Opinion: The Special Education System in America is Utterly Broken. And it’s Harming Our Children.
IDEA. FAPE. IEP. FBA. BIP. FERPA. CESA. SLP. DPI. WSPEI… I could go on and on. Are you familiar with any of these acronyms? Unless you’re a Special Education parent, teacher, or other professional, probably not.
When my son qualified for an IEP, I had no idea what IEP meant or what it did. My school district has no special education policies or procedures on their website. Their procedural safeguards have a deep orange background, which discourages reading and printing.
I assumed that the professionals would know what they were doing and offer him any of the services that he needed to be successful in school. I had trust in the system.
Boy, was I ever wrong.
IEP stands for Individualized Education Plan, by the way. According to the Individuals with Disabilities Education Act (IDEA), every student in America has the right to a Free Appropriate Public Education (FAPE). So what’s the issue?
The implementation of said education is completely messed the eff up. Sorry, not sorry, I can’t help but be blunt here.
Now that is certainly not true in every case. There are some wonderful stories out there. And wonderful teachers, of course. But a very large percentage of families who have a child with a disability qualifying for an IEP are going through it, I tell you. Or have gone through it.
My son started Early Childhood when he was 4 years old. The teacher was great. I loved her.
Then came 4K. Again, the teacher seemed great. There were definitely some difficulties, but at the time I felt like the staff was trying their best.
Then came 5K. That was the year I learned that you don’t get what you don’t fight for. My son was moved from the general education classroom to a smaller special education classroom because the general education classroom was overstimulating. They declined to tell me exactly what this move would mean. In hindsight, I would not have agreed had I known.
When he moved to the special education classroom, they were apparently no longer required to give my son a 1:1 person with him 100% of the time in that room. Only in the general ed classroom, and that was definitely not made clear to me. The omission felt like a lie. It was certainly deceitful. What’s worse, is that he needed a 1:1 person with him at all times for safety reasons. Having known my child for two years at that point, they should have known that. Or they did know that… and did it anyway.
My son stopped talking completely. He had selective mutism which is caused by severe anxiety. That lasted about half the school year. He only began talking again because we started him on a medication to help.
His new special education teacher was injured around Thanksgiving, and was gone for much of the rest of the year. There were twenty some odd days that they didn’t even have a substitute teacher. Just paraprofessionals. Like it was a daycare or something. Meanwhile, my son was emotionally dysregulated most days at school. I felt like it was my fault… they made me feel like it was my fault. Even though his behaviors at school differed completely from his behaviors at home. There were many days I had to keep him home from school just because they didn’t have the school staff that was appropriate for him; it would have been negligent to send him. It would have made him sick. He has a medical condition that is exacerbated by stress and anxiety. I didn’t want him to keep having another “rough day”.
I didn’t know then, like I do now. I didn’t know just how bad it was. I found out much later that they were using seclusion or restraint on him multiple times a week. I had no clue. Legally, I should have been told. The school reported ZERO incidents of seclusion or restraint for that school year.
Here is where I also want to educate you about the nervous system. When someone gets upset and goes into fight or flight, they no longer can access their prefrontal cortex, or the “thinking” part of the brain. This is based on research that has been done in neuroscience. (Also, when someone has ADHD, that makes emotional regulation MUCH more difficult!) If you would like to know more, please check out this link on what is called polyvagal theory.
Eventually I hired an advocate, and realized that I needed to educate myself and fight for my son’s needs. In spring of his 5K year I called an IEP meeting and we got him the 1:1 paraprofessional he desperately needed. During that IEP meeting the current district Director of Pupil Services and Special Education at the time told me that they would have to take that paraprofessional from another student who needed it for learning. Because my son needed it for safety. That lit a fire in my heart to advocate for all the children in my son’s school. And I wasn’t going to let them guilt me into not fighting for what my son needed. The last couple months of that school year went well, or better I should say. His special education teacher was back; she was wonderful. His 1:1 paraprofessional was wonderful. He met and exceeded all of his IEP goals. We finished up the school year hopeful of what was to come in first grade.
First grade was this last school year (2023–2024). My son’s first grade general education teacher was awesome. He began with going to both the general education classroom as well as the special education classroom he was in the year prior. We had the same special education teacher. Until we didn’t.
His special education teacher had to leave for medical reasons. The district didn’t tell any of her students’ parents right away. I received a phone call one Friday after they found out the teacher told me earlier that morning in a meeting. I couldn’t believe that they would do that at the time. My son has complex medical needs and there is vitally important information that needs to be shared by the staff that work with him. To think of the serious complications that could have arisen from this makes me feel very angry. They claimed they wanted to wait until they had a plan in place… at least they had a substitute teacher this time.
Eventually, they hired a new special education teacher. She seemed good at first. A lot has happened since then.
We had an IEP meeting to discuss compensatory services for last school year. Compensatory Services are extra services for when the district has not provided FAPE for a sustained amount of time. A Day in Our Shoes has a good article about it.
The Director of Pupil services and Special Education and my advocate spent time arguing during the meeting. Things were tense. The meeting was rushed, and my advocate was fighting for me to be able to give input. After the meeting, I had more time to think things through. What should have been a healthy discussion was not. I found out later from my son’s paraprofessional that the IEP team was told to talk as little as possible during the meeting. I decided to decline said services because cramming more services into my anxious son’s already busy day was a terrible idea. Things were already not working well for him.
Since then, they were rarely able to keep my son emotionally regulated for long at school. Keep in mind, all behavior is communication. My son and the new special education teacher weren’t able to connect well. She didn’t have a lot of experience. My son was in the ER four times this school year for a medical issue that is exacerbated by stress. His nervous system became so sensitive he would go into fight or flight very easily. The district didn’t offer me any good options. They wouldn’t let him have another special education teacher at the school. The only other option they gave me was a virtual school for special needs children, and that was not an appropriate option for him. It was not feasible.
I could no longer sit there and watch my son’s health decline. It wasn’t even just about an education anymore, which he wasn’t even getting. After doing a lot of research we made the decision to homeschool him for the time being.
I could go on and on about my personal experiences. I have found nothing but support from other parents and community members that I have told my story to. This is a wonderful community. My county has a lot of great resources. And we are far from being one of the poorest counties in the state. It’s one of the nicest places to live in the entire world. I have ancestors who immigrated here. My family has a history. Which is another reason I feel the need to advocate wholeheartedly. You don’t know what you don’t know.
Our school district’s motto is “Every Student, Every Day”. This shouldn’t be a “lofty” goal. It’s an equitable one.
There are a lot of great things about our district. But until they actually give the resources that their special education students with IEPs need, I believe that they’re making a mockery of themselves. The fact is that unless a special education parent reads up and becomes an expert in their child’s diagnosis (or diagnoses) as well as special education law and advocacy, their child will get the bare minimum of what they are required to give them. Even if it means the child struggles, or suffers emotionally (or physically as well in my son’s case). A child with unique needs here if left without a lot of parental input will not be able to reach their fullest potential.
It’s like a full time job. What parents have time for yet another full time job? Especially if your child has a disability. Or you have more than one child with a disability!
This is a systemic issue. I can’t count how many parents I have heard of with similar stories. Or how many homeschooling parents who have said that school was “not a good fit” for their child (or children).
Had I not been a strong advocate for my son, he would have continued to suffer. He would not have learned anything at all, because the administration and staff doesn’t have enough training that they know how to teach him. And the powers that be don’t put in the money and effort to try. He would have ended up hospitalized, or possibly dead. You think this sounds like I’m reaching and going too far here… I’m not.
Side note, here is what the US Department of Health and Human Services defines as child abuse and neglect.
I can’t even count how many times they have used seclusion and restraint on my son. This is supposed to be a last resort. They’re supposed to put effective, proactive behavioral interventions in place before it gets that far. My son had an FBA (Functional Behavior Assessment) with a BIP (Behavior Intervention Plan). Although that wasn’t completed until the END of his 5K school year! And it didn’t work. Why did they not hire a BCBA (Board Certified Behavior Analyst)? They had hired an autism consultant instead. My son does not have an autism diagnosis!
To quote a close friend of mine: “The narrative out there is that kids are bad & parents don’t care, not the truth: that education is more cookie cutter & digitized than ever and the things that used to happen to disabled kids in institutions still happen, they just happen in schools.”
So what can we do? All I can do is advocate. Share these stories. Special Education in our schools needs more funding. The school administration and staff needs more training. We need quality staff and programs. We need “bottom up” discipline where we focus on solving problems instead of “top down” discipline which focuses on modifying the behaviors... like Collaborative Problem Solving by Ross Greene. Kids do well when they can. We need problem solving that is proactive, not reactive.
We also need more accountability by the DPI (Department of Public Instruction). Better reporting to them about seclusion and restraint… and better reporting in general. Schools need to be reporting with fidelity.
For more information, please check out the Alliance Against Seclusion and Restraint.
Until we can say that our disabled students have every opportunity that a nondisabled, neurotypical student has, we can’t proclaim that we value every student, every day. I am far from the only parent who has had serious problems with our schools. It’s a big part of the reason that us special education parents need support. When you have a child, your heart grows. It makes you stronger. You can handle it. But when the systems in place are not operating like they should, it’s a big problem. That’s when the Mama Bear comes out. Unfortunately, it’s the norm. Like I said, it’s a systemic issue.
Again, you don’t know what you don’t know.
Most people seem to think that people with disabilities are taken care of. Unfortunately, that’s often not the case.
This is my son’s story. He can’t even look at his old school anymore without getting anxious. He is in therapy and we are discussing PTSD. He is now getting healthier, happier, and he is healing, but it will take some time. And he is finally learning. I apologize for all the acronyms, however I wanted to get my point across. The acronyms are just the tip of the SPED Iceberg!!!
And if your child receives special education:
Take it from someone who has learned the hard way…
Ask questions! Trust your gut. Trust no one.
Be familiar with your child’s skill levels and where they should be at. Read your district’s procedural safeguards and understand your rights. Become an expert on your child, their diagnosis (or diagnoses) and how they learn. Read all of your child’s IEP, become a real part of the IEP team. Request all of your child’s progress monitoring towards their IEP goals and read it. Understand the law (IDEA), your state’s policies and procedures. Learn how to write a state complaint.
Attend your district’s Board of Education Meetings and learn what is going on in your school/district. Record everything (As legally allowed). Research, research, research. Always leave a paper trail. Follow up everything with an email. Last but not least, FIND YOUR PEOPLE! Connect with other special needs families. Talk to other parents. They will be your biggest resource and support system. You need to avoid the isolation that being a special needs parent can bring.
I highly recommend this book for all parents with a child in Special Education: Wrightslaw: From Emotions to Advocacy: The Special Education Survival Guide
