I am white.
I have a master’s degree.
I am now firmly upper-middle class.
I’m lucky enough to be able to stay home and raise my kids.
I spend at least a small percentage of each day reading the latest research or news on disability rights, advocacy, and inclusion. I blog about it here.
I spend a lot of money on countless conferences and intensive advocacy trainings.
I’ve used all of this privilege to leverage a decent education for my son with Down syndrome. Unlike 83% of his peers with Intellectual Disabilities, he is fully included in general education with proper supports. I’m the self-proclaimed CEO of his Individualized Education Plan (IEP), and I would make CEO pay if someone paid out for solid IEPs.
Read Related Post: Clearing the Way for Systems Change in 2020
You’d think with all this privilege that my son would be set. That he would be guaranteed an appropriate education in the Least Restrictive Environment (LRE) with proper supports for the rest of his educational career.
But that’s the funny thing about the Individuals with Disabilities Education Act (IDEA); the federal law that opened the school house doors for people like my son who used to be institutionalized, pushed away, othered. This tremendously revolutionary law is not.
Read Related Post: 7 New Research Studies to Win the Fight for Inclusion
Yes, it gives parents the right to symbolically “bear arms:” we have supposed equity at the IEP table and due process protections. But then there’s that pesky “I” in IEP. If advocating for my son and other families has taught me anything it’s this: A lot of us are holding up our pitchforks and screaming, but we’re doing it ALL BY OURSELVES in a vacuum. Unlike the 2nd Amendment, IDEA doesn’t allow us to create the IEP version of a “well-formed militia.” It’s you against a cadre of school officials who’ve been entrenched in the institutionalized promotion of ability-based segregation that goes against all best practices and research.
Some parents buy into this system. Either because of innocent cultural deference or because of intentional ableism. I really like to believe most are in the former category. These parents believe they shouldn’t questioned professionals who are tasked with protecting and educating their child under the law. These types of parents may also have few of the privileges that help me understand and navigate the complicated special education system. Either way, both groups of parents don’t question IEP team staff . The ableist parents truly believe their child is better off segregated in a self-contained class or special school, even though all the research says they aren’t. The vast majority of parents are never really giving an option to start their child in the least restrictive environment with appropriate supports.
The segregated class becomes the best choice, because it’s the only choice.
Parents are given significant power under IDEA to be an equal decision maker for their child. The key phrase is “their child.” The emphasis on the individual at first glance seems powerful. Who doesn’t want a customized document for their child?
Just the other day a parent posted on my Facebook page: “It totally depends on the ‘individual’ needs of the student. As it should be.” There’s that word again: individual. Schools use the “I” in IEP to segregate: your child will receive a more “individualized” education in this “special” classroom is the common mantra. The problem is individualization undermines our community’s broader push for including ALL students with disabilities NO MATTER WHAT! The “I” in IEP is being used to divide and conquer our community, and segregate our children.
No student! I mean ABSOLUTELY NO STUDENT has individual needs that require a segregated setting! Separate is NEVER equal, and framing self-contained classes and special schools as “individualized” so somehow better does such a disservice to an entire class of humans.
Furthermore, it’s that pesky “I” again that prevents us from banning together. Enforcement of IDEA is handled on an “individualized” basis. If you have the privilege to take your school to court, you’re going alone. And too many due process decisions related to IDEA end right at that individual child, without a broader social change for ALL students with disabilities.
Our family makes up a tiny percentage of privileged, systems-changers. And still, I have no idea if my son will be appropriately educated next year in his least restrictive environment with supports. Think about that for a moment. Not even the most privileged amongst us are guaranteed what the law requires.
My district may get a new special education director, or he may get a general education teacher who doesn’t want him in class, or we may have to move. Countless factors outside my son’s solid IEP can drive us towards the brink of segregation. And the “I” in IEP will be there to push us over the edge.
Love it! ššš! Speak it!
My experience is still limited, but from what Iāve seen I think a big barrier to inclusion is mindset of what a ādisabledā person can accomplish and the expectations that go along with that.* It doesnāt matter what protections IDEA guarantees, social expectations are still dismally low, and that is hard to overcome. It is exceptionally difficult when the school system is entrenched in this way of thinking – hard to go against and even challenge. Many, many parents are busy and donāt have the time, resources, or help to go against the status-quo. So, if parents can guarantee that their child is safe and happy then they count it a win and donāt worry too much more. I appreciate your perspective on this and how you talked about it in your article. When my kiddo was about 7/8months old I had a great convo with some parents who label it āthe prom king/queenā problem. Their daughter is now a young adult and they found that once she hit middle school the idea of inclusion vanished – it was because everyoneās expectations were so abysmally low. It is as if everyone expected their daughter with Down syndrome to live her entire life with the experiences and education of a middle-schooler. At the high school level they found that administrators and most parents felt inclusion equaled hallway high-fives, absence of bullying, and the possibility of being prom king/queen. (Can we blame parents though? Their kid was safe and happy. That is HUGE for us as parents). However, these parents I talked with had a big problem with this mindset – their daughter was never challenged or expected to grow because the expectations for what she was capable of were nonexistent. They grew weary of fighting the mindset within the schools and have created a school for their own, specifically to address the issue of continuing education, growth, independence, and self-development specifically for young adults with Down syndrome. They have been role-models for my husband and I when it comes to raising a child with Down syndrome. I frequently reach out to them for advice and wisdom that comes with their years of experience.
So, how do we dismantle this way of thinking? (As a side note, I love how Chris from āSpecial Books for Special Kidsā touches in this issue in some of his longer informational videos, heās perspective has really informed my way of thinking). A big thing is to keep advocating, keep pressing, keep talking to others. Thankfully, the law is on our side and with time society and culture will change. It has already so much, and I am grateful for that. My kid has Down syndrome tell people that there has never been a more amazing time on earth to be born with DS than today. The advancements are astounding and will continue to grow. It believe we are on the cusp of society changing its thinking towards people with disabilities. I feel hopeful because more typically developing peers are being educated along side non-typically developing kids. They will take their friendships and experiences with them into their higher education, jobs, etc and I think it will be a great influence for good for future generations. I imagine a world where the school principals and CEOs and coaches and managers all grew up going to K-12 (and beyond) along side friends with physical or intellectual disabilities. That can only be an influence for good.
*(I think this assumption is also symptom of a wider problem that people have to āproveā their value and worth, rather than it being intrinsic and somethings all of us a try because of our humanity. Thankfully we have come a long way in regards to this, but there is still a mountain to climb).
I love your perspective. This is so true in my sons life and I saw it way early on. Now at 14 I see and had to prove my son was the schools lesson. I read and studied all out there regarding everything. Thankfully in the world Iāve created for my son Iāve given him no option to back down. I donāt know how I did it or figured out that expectations were everything. Now my sons three mainstream classes aim to make his history and science larger print to allow him to always complete his homework. The school would argue they worked too hard to help my son, he will struggle more than they ever would if I donāt push him and me. He is in 8th grade and has always had homework done and recently memorized the preamble in three days. This from a teen three years behind? He lives with autism somewhere way behind him. His name is Philip.
I filed due process after I counter filed against their due process. I was fortunate to have my sons advocate do all the paperwork for filing. After my due process filing they had to pay for IEEās. We had it done and the school is dragging on sending a few dates to set a meeting to review the stellar behavioristās report on my son. They have time to schedule PTCās last month but not my sons IEP? Sure individual. When I filed they acted like Iād back down. No. Iām Abe Lincolnās first cousin.
Thank you fir words of truth. As a mother of a 19 year old with Down syndrome and Autism, teacher and a military wife, my son started experiencing āexclusionā in sixth grade after years of advocating different schools in various states because of military moves. I continue to see parents think the schools know whatās best for their child with an IEP and itās frustrating as I realize a parent can do so much more. I am now at home with my son after our last move and now advocate for lack services and supports out in the community for my son and family.
SC is in violation of IDEA from the start. 3k is only offered as a self-contained class. How convenient, so then a child is forced to “earn” placement in gen ed. Why isn’t the full continuum of placement common knowledge? Great article. There’s movement in the Ds community but we have an uphill battle.
Now two years after high school graduation, with a standard diploma, my daughter struggles to find friends on even footing. She has decided college isnāt for her at this point. Our local college only has a glorified transistion program. Her typical high school friends have gone away to college, work, or moved away. She never formed much of a bond with the students who were in separate classes, she is starting SO that many have done for years.
Her inclusive education didnāt prepare her for a segregated world. She could not find a job although she is qualified and more more dedicated than many young adults who are hired only to quickly quit. I arranged for a part time job at our church because Voc rehab was having no success finding her employment after she completed Project Search.
Still depressed, one day she told me she was lonely because she didnāt have a boyfriend. So I contacted the mom of a young man she knew in elementary school. I asked if he would be interested and we arranged their courtship. Although she sees him infrequently, they text, and more importantly, she can now say she has a boyfriend.
What I have seen in her I also saw in my typical kids at this point in their lives. Too many young adults with disabilities are getting stuck at this point and I donāt have any answers…yet! Many go to group homes and other parents want some kind of congregate living. Looks too much like the segregationist grouping I fought during school for me. For now she is content to live at home.
So we are soldiering on, it is an individual path, as it is for every person. Those of us who advocated for inclusion in schools will still be advocating for inclusion in life.
Yes the I in IEP is used against our children. And therefore another generation of teachers are missing out on teaching children with down syndrome in the regular classroom and another generation of students sees students with disabilities as they and them instead of us.
I entirely agree with you. My son is in 8th grade having been included since Kinder despite the fact that at every single Annual IEP the district has offered FAPE of a segregated class in a different campus. I am so tired of the fight.
We cannot create change through the IEP or Due Process system. We have 40 years of proof of that. We have to work together politically to create change at each and every school board. But itās hard work to find allies and persuade busy parents to take action.
I think aggression towards staff/ students, a mindset about what students can learn when you teach to their strengths and use evidence-based methods and public schools competing for funds so they can provide the resources to fit teaching model for everyone are barriers Iāve seen first hand.
From my experience, the biggest barrier to inclusion is parents of typical children who complain about the children with disabilities.
“Why should my child have to go slower because of your child?”
“My child likes a quiet classroom and THAT child makes too much noise. Why should THAT child get to disrupt my child’s education?”
Other parents have said these things both behind my back and to my face. And the school tends to listen to them and not to me.
Or maybe the barrier is that we don’t have a school administration that will stand up for THAT child – or for mine.
I hear you. Maybe even worse is teachers who actively upset progress for inclusion. My sister is an elementary teacher. She adores my son. He is 13. He has autism and is primarily non speaking. He understands language as any 13 year old. In spite of her experience with our family, she has complained about slightly slower academic students pulling the class average down. She absolutely would not advocate for inclusion of special needs, even as someone (distantly) familiar with what that means. I’m not sure there is a solution for inclusion š„ I’d like a little hope in this issue.
This year we went to due process. For Kindergarten. My son is a July baby, and since his typical sister (June baby) struggled with being socially young, I asked about included TK (nope), another year of preK (nope), includes with supports (nope – and painfully insulting offer in dispute resolution that involved 3 different classrooms). We moved him back to the lovely preschool that I now realize we should have never left. I now realize we could have done this from the get go, but we were so trusting that his 2 hour intensive program that took him out of his typical preschool during their āacademic periodā was going to āget him inā to typical Kinder (because they SAID 90% of kids in that program moved on the included programs…turns out all kids with DS in our district end up in that 10%). But all I am looking at is another battle coming up with his triennial. If we āwinā then my work is just starting to make sure teachers are trained and compliant. I actually spoke to our lawyer about class action, and he said as much as that would be possibly a way for there to be more benefit to all and better pressure for change, no one has an appetite for it. If inclusion isnāt what a parent wants, then fine, but it should always be the first thing on the table.!
I think the issue is that people in the education setting find it too expensive and troublesome to accomodate someone with a disability to fit into their mold. What should happen is all spaces including classrooms should be universally designed so that all kiddos can access what is going on there. That way everyone is included from the get go, and the need for accommodations would be minimized or non existent. People would then no longer have the excuse that it was too much bother to accommodate.
UDL! Yes! Imagine if we dismantled special rooms and schools and used all those resources in general education for ALL students.
I believe in the I in IEP. I think it is important to look at the individual child and their individual needs and to plan an individualized program for them to receive their individualized instruction.
Your childās best and most appropriate environment may be the general education setting, but for many students it may not be, so fighting for your child may not necessarily be the same fight that someone else should take for their child. I have seen countless childrenās self esteem rise significantly when they are placed in a classroom where they arenāt always the lowest or the slowest student. Sometimes a self contained class can be a place where they can make good friends with others who struggle in the general ed setting like they do. A place where they donāt feel ādumbā all the time, They can be learning in a smaller setting on things that they can understand. Itās good to look at all of the childās needs, social included. The self contained setting Is not whatās best for everyone, but itās best for some. For me, thatās the importance of the I in IEP. Most often there is an Individualized plan that includes a split balance of being with typical developing peers part of the day and disabled peers the other part. I am betting that your IEP team is looking out for whatās best for your child.
Hi Anne! The title of this post is supposed to be provocative. I also believe in the “I” in IEP. I want every child’s education to be individualized. The point I was trying to make is that often the “I” in IEP is used against parents to segregate children. I can’t tell you how many times I’ve heard IEP teams say “this child will get a more individualized education in this special program.” But really it’s not individualized…it’s a group of students that the team has determined won’t start in general education with supports first as the law requires. They’re never given a chance to try general education with supports. It’s systematic and it’s a problem. It’s also because of the “I” in IEP (IDEA) that parents can’t systematically change the system. It’s set up so that each parent must fight alone. That’s wrong, and completely frustrating for many, many parents that want their children to get grade level curriculum in the general education classroom with individualized supports FIRST.
I am a public school teacher. I also have a 15 year old daughter with an intellectual disability. In second grade it was totally obvious that she wasnāt able to do the same things as the other students. The school and teachers did a good job of making accommodations for her, but she was smart enough to know that she was different and wanted to do the same things as her peers. School became awful for her.
After running more academic testing I was told that she did not qualify for the districts Alternative Curriculum Program (ACP). I couldnāt believe it as she was basically functioning at a four year old ability. I actually called the head of the special education department and pushed to get her into the program. It was the best decision I ever made. She spent half her day with regular education and half her day in a self contained classroom. She just entered high school and hates going to her regular ed classes because there are so many kids and how loud it is. I agree that students should be in the least restrictive environment, but I also feel that there are some benefits for self contained rooms.
As a Special Education Coordinator I 100% agree with you. I believe all children should be included with our general education students for every class everyday. Problem? Funding. These students are forced into the general education setting (inclusion), often with one dual certified teacher and no other supports. This frustrates the dual certified teacher that could have up to have the class having services. The shocking thing to me is that i have to argue with parents about their students being in in classes with their gen ed peers. They firmly believe they should be secluded and fight us for it. As I work in a middle school, I think itās even more important for them to be included at this time, due to the transition process. I also agree that one parent arguing only helps one child. No one fights for the funding changes needed federally or at the state level to get money to support these kids in the gen ed setting. The whole situation is wrong and we should be doing better for our kids
I agree with what you are saying and what the research shows. We must find the least restrictive environment for every child. All children benefit from inclusion.
However, there are 32 other students in the classroom, all whom have individual needs. Teachers are not given adequate support and often are dealing with special needs accompanied with behaviors that interrupt instruction on a constant basis, leaving the education of the classroom compromised. There is no one to advocate for the 32 who are being evacuated to the playground to avoid injury from an autistic child throwing chairs in the classroom. Obviously, this type of placement is not good for anyone! Itās frustrating for teachers who will spend a whole year with this type of interruption in order to provide documentation that the child is not benefiting from total inclusion. The IEP team pops in for their observations (20 minutes here and there) and yet the teacherās opinion and expertise at the IEP table feels minimal.
The teachers I work with welcome students with special needs and bend over backwards to make it work. They can also tell you what supports your child needs to flourish. Unfortunately, teachers do not feel that they can share this with parents because of the backlash of legal issues.
The other very frustrating aspect is that it all comes down to money. Parents with money can hire advocates and push to get what they want in services even when the services may not be needed. The students with IEPās who come from poor families or parents who donāt have the skill set to advocate for their child, are robbed of the time they need from the team because the team is using all their time meeting with advocates, sometimes with students who have minimal special needs. The system is not working and all of us need to start focussing on fixing the system so that ALL children benefit.
I have taught students with special needs for 19 years. This is tough. By the time students reach high school there is so much to do. We are preparing them for the real world while still providing the Common Core. I listen to parents at IEP meetings and see the struggle. Usually beginning to mourn that future of their child. I have had to tell students they would not be able to attend college because the parents wouldnāt. This was a student who was fully included but lacked so many living and working skills. We have to teach the whole child and often times support the family as they looked to the future. I honestly believe IEP team have a hard job in developing a plan for a student and implementing it with fidelity. At the high school level there are students who would clear the classroom daily with the intensity of problem behavior. It is hard!
As a teacher in a general education classroom and a mom of a child with Cerebral Palsy who is in a self contained room with an IEP, I believe he is exactly where he needs/should be. He would get lost in the pace of the general education classroom. He is thriving and goes into the gen ed. room for one subject hopefully that increases as he is ready. His situation is really good for him. At the school I teach out all students are included in the general education classroom in all aspects. While I like that they are with their age level peers, some of them should not be in my classroom and I feel that itās a disservice to them. For one, I am not a trained special education teacher, nor do I want to be! I do special needs every day of my life and I (gasp now!) actually like getting away from it for awhile. I donāt always know how to accommodate all of the special needs when I am by myself with 30 students in a classroom, and often I feel like I fail them. What I have noticed is parents come in āguns blazingā wanting everything under the moon for their kids and they forget what a day looks like in a classroom and all of the other demands placed upon teachers. I also understand it isnāt the fault of the parents that our education system is broken, but it is also not my fault and having parents belittle and degrade me because I forget to do something one day is very upsetting. As a teacher I really do want the best for my students and I do my absolute best to advocate for all of them. I also realize that while my sonās situation may not be perfect, his teachers are trying their best. I really believe that a smaller class with more one on one attention is what he needs. He needs more time on concepts than the average third grader. I donāt know how to fix it, but a good start would be for parents and teachers to start believing that we are all on the same team.
Hi, but haven’t you ever wondered what would have happened (what is the worst thing that could have happened) if your son was given this full IDEA rights? By this I mean, what if his school would have actually started him in 100% general education with supports like the federal law says all students must start (continuum of placement)–and maxed out those supports before moving him along the continuum to a more restrictive location? This isn’t an option for a lot of us, even though the law says it is a right for all of us. I wonder how bad it would have been for him? I understand that teachers are not supported and the system is so entrenched in ableism and segregation that the continuum of placement rule seems unfeasible. But it doesn’t mean we shouldn’t try and follow the heart of the law and all the research. How will we get there if we aren’t all staunch anti-segregationists? We will never get close to support for teachers and truly UDL classrooms that support all learners if we have parents/teachers that support segregated classrooms.
Based on my experience in the last 5 years, I think staff (admin staff, teacher and EA) training and staff attitudes, limiting beliefs and low expectations of students with special needs are the biggest barriers to inclusion.
As a current public education teacher I found this an eye opening read. If Iām going to be honest, I donāt feel like I have enough time in my day to teach and tend to everyoneās personal needs. I can say I am really good about modifying work based on accommodations but that requires a ton of documentation and weekend hours. As much as I want to, I just canāt seem to find the home/life balance while still meeting the needs of 56 students. I am currently in a co-teach classroom setting where I have a SPED certified teacher come in for half of my class and help students in small groups after my whole group lesson. I think our school is personally trying to move toward more of a personalized learning setting so we can be more inclusive, but that requires a lot of change including our report cards and standards. I also think we want to keep all children safe and sometimes itās hard to do that with a huge classroom of 28-30 students with multiple allergies, medical needs, and personalized plans. If the outcome is to teach, it can be hard to do that with behaviors, yelling out, throwing chairs, and even with some of my kids hallucinating and seeing things. I completely agree that everyone should be included in the classroom, but I think the change needs to start with smaller class sizes, better training for teachers, and more funding and support from the community. Itās really hard to provide the best possible education when you feel like you just donāt have the time to possibly maintain all of the expectations put on you alone. I would love to know how to better accommodate the needs you feel are a necessity in an actual classroom setting. Are there resources that you could direct me to that might make this easier for me in my classroom?
Hi Ashley! Thanks for responding. I would read my response to Michelle. But also I would say that no classroom should have 50% students with disabilities. That’s not inclusion. Natural proportions are somewhere around 12%. 12% of Americans have disabilities, so no classroom should have more than 12% students with IEPs. Does that make sense? Two teachers should not be responsible for shouldering all of the high support kiddos. As for resources, I would definitely check out any and all training on Universal Design for Learning (UDL). UDL is a requirement under ESSA, but it’s also just good teaching. If you’re a good teacher you’re probably already doing a lot of UDL techniques. Search for Universal Design for Learning Facebook Page and join…they post a lot of trainings and research and techniques. Thanks for teaching!
As an educator, I struggle with this article. While I have a special education degree I also have a classroom full of 20 students all with different unique needs. 15 of my students have individualized plans. I spend over 15 hours a day at school documenting and planning how to beat teach each of them. The amount of respect teaches get is overlooked and we are under paid. I have had to pay out of pocket almost 2000 dollars a year to provide different accommodations for my students. This may include flexible seating, technology or different materials to help my students be successful.
While I agree that often there is a struggle for all students to get the education they deserve, as a society we have to realize that while teachers do not go into the profession for the pay or recognition we are in a thankless, demanding, overworked environment which typically leads to our own array of problems due to the fact we are under appreciated. If we paid our teachers like doctors or lawyers I think the problem may extremely change across the country.
I am always the first to advocate for my students and I am always first to work with parents if they feel anything may need adjusting. BUT I also currently do not have children of my own and I sacrifice time with my husband (I typically get home around 9pm) in order to do so. All educators do not have this mindset, amount of time or lifestyle that can accommodate that. Especially when almost all of us work a second job just to provide for our families. For me the days I work my second job I know the next night will be even later and I will work the entire weekend as well.
Just another perspectiveā however I do agree ALL children deserve to be in a setting where they can best be taught, learn social skills and where the student, teacher and family are most comfortable.
Hi Michelle! Thanks for responding and teaching. Before my son with Down syndrome was born I also was one of those teachers that sacrificed time with my husband for long hours planning lessons for my students. You’re so right about our priorities being backwards in respect to pay. I think about what a sports player gets for throwing a ball down a field and it disgusts me.
I would say that special education teacher training programs, really all teacher training programs, do not teach about the why and hows of inclusion. If they do it’s a side note. Most programs also do not teach teachers about the law and the disability rights movement. Self-advocates are rarely, if ever, invited to talk to teachers in training about their experiences in self-contained classes and where that got them. I wish all teachers in training knew that the continuum of placement STARTS in general education first where all supports must be maxed out before moving to a more restrictive placement–that’s federal law, but too few schools follow the law–it’s so systematic that most people don’t question this. I wish they knew that ALL the research says general education with supports is the best place for all students, both academically and socially. And mostly, I wish that these teachers in training advocated for systematic change. The dismantling of segregated rooms, and the reallocating of all the resources in those segregated rooms to general education classrooms and teachers. I wish special education teachers and general education teachers could work side by side. That’s my dream!