some cases this is fine, this potentially takes a self-advocacy opportunity away from their child – and may not ultimately solve the situation as the parent was not present during that situation anyway. The parent, the student, and the student’s primary school staff person need to discuss and agree on a set of actions the student will take while still at school, to work through upsetting situations and advocate for themselves. The student needs to be empowered to work through their problems and seek out assistance from relevant staff who will in turn support that student’s self-advocacy efforts.
Parents will need to educate themselves about legal guardianship. Once their child turns 18, that child (regardless of cognitive level, mental ability, physical ability to care for themselves) is considered a legal adult. In that situation, a parent’s rights to advocate for their child’s needs in any setting may be questioned. While self-advocacy is a crucial skill for every individual with any disability, it is still important that the topic of guardianship be fully explored and discussed so that parents and child have a solid plan.
School Personnel: Teachers, Therapists, Counselors, School Psychologists
An important aspect of encouraging a student’s self-advocacy efforts is that the school personnel who interact regularly with that student must be informed about, and be supportive of, that student’s overall self-advocacy goal. It is a learning process to know which issues are truly a problem, and the right ways and times to talk to someone about that issue – thus, school personnel should take each situation seriously and work through it with the student. It does not benefit the student at all to have their efforts disregarded and not taken seriously, after they’ve been told that they need to practice self-advocacy.
The student’s self-advocacy plan should be communicated to all relevant school personnel, so that staff members respond appropriately when the student is using their advocacy skills. This effort to keep everyone informed necessitates that the self-advocacy “action pathway” be written down, so that both the student and the staff are following the same plan.
Should the student choose to pursue further education at a college or university, both the student and his/her parents should have multiple, comprehensive discussions with the guidance/transition counselor about the following important detail: The IEP does not follow the student into higher education; instead, the student’s needs are accommodated through a formal 504 plan. It is crucial that the student and their parents understand how a 504 plan helps disabled students function and learn in a higher-education setting. The Counselor must also teach the student how to contact the Disability Services office on the campus of their chosen school; the student will need that information as a source of assistance, especially because the student will have multiple professors who will need to be informed each semester about the student’s required accommodations. Part of being an effective self-advocate is knowing how to find the appropriate help!
Individuals with disabilities have certain protections in the work setting as well, specifically through the Americans with Disabilities Act of 1990. As students with disabilities transition out of school-district services and into work life, they will generally be supervised to varying degrees by a job coach, who would ensure that the individual is treated fairly and has appropriate accommodations in the work environment. However, if questions arise, a good resource is Disability Rights Ohio, a nonprofit protection-and-advocacy agency: http://www.disabilityrightsohio.org/programs.
Individuals with disabilities must have a self-advocacy action pathway for the workplace, just as they had in the school setting. They will need to learn what their specific needs are in that workplace (more time to process directions, written task lists, lots of encouragement, a consistent plan of 1-2 people to whom they can go for help), and to whom they should go when those needs are not being met or something upsetting has happened.
However, even with the help of a job coach, and local/state agencies specializing in disability rights, it is still imperative that individuals with disabilities are taught from a young age about their daily challenges and the supports they need to succeed.
The ability to effectively and appropriately advocate for oneself is a crucial, life-long skill which needs to be taught, learned, practiced and supported. The learning process involves not only the individual with disabilities, but also their support team – their parents, IEP/504 team members, school guidance counselors, staff from local agencies participating in his/her transition process, Disability Services staff at a college/university. It is my sincere hope that this article has helped readers on their or their child’s path to effective self-advocacy!