Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

Why I hate the “I” in IEP

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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.

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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.

What do you think is our biggest barrier to inclusion? I could write an entire article on the continuum of placement as a barrier…and I will. But tell me what you think below.

Finding Inclusion as a Military Child with a Disability

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Tis the season to PCS! Your husband is on TDY, so it’s up to you and one power of attorney to secure the movers, sell the house, organize all 18,000 pounds of stuff you plan to move, and sell that couch that won’t fit in your new house in a new state. You can’t see out the minivan because 3 kids, 2 dogs, and all your personal items must make it across country to your moms for the next two months before you find permanent digs at your new duty station.

Military families are extremely resilient. We bloom where we’re planted. We often make fast friends, throw ourselves into new careers or hobbies, play tourist in our new town, while leaving it better than when we arrived.

Military life also presents real stressors and challenges, especially for families with children with disabilities. The Exceptional Family Member Program (EFMP), a.k.a. the PCS gatekeeper, throws in a whole new wrench into the works. Orders often center completely around the military child with a disability, rather than the active duty member. You can’t go to your dream duty station, Germany, because the services are supposedly inadequate for your child. You have to say goodbye to that excellent Speech Pathologist who did PROMPT, and the gap in service while moving could mean a real gap in your child’s communications skills. You heard from another military wife that the schools in the neighborhood you want to live in don’t even follow the law, much less do inclusion.

How can a military family advocate for full inclusion for their child with a significant disability when they’re dealing with so many other moving parts? How does a military child maintain a consistently inclusive educational career when they move every 2 to 4 years?

These are two very difficult questions that I’m not sure I can tackle in one post or even have a complete answer to. My hope is that I can post a few tips that works for my son with Down syndrome, and other military families will chime in with what’s worked for them. I’d love to do a follow-up post with other family’s experiences. Here it goes!

3 Tips to Finding Inclusion As a Military Child with a Disability:

  1. Secure a solid IEP before you PCS:
    • Use those military orders to your advantage. Dangling the orders in the face of your child’s current IEP team if needed. Tell them you’re moving so writing in a full time paraprofessional, daily communication with parents, and modified homework given to the student a week before it’s due into the accommodations section of the IEP should be no big deal. Sometimes this is all an IEP team needs to hear to make some real effective changes to the IEP.
    • The Individuals with Disabilities Education Act (IDEA) requires the new school district you move to to provide a comparable IEP for at least 30 days. This gives you time to make your case to keep the current IEP or improve upon it. The new IEP team must also give you a Prior Written Notice (PWN) explaining WHY they won’t follow the IEP from out of state. Many schools don’t want to make a denial of comparable services in writing, so make sure you ask for the PWN.
  2. Stalk Social Media Groups at your new duty station:
    • Social media opens up a whole new world for families of children with disabilities. There’s a closed group for everything, and could be a great starting point to find an inclusive school.
    • WARNING: some parents’ idea of inclusion may not be in line with your idea of inclusion. I had to learn this the hard way when my son started preschool at our duty station in Ohio. Although the public preschool included 50% of students without IEPs, starting in kindergarten kids were segregated. Luckily, we PCSed before I had to fight for inclusion.
    • Be specific on social media: ask what percentage of time their child spends in general education. You’re looking for at least 80% or more. Ask if proper supports are given, and if the school actually follows through with their child’s IEP.
  3. Get Serious with a Freedom of Information Request:
    • Did you know you can find out how many restraints or seclusion cases a district had in a year? Or how many due process cases a district had and the outcome? If the district had any Civil Rights Complaints made against them. All of this is public information, so once you’ve chosen one or two schools get down to business with a freedom of information request.
    • A request through the district or state office of education (special education office) can reveal so much about the school you’re hoping to choose. Anything from state complaints to individual employee complaints. Go to the state’s Parent Training and Information Center to find out how to make the request for public records in your new state.
    • Side note: this is completely different than looking at school rankings on line (think “Great Schools” and other such sites). Often the traditional rankings tell you nothing about how the district does special education. In fact, a very high rated school in Ohio was notorious for segregating kids with IEPs. So beware!

Lastly, reach out to a local special education advocate to get their take on districts that are following the law and including kids with disabilities in general education. The Council of Parent Attorneys and Advocates has a directory of advocates by state. Advocates often are filing state complaints and civil rights complaints all the time, so they will know which school districts to stay away from.

I called a local advocate before we planned to PCS to Washington state, and I’m still friends with her today. My son is also 93% included in general education with appropriate supports in a state that is ranked 3rd lowest in the nation for inclusion. Doing your homework pays off!

What tips do you have for military families PCSing with a child with a disability? How did you find an inclusive school? What do you wish you would have done differently?

Ninth Circuit Court Rules Student with Down Syndrome Can Be Moved to Life Skills Class at New School

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The Ninth Circuit Court of Appeals ruled an Arizona school district can move an elementary student with Down syndrome to a public school outside his neighborhood. The student would receive an additional 20 minutes of Specially Designed Instruction (SDI) in an “academic SCILLS classroom” at this new school.

The Appeals Court decided that the district’s decision to move the student was a change of location, not a change of placement. The court quoted the recent Supreme Court Case, Endrew F., to argue that the student would make more meaningful progress in the special class at the new school.

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The student’s parents argued against the additional 20 service minutes, stating that it would mean less time in the general education classroom. But the Ninth Circuit judges quoted Endrew F.: “even when the other factors weigh in favor of mainstreaming, the student’s academic needs ‘weigh most heavily against a mainstream environment.'”

You can read the decision for R.M. v. Gilbert Unified School District in it’s entirety here.

There is one piece of good news out of this decision: It’s NOT PRECEDENT! The 9th District did cite that their decision in R.M. v. Gilbert Unified School District is not precedent, except when relevant under the doctrine of law of the case itself. This is good news: other districts can’t use this case to argue for a similar move. The student’s family has yet to make a decision about appealing the case to the U.S. Supreme Court.

Still, the decision is detrimental to our community. After 40 years of research touting the benefits of inclusion on all children, society still believes children with intellectual disabilities should be educated separately. Not one evidence-based research study, since studies began on the topic, have shown more benefit for students in a special class. Still we fight the perception that “special” and “separate” will lead to more “meaningful benefit” for our children.

Read Related Post: 7 Research Studies You Can Use at Your Next IEP Meeting to Win the Fight for Inclusion

School districts should be focused on changing the general education environment to benefit all students through Universal Design for Learning (UDL) and diverse learner training for all teachers. Instead, districts are using the same old model of segregation that’s leads to a 50% graduation rate for all students on IEPs (much higher for students with significant disabilities), and an 80% unemployment rate for people with disabilities.

Read Related Post: Promoting Inclusion Through Universal Design for Learning

Check back for updates on this case and more.

Location v. Placement

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A recent U.S. Ninth District Court of Appeals court case surrounding the Individual Education Plan (IEP) of a student with Down syndrome is creating a larger conversation surrounding placement versus location change. In kindergarten, the IEP team wanted to add 20 minutes more pull-out time. The parents disagreed with where the team wanted to do these extra minutes. Instead of the resource room at his neighborhood school, the team wanted to move him to another school with a self-contained class.

This complex case brings up some very important questions: What defines a placement change? Is placement only about percentage of time in general education? Or is it also about setting?


The student’s lawyers in the R.M. v. Gilbert Unified School District case argue that placement is more than just a math computation. “If a district can call a change to a different school a location change, then any child who receives any amount of specialized instruction on a pull-out basis can be moved to a different school at any time as long as the general education minutes remain the same. This will greatly interfere with students attending their neighborhood school, developing friendships in a school that they stay at throughout their education. LRE should mean more than how much time you are in a general education classroom,” Susan Marks, attorney who represented R.M. at the administrative hearing level.

Read Related Post: Details about the R.M. v. Gilbert Unifed School District

The school district, on the other hand, wants to broaden their power of location change. If the judges rule that this was a location issue, then moving a student to any school in the district would be left up to the professional judgement of the school district. “The district gets more bang for their buck if they can pull student into a self-contained class at a centralized location. It’s the medical model. And many people don’t understand why a parent wouldn’t want a specialized program for their child,” explains Marks.

In fact, 9th District Judge Susan Graber reinforced this societal stereotype of parents and students with disabilities when she said “I’ve never heard of a parent who wanted less services.” The implications of this statement sent shock waves through the Down syndrome community. Of course the parents in this case don’t want less. They’re more concerned with what they’ll lose if their son is moved to a school outside his neighborhood and put in a self-contained class instead of a resource room. Disability advocates know what happens next: More minutes spent in a self-contained class. Then they’ll propose a different curriculum, no hope to graduate, and 80% unemployment upon transition to the real world.

It’s obvious these parents care. The Individuals with Disabilities Education Act (IDEA) gives parents the right to decline services. The district can’t say all or nothing. We all have known a parent who refused Physical Therapy or some other service, because it would mean more pull-out time for their student with an intellectual disability. More turns to less.

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Many advocates in the special education advocacy community are very anxious about this case, because the impact could be far reaching. There are legal limitations to LRE and inclusion. The law does give deference to school districts to consolidate services at limited locations. IDEA says students with disabilities must be educated with their typical peers, unless their IEP requires otherwise. The district has argued that R.M.’s current school does not have a self-contained program, so he needs to go to a school that does. Still, Marks argues this is not just a location change, because the self-contained class is a different program than the resource room at his neighborhood school.

This case won’t be as clear cut as L.H. v. Hamilton School District, because in that case Luka went from being fully included in general education all day to a proposal to move him to a fully self-contained class at a different school. The boy in this case has more pull-out time already, and the school district argues his general education time will remain the same albeit at a different school.

The issue in this case comes down to resource room at his neighborhood school or the same amount of time in a self-contained class at another school. Does he need the self-contained class? “We argue he doesn’t because he’s making progress on 100% of his IEP goals in his current placement,” Marks explains. While the school district uses Endrew F. v. Douglas School District to argue they’re trying to be more ambitious, the truth is they’re trying to segregate him into a homogenous group with other kids like him. This is the very anti-thesis to LRE, and not what the research is finding as best practice for inclusive education. 

Read Related Post: How School Districts are Using Endrew F. Against Students with Down Syndrome

9th Circuit judges have yet to make a decision in R.M. v. Gilbert Unified School District. I will be sure to keep you updated. The family or school district can appeal the decision to the U.S. Supreme Court.

Ninth Circuit to Decide Least Restrictive Environment for Student with Down Syndrome

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Disclaimer: I am not a lawyer, and cannot give legal advice. The following is my interpretation, as a lay advocate, of the 9th Circuit’s hearing of R.M. v. Gilbert Unified School District on April 11th. My blog supports inclusion for people with intellectual disabilities, and my opinions are my own.

The Ninth Circuit Court of Appeals heard arguments today in a case centered on placement and the Least Restrictive Environment (LRE) for a elementary student with Down syndrome.

During his kindergarten year, the IEP team for an Arizona boy requested 20 additional minutes of pull-out time in a life skills class at another public elementary school five miles away from his neighborhood school. At the time, teachers reported that he had made some progress on 100% of his IEP goals. The parents refused, arguing that the decision amounted to a change in placement and invoked their “stay put” rights. He’s still currently at his neighborhood school, where his sister also attends. He spends the majority of his day in general education with a 1:1 aide.


Read Related Post: Endrew F. Supreme Court Case in Action

During the 15 minute hearing in front of the 9th Circuit of Appeals, the family’s lawyer, Amy Langerman, stated that there were three givens in the boy’s case:

  1. The Supreme Court of the United States explained in Endrew F. that a Free and Appropriate Education (FAPE) for a student with an intellectual disability does NOT require them to keep up with their typical peers. Langerman argued that the boy in this case had made progress in light of his disability on 100% of his IEP goals in the general education classroom.
  2. Congress, in creating the Individuals with Disabilities Education Act (IDEA), strongly prefers that children with special needs be educated to the “maximum extent appropriate” with typically developing peers and removal should only occur “when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.” Langerman argues that the 9th District the court must follow the “Rachel H. Standard” of LRE, which contemplates the (1) educational benefit of placement full-time in a regular classroom (2) the non-academic benefits of that placement (3) the effect the child would have on the teacher and other students (4) the cost of mainstreaming the child.
  3. Lastly, Langerman argued the code of standard for LRE states a child should attend the same school they would attend if they were not disabled. In this case, Langerman argued the neighborhood school is the boy’s LRE.

As soon as Langerman finished her opening statement the female judge on the 9th Circuit surprised me by stating that this was the “first time a parent was arguing that there giving too many services to their child.” The judge seemed confused as to why the parent wouldn’t want her child to be given 20 more minutes of Specially Designed Instruction (SDI) in a life skills class at a different elementary school. Langerman responded to this to say that the parent agreed with teachers’ initial comments in the IEP meeting that he was making progress towards all of his IEP goals. She also stated that parents of children with disabilities everywhere would be celebrating in the streets if Congress would create a higher standard of education for students with disabilities, but that’s not the law. The law requires they be educated with their typical peers in LRE, and make meaningful progress towards their IEP goals. And the boy in this case was making progress, and not minimal progress.

The female judge also stated that there’s “evidence to support what the district calls for,” in that the law does NOT “require” a student be educated at their neighborhood school if that school doesn’t have the appropriate services to ensure the student makes meaningful progress. Langerman argued that the Administrative Law Judge (ALJ) in the due process case did not have all the needed information to make a correct decision in the case, because Endrew F. came after the ALJ’s ruling in the lower court.

Read Related Post: How School Boards are Using the Endrew F. Supreme Court Case Against Students with Down Syndrome

The lawyer for Gilbert Unified School District opened her arguments with two statements:

  1. The school district wanted to provide more meaningful benefit to the student by offering 20 additional service minutes in math and writing. The boy currently has 105 minutes of Specially Designed Instruction (SDI).
  2. The school district wanted to implement these minutes in a life skills class at a public school 5 miles away.

The district’s lawyer argued that the student “has no peers at the current school.” In a very sad and dramatic tone the lawyer declared the boy “an island in the general education classroom.” She went on to say “the IEP calls for small group instruction, but there’s no peers that he receive SDI alongside at his current school. We are are aiming for higher than some or good enough progress. The district doesn’t think he’s receiving any benefit in general education. His teachers say he would benefit from a life skills class.”

The judges asked if the district had taken into consideration transportation and the impact on the family. The lawyer said the district would pay for transportation to the new school, and had taken into account the family’s situation as much as is needed under the law.

The district’s argued that “some progress would be a denial of FAPE. None of his educators thought he was getting what he needed at the current school.” She went on to argue that the case is not about inclusion or segregation, and that the law does not require him to be educated at his home school if it’s not feasible to do so and make meaningful progress. She also stated that the IEP can be written the same way in a life skills class, so it’s not a change of placement but instead a change of location. “Placement and location are separate arguments,” the district’s lawyer argued.

So the question remains: Is removing a student from his neighborhood school considered a change of placement? Does the child have a right to receive the additional 20 minutes of SDI in his neighborhood school? Or does the district have the right to move him to a school that provides a life skills class to ensure he makes more “meaningful” benefit? No decision in the case was made today. I will report back as soon as a decision is made.