Last month at the United Leukodystrophy Foundation’s Family Conference, special education teacher Sharon Bergfeld, MASE, LBSI, LBSII, led a break out session on Student with Disability/Schooling Advocacy.
The session provided a road map to help establish positive and effective modes of communication between the parents, students, and school.
Bergfeld explained that she has sat in many meetings with the student, school, and family, that were contentious and where the student was visibly uncomfortable. Bergfeld, like many others who have been in similar situations, wondered: does it have to be this way? How can we make this better for everyone involved?
To establish a better system that allows a student in a special education to thrive, parents, teachers, and other support persons need to actively work toward establishing a positive, reciprocal relationship. While needs vary from one student to the next, and policy varies between different states and school systems, Bergfeld walked the room through general advice to help navigate the different journeys. She qualified that other educators and parents will have different methods and opinions, but these are the strategies that have worked in her experience.
Because this break out session was primarily attended by parents of children with leukodystrophy, this information is largely geared towards helping parents understand what they can do to make the experience more effective.
Individualized Education Program (IEP)
An IEP was defined as “a plan or program developed to ensure that a child who has a disability identified under the law and is attending an elementary or secondary school receives specialized instruction and related services to meet their needs.” This plan is reviewed every year, and re-evaluated every three years. It includes a transition plan and transition goals that outline a strategy to help a student navigate life after high school, whether that means entering the workforce or continuing with school. It also includes a summary of performance, in which the school discusses a student’s strengths and weaknesses, and recommends potential paths to meeting post-high school goals.
An IEP may contain modifications and accommodations. Modifications are actual alterations on learning materials— for example, modified material might use larger font or adjust the language to the appropriate learning level. Accommodations, on the other hand, don’t include any changes on the actual material, but instead add a supply to help make them more accessible for a student. Accommodations may include books on tape or having a reader or note-taker. While both modifications and accommodations are ensured for students who need them through elementary and secondary school, if a student goes on to attend college, they will generally only have access to accommodations.
Transition plans must begin by 16 years old within the US, according to federal law, but some states have policies that require them to begin earlier. Vocational training may be included, to help students learn skills they’ll need in adult life, such as cooking, budgeting, using public transportation, and joining the workforce. These are resources that are legally protected—under federal law, every student is entitled to a free and appropriate education, which may include small settings.
An IEP is designed to meet a student where they are and then go forward. One goal is to integrate students with disabilities into classrooms with non-disabled students as much as possible. Since the world outside of school isn’t a contained environment, it’s beneficial to have students with and without disabilities learn to communicate and interact with each other at a young age. However, at a certain point, which varies student-to-student, a general education classroom can become distracting. Integration is great, but only so long as learning is going on. It’s often best if students have access to other environments as well, to ensure that a student isn’t missing out on other parts of their education.
If a student continues their education after high school, their IEP will not go with them. However, certain aspects of it can. At the college level, a student can expect accommodations, such as a quiet place to take a test. If a student is continuing to college, the family can take the IEP with summary of performance to the college’s access center, and go over what worked for student, and what didn’t (like having a reader or books on tape).
504 Plans
Another piece of terminology to know is the 504 plan. 504 plans are developed to make sure that elementary and secondary students with disabilities receives accommodations to help them succeed and access their education. It outlines an individual student’s accessibility need, and is reviewed and changed annually. However, unlike the IEP, it doesn’t include specialized instruction.
IEP Teams
The IEP comes with an IEP team, which is the group of people who work to support disabled students. The team includes a case manager (a special education teacher), a school counselor, a special education admin, school psychologist and may include a social worker, physical therapist, occupational therapist, speech and language pathologist, and hearing or vision itinerant. Most importantly, the IEP team includes a child and their parents or caregivers. Bergfeld explains that some parents say that they don’t feel like a part of IEP team, when the student and family are actually the most essential part.
“This child is yours,” she says, “You have dreams; you have wishes. We need to know that.”
Each student also has their own likes and dislikes. Sometimes it’s hard for students with disabilities to express them, besides through behavior signals, but parents pick up on them. These likes and dislikes need to be taken into account. The student is, after all, the captain of their education and IEP team.
Bergfeld advises parents to keep a binder, and update it as necessary to keep everything current. She says share it with the case manager, who serves as a point person and can help share it with the other team members.
Building Positive Rapport
Many families find IEP meetings stressful, but the whole team exists to provide support. When the group works together, communicates, and collaborates, trust can be built on both sides.
Effective communication is essential, but it takes some thought. Families and teams need to consider what their favorite mode of communication is—some prefer email or phone, while others need face-to-face discussions. With that said, while texting may be one important aspect of the communication, it’s best to not only speak over text.
One parent at the break out session shared that she likes to pick her son up every day instead of having him take the bus, because it gives her a chance to tell the teacher updates, or explain that her son is tired because he had a hard night. If the school knows what might be affecting a student’s day, then they can accommodate.
It’s important that both sides—parent and school– make efforts to be patient and reasonable with each other. Not only does the teacher you’re speaking to have your child, but they have many other students, who each have their own wants and needs. Teachers also need to understand the many demands that a parent of a child in special education face as well.
With that said, there are certain standards for everyone to keep in mind: it’s best to return emails within 24 hours, call back, and acknowledge a message with a short reply like “I got your message and I’ll get back to you as soon as possible” when it’s not possible to follow up immediately.
There are important questions to ask in the beginning and routinely so that expectations can be set.
Bergfeld asks, “What you can expect from us as a school? What we can expect from you? What do you expect for your child?”
Educate Yourself
For a parent to be equipped to advocate for their child in the school system, they need to learn about what they’re working with. School systems are shaped by both federal laws and policies, which change from one state to the next. Parents who want to educate themselves can visit their state board of education website. They can also check out Facebook groups, support groups, workshops, conference, web resources, where they can engage and ask questions.
Once a family has discovered a resource that looks promising, they can move it into motion by sharing it. Bergfeld spoke of parents who would attend different conferences and then shoot the teacher an email. One parent attended a conference where they found a free resource for the school district, which they brought to the school’s attention. Because they shared this resource, a young person came in and taught things like budgeting and travel training every other Tuesday, with no expense to the school.
One mother in the break out group shared a similar story: her child was a spectator at recess because of his disability. The mother found funding for a swing for him at his school, and at every park and school in their area.
Now, with the internet at our fingertips, there are more resources available than ever. Parents can start by checking their state’s website and disability awareness sites—even if the people they find don’t know everything, they may be able to connect the family with someone who can help.
Bergfeld pointed out that sometimes, especially in smaller school districts with smaller administration teams, the person making decisions in a school might not have ever been a special education teacher. Informed and active parents can play a big role shaping what the school is aware of.
The Meeting
Next, Bergfeld discussed the IEP meetings. It’s easy to feel intimidated at these meetings, so it’s important to come in prepared. Preparation can include communicating in advance and writing down questions and concerns ahead of time. While at the meeting, parents are encouraged to ask questions, voice concerns, and suggest solutions.
While there are many people who play different roles, Bergfeld advises that parents keep track of who each person is and how they each provide support.
“This is your child,” Bergfeld emphasized again. “It’s your right to know who the people working with them are, since they will have an impact on them, positive or negative.”
Families may also be thrown off by the many different acronyms floating around the special education world. If a parent doesn’t understand an abbreviation, it’s best to just ask for a quick explanation.
The meetings go best when everyone focuses energy in a positive direction, works towards solving problems together, and focuses on what’s most important: the student’s education and needs.
“It’s not fair to want to get in and get out,” said Bergfeld.
“Be a problem solver—maybe there’s a concern on how the teacher delivers instruction to your child, and you do something else at home. Voice your concern, but offer your solution to the table for consideration too.”
Bergfeld also encourages other teachers to present the situation in a positive light. When a teacher starts with the negatives, all the families hear is, “They’re failing English,” and so on. Instead, starting with the positives can lead to a more productive meeting.
Follow Up
After the meeting, it’s essential that the progress is ensured through follow up communication and inquiries on how the student is doing. If any questions or matters of clarification arise afterwards, they should be asked and discussed.
Bergfeld cautioned that parents are often afraid to hold the team accountable. If the team members said they would do something with a student, they should be doing that. If not, they should have a very valid reason. On the flip side of that, it’s important that parents are accountable as well—if a parent says they’ll send a name of someone, they should follow through with that task.
Everyone benefits when both the school and the family try to understand where the other side is coming from. Although it may sound intuitive, it’s also important to remember to keep an open mind. Instead of asking “Can they do this? Can they do that?,” the team can take an approach that sounds more like, “I don’t know if they’ve ever been expected to do that in a Walmart before. We don’t know what the student will do or not do until they are put into the position to demonstrate their abilities. ” With positive communication and openness to different strategies, new possibilities can open up for the student.
To learn more, here are some great resources:
Wrightslaw www.wrightslaw.com
- Information about special education law, advocacy
Council for Exceptional Children: www.cec,sped.org
- Information about disabilities, legislation, special education
The ARC: www.thearc.org
- An advocacy group that promotes and protects the rights of people with developmental
disabilities
Your state’s Board of Education website
Local groups within your community, school, or local government.
