(***Note to readers: Paragraph 1 and 2 contain information from Carly Fleischmann's book, Carly's voice. If you think this will spoil the book for you, feel free to skip). Below you will find tips for teachers, and lots of other school staff, how to promote self-advocacy and even resources to facilitate self advocacy.)
When Carly Fleischmann was 13, she told her father that she wanted to go to school with her twin sister Taryn. Her father replies "Taryn goes to Hebrew school. She takes Hebrew, French and a full curriculum. It is not the right place for you". Carly was supposed to take an assessment tomorrow to see what level she is at. Carly said "I have taken lots of tests and know what I can and cannot do" which is a common experience of those of us in special education.
Carly's father begged Carly to take the assessment "It will help them come up with a better program for you". Them is the school, not Carly. The school placement should be Carly's decision, not her parents. Carly has in addition criticized her therapy program, such as when her therapists ask her to spell "chips" for a chip or "spell your name" followed by "good have a chip" and then asking her to spell her name again. She said this makes her feel stupid.
Even though Carly made it clear what she wanted, she has no legal standing because under the Canadian law, it is the parents, and not the child who make the decisions. In the United States, she would not have the right to attend her own IEP meeting, which is a meeting about her and her education. Under the Individualswith Disabilities Education Act, a student must be invited to the IEP meeting if transition is being discussed. A transition plan is required for all students who are turning 16 when the IEP is implemented. Districts may set a lower minimum age. Before 16 or if transition is not being discussed, the school is not required to invite the student to the IEP meeting. That is up to the parent.
Section 300.321(b)(1) requires the public agency to invite a child with a disability to attend the child's IEP Team meeting if a purpose of the meeting will be the consideration of the postsecondary goals for the child and the transition services needed to assist the child in reaching those goals, regardless of whether the child has reached the age of majority. However, until the child reaches the age of majority under State law, unless the rights of the parent to act for the child are extinguished or otherwise limited, only the parent has the authority to make educational decisions for the child under Part B of the Act, including whether the child should attend an IEP Team meeting.
The very IEP meeting that is about their education, performance and progress, goals and what they will be doing. Yet the law says it's up to the parents to decide whether to involve the student, instead of an inherent right for the student to be present in a meeting that is about them and affects them. These include my parents, who did not care about my education, who did not care that I had preferences they should advocate for, and other parents who may place their children in placements like the Judge Rotenberg Center.
If you are a teacher, counselor, related service provider or whatever, here are some things you should be doing to encourage self advocacy.
1. Have an ongoing dialogue with the student regarding their disability. “Ongoing dialogue” is not one or two mentions of the disability throughout the year, or a big discussion on the disability a week before the IEP meeting. Ongoing discussion is a discussion on a regular basis about your student’s disability, how it affects them, their IEP goals, their progress, etc. You can start off by saying “You have a learning disability. This means your brain works differently when you do math”. Then explain how their brain works differently. With teens you can be upfront, using the Wikipedia definition. But I am giving advice for younger children. Talk about their goals. “every year we set goals, what we want you to do this year”
2. Involve the student in making the goals. Sit down with the student and say “every year we set goals. This is what we want you to do better at every year. We want you to decide what you need help with” and go from there.
3. Invite and involve the student in the IEP meeting. 14 is the age where you are required to invite the student to the IEP meeting. But it isn’t a guideline. “Every year your parents, teachers, counselors and therapists have a meeting where we discuss how you are doing and how we can do better. We need you to tell us what will help you. Have the student write down what they want to say”
4. Communicate with the student on the regular basis on their progress.
5. Use the “My IEP meeting” and “IEP goal tracker” worksheets to help facilitate student involvement in IEPs.
There are some cases where it's inappropriate to involve a student, such as a student who has severe Reactive Attachment Disorder or it's detrimental to their mental health to be present at the IEP meeting. However, only under those cases should a child be denied involvement, where it is detrimental to their health and safety.
