Tag: inclusion

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Misconceptions about the Least Restrictive Environment

Here’s a refrain we hear all too often in special education:

“Johnny’s LRE is the Autism Program. This program is 30 minutes away from his home school and is separate from the general education classroom, but Johnny has Autism so this really is the best program in the least restrictive environment for him.”

This statement can be heard in IEP meetings, found in blog posts, even written in scholarly articles. But the Individuals with Disabilities Education Act (IDEA) and case law dispels the myth that the Least Restrictive Environment (LRE) is individualized or unique for each child. It is not. I repeat, the LRE is not individualized. Yes, the Individualized Education Plan (IEP) is individualized. Yes, the decision of a Free and Appropriate Education (FAPE) is individualized, but the LRE is a place…and it’s only one place: A REGULAR CLASSROOM.

The misuse of the LRE has led to the systematic segregation of kids with disabilities. It has led to kids who never get a chance to even try the LRE with appropriate supports as the law intended them to. They essentially lose their civil right to the Least Restrictive Environment. It has caused schools to fail to follow more than 40 years of research on how to best educated children with disabilities.

Read Related Post: 7 New Research Studies to Win the Fight for Inclusion

Now some of you may be thinking “Wow, that word segregation seems kinda harsh,” but I would implore you to look at this from a civil rights lens. When we speak of students of color being separated from white students we call it what it is: segregation. Why wouldn’t we do the same for students with disabilities, especially when Congress makes clear that their intent of IDEA is to ensure students with disabilities are educated alongside non-disabled students and to have access to the general education curriculum in a regular classroom with supports. Here’s the actual language from IDEA:

§300.114 LRE Requirements. 

Each public agency must ensure that to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are nondisabled; and special classes, separate schooling, or other removal of children with disabilities from the Regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of  supplementary aids and services cannot be achieved satisfactorily. 

The fact is IDEA demands that any move to a more restrictive placement be an issue of FAPE. A discussion of whether or not the child can satisfactorily receive a FAPE in a regular classroom must be discussed and tried first before moving to a more restrictive environment. The problem is: this too often doesn’t happen. Instead, students with certain disabilities are automatically labeled as too disabled to even try the regular classroom. Or the district puts them in the regular classroom without maximizing appropriate supports, and moves them as soon as trouble arises.

Read Related Post: Endrew F. In Action

Case law reiterates Congress’ strong preference to have students with disabilities learning alongside their non-disabled peers in a regular classroom with supports.

  • Roncker Portability Test, 1983

–Can services provided in segregated setting be transported to the general education classroom?

–If so, then they must be provided in the regular classroom first. Special education is not a place. Services must be portable, and preferably brought into the regular classroom.

  • Daniel Two-Part Test, 1989

–Can meaningful education be provided in general education classroom with supplementary services and aids?

–If not the the student still must be integrated in regular education to the maximum extent possible.

The U.S. Supreme Court recently made it clear that children with  disability must make “meaningful progress” on general education curriculum in light of their disability. This means school districts must ensure IEPs are “appropriately ambitious,” and follow IDEA’s statutory intent to serve those students in the LRE. 

It is a red herring to say that a more restrictive placement is somehow a student’s Least Restrictive Environment. It distracts from the fact that placement is an issue of FAPE. If the school district determines a child must be placed in a more restrictive setting they must give a cogent, responsive reason why they have determined the child’s disability is so severe that the child cannot receive a Free and Appropriate Education in the regular classroom even with the use of supplementary aids and services. 

We need to start saying what we mean and meaning what we say. Or in this case, we need to start saying what Congress meant by the LRE. By using the LRE in the wrong context we’ve creating a system where too many children never have a chance to be education in the place that Congress wants the child to start and where all the research proves is most beneficial: the regular classroom. 

Learn More about the Misconceptions of LRE here:

Busting-Myths-About-LREDownload

Let’s start today by changing our language around the Least Restrictive Environment. Have you or your child with a disability faced systematic segregation because of the misuse of the LRE? Tell me your story in the comments below.

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“I Have A Dream…”

“I have a dream. It’s a dream deeply rooted in the American dream…”-Martin Luther King

I have a dream one day our sons and daughters with disabilities will be valued as equal members of their community. I have a dream teachers and principals will set high expectations for our children, realizing the value of inclusion with their typical peers.

I have a dream those non-disabled peers will one day become employers and community leaders who provide adults with intellectual and developmental disabilities (I/DD) the opportunities they deserve to fulfill their true potential. That those typical peers will become caregivers, researchers, therapists, and medical professionals who look at people with disabilities, not as a problem to be fixed or eliminated, but as a beautiful expression of humanity to be shared with the world.

Rev. Dr. Martin Luther King Jr. speaking. (Photo by Julian Wasser//Time Life Pictures/Getty Images)

On Monday, January 18, 2021, we celebrate Martin Luther King’s birthday and are reminded of how interlinked the disability community’s struggle is with the African American community. Without downplaying the abhorrent past of slavery, there’s still a lot of connections to be made. Both movements are struggles for basic human rights: freedom, equality, and justice.

Read Related Post Here: Advocates Urge Congress to Increase Funding for Down Syndrome Research

The Civil Rights Act of 1964 woke up parents of children with disabilities. The public and their representatives in Congress began to understand how segregation and unequal educational opportunities were the anti-thesis to the American dream. Before the 1970s, many children with disabilities were not given the opportunity to attend school at all. As Congress was formulating the Individuals with Disabilities Education Act (IDEA) of 1975, there were 36 pending court cases over the rights of students with disabilities.

More than 30 years after the civil rights movements began, great progress has been made for both black Americans and people with disabilities. The most abusive and neglectful institutions have closed their doors. Courts have expanded their interpretation of the 14th Amendment’s “equal protection clause” to include minorities and those with disabilities. Segregation has legally ended for both groups (including the Americans with Disabilities Act (ADA), Rehabilitation Act–including section 504, and IDEA for people with disabilities).

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

But we know, even though both groups have made great gains legally, they still face prejudice and exclusion. Only 16.35% of students with I/DD are included in a regular education classroom with supports for most of their school day. Black students are overrepresented in special education and are more likely to be identified as having an intellectual disability than their white peers. The intersectionality between race and disability is ever apparent.

The Supreme Court recently ruled in Endrew F. that schools must provide a “more meaningful benefit” to students with disabilities, but some school districts and national organizations are interpreting this to mean students with the most significant disabilities must be segregated to earn this benefit. (Read more about this here).

In this highly partisan time it often seems like one step forward and one step back. For example, last year the Department of Justice scrapped ADA guidance that promotes integrated work for people with disabilities. With unemployment for people with I/DD at 75%, this is a step backwards. We need more guidance, not less. (Read more about the rescinded ADA guidance here). Fortunately, the U.S. House of Representatives recently passed the Raise the Wage Act, which will phase out sub-minimum wages. Click here to email your Senator to support this bill.

Let’s make the year 2021 about fully realizing the rights and humanity of people with disabilities of every race. There’s so much more we can do for and alongside our brothers and sisters with disabilities.

Progress will continue! It will take tireless action from self-advocates and allies. When our government and institutions waver in indecision about full inclusion for our loved ones, we must forge forward. So what can you do this Martin Luther King Day to advocate for someone with Down syndrome?

Call to Action

  1. Advocate: learn about your student with a disabilities rights and how to advocate at the IEP table by signing up for a FREE webinar here, read online resources or order an advocacy book here, joining the Council of Parent Attorney’s and Advocates here, or the National Down Syndrome Advocacy Coalition (NDAC) here.
  2. Think College: make it your child’s long-term IEP goal to go to college. There’s more than 260 college options for students with I/DD. Check it out here.
  3. Donate: give to your local Down syndrome affiliate, or to a specific cause. Global Down Syndrome Foundation has been raising money this year to create updated, evidence-based medical guidelines for adults with Down syndrome. Click here to find out more.
  4. Legislate: support national legislation to end organ transplant discrimination of people with disabilities. You can read about the state legislation I helped advocate for in Ohio here. Read about the federal bill here.

How do you feel about the state of disability rights? What do we need to do right now to continue moving forward? Comment below.

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Why I hate the “I” in IEP

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.

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.

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Clearing the Way for Systems Change in 2020

11-year-old Salome is a female of color with a disability. English is a second language for her immigrant parents, and her extended family lives far away. Many students like Salome and their families are disenfranchised by the special education process, and don’t feel like they can adequately advocate for inclusion and proper supports under the law.

Salome (right) with her mother and father

“I’m always mindful of our privileges and challenges,” says Salome’s mother, Catalina Angel. “In many ways we are like any family with dreams of a good future and in may ways we struggle in a place where we constantly have to demonstrate that we have worth.”

Read Related Post: 5 Ways You Know You’ve Become Your Child’s Best Advocate

Salome’s journey to full inclusion was a rocky one that included self-contained classes and her mother finally realizing she would have to learn the system and change it if she wanted her daughter to get an appropriate education.

One mom’s desire for inclusion for her own daughter turns into a systematic change for all children with disabilities in her district.

​”We first needed to learn about how the education system works in this state, because my husband and I were educated in different countries. He is Cuban and I am Colombian. We had to learn a whole new system in a different language. We face multiple layers of challenges and we are still learning how to navigate everything for our family and others,” Catalina explains.

Catalina’s realization is an important one for our community: most of us start advocating for our own child. But if we stop there, and don’t seek systems change for ALL people with disabilities our advocacy work is a dead end. It’s also important to point out the intersectionality of Salome’s experience and how that creates barriers to advocating for systematic change.

What would you like to see change in 2020?

May be it’s an end to sub-minimum wages in your state. It might be a federal increase in wages for Medicaid care providers. Possibly an organ transplant anti-discrimination bill passed in your state. Or maybe you’d like your local school districts to actually follow the continuum of placement by starting in the least restrictive environment (general education with supports) every school year. You may even want to take it a huge step farther and end the continuum of placement all together…honestly, the Individuals with Disabilities Education Act (IDEA) promotes segregation of students with disabilities in “special” classes which research doesn’t back up as best practices.

Read Related Post: When Being “You” Is a Form of Activism

If any or all of these systems changes seem too out of reach to tackle in 2020, remember that all it takes is one person with passion to start a big change.

What are the ingredients for systems change?

The Arc of King County’s Inclusion Academy shared some invaluable tips to creating change. Whether it’s micro-scale (creating an inclusive environment in your school district) or large scale (passing a bill), these 7 elements will help get you there:

  1. Clarity: ​You need clarity around action. You need to be able to answer: What, why, how, when and where first for the problem you see, then the action to resolve it.
    • For Salome, barriers to inclusion started with the district special education coordinator’s determination that her neighborhood school “was not equipped to support her.” Catalina says the district even proposed sending her to two separate buildings during her school day to receive academic and related services like OT, PT, and Speech. Our status has a direct impact in Salomé’s opportunities, choices, and development. People have low expectations of Latinos who are not working in the big companies, even if we have higher education. I have a lot of stories of discrimination and barriers to inclusion.”
  2. Data: To convince people to do something differently, you need research on your side. Any potential allies will ask for it. People who haven’t bought into an idea will challenge you.
    • In Salome’s case, this is an easy find. Federal law and all of the research on Least Restrictive Environment shows inclusion in general education creates the best outcomes for all students. (See 7 New Research Studies to Win the Fight for Inclusion). Salome’s father also used his background in engineering to track her lack of progress in self-contained to make a case for inclusion.
  3. Stories: Unfortunately, data alone is often not enough to make systems change. Many change-makers rely on stories to personalize what’s at stake. Who does this change affect? What do the players have to win or lose?
    • Catalina says sharing Salome’s experience in a self-contained class convinced others to work for systematic change throughout the district. ​”She spent two years in a self-contained class. The general education teachers never considered her as their student. She was followed by adults everywhere. She expressed her frustration with anger and desperation so she was labeled as an ‘aggressive and violent’ student. It was a constant battle and still it’s hard for her to articulate in words.”
  4. Allies: You need friends who share your vision and goals. You do not have to create a formal coalition, but allies will want direction. They will want to know what they should do. They will ask for talking points and specific ways to help.
    • This key element is what really changed Catalina’s advocacy from an individual fight for her own child to a systematic change for all children with disabilities in her district. “I got highly involved with the special education PTSA where I met wonderful parents who taught and encouraged us. I talked with the Washington Office of Education Ombusd (OEO) for advice and clarification of the law around Less Restrictive Environment (LRE) and requested to tour schools based on other parents’ experiences and some teachers’ we know,” Catalina explains.
  5. Champions: You need someone who can influence the system or organization that you want to change. This can include civic leaders, other organizations, professionals in the field, well-respected community members. It can also include unexpected voices – like students. 
    • In 2017, Catalina got her champion: a change of leadership in her district’s Student Services department. “The SpEd PTSA, the new Director of Student Services and a small number of administrators agree to become a Special Education Advisory Council last year with the intention to build a collaborative relationship and to strengthen the communication between the District and the community in benefit of the students. The district has agreed to provide training for parents, guardians and caregivers on IEP, behavior supports and other topics of interest. The parent group is creating dialogs to inform the district on what is working and what needs attention.” Learn more about how to form a Special Education Advisory Council (SEAC) in your district here.
  6. Media: The news media and social media can be effective in explaining research, telling stories, and validating your cause. Be sure to first identify your audience; that will help you identify appropriate media partners.
  7. Celebration and Maintenance: Catalina says “Salomé is now included in all the areas. She receives direct instruction from multiple sources, general and special education teachers know her goals and have high expectations. She knows who to go when she needs support and sometimes peers step up to do it too. She knows she belongs to the whole student body.” Celebrate every small and big step towards systems change, and remember to remain vigilante. Thank people often and publicly.

Salome and her family are unlikely change-makers. The intersectionality of race, language, and disability often works against students seeking a free and appropriate education in the least restrictive environment. Most system changers are white, affluent, well educated families with connections. But Salome’s family shows that passion and hard work can lead to systems change:

“My advice to immigrant, and second and third generation of immigrant families are to meet other parents. Learn the law and stay connected. Advocacy is key for the future of our children. School advocacy is just the beginning. The need to advocate for individuals with disabilities to live a full life is never ending. Please get back to your community once you’ve learned how to advocate. There will be parents with younger children just like us who are starting their journey and they need more than individual advocacy efforts- they need systems change!” Catalina says.

What systems change do you want to or have you already started working on? Share your tips and concerns below.

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Inclusion Must Start in Preschool

My twin sons attended the same Ohio public preschool class. My son with Down syndrome went for free and received important supports and services like Speech, OT, and PT. The other twin served as a tuition-paying typical peer in a class that was 50% students with developmental disabilities and 50% typical learners. They both benefited greatly from this inclusive model in early childhood, and I believe it will set the trajectory for inclusion over my sons’ life.

Inclusion in early childhood education is supported by all the research, and has a strong legal foundation. The Individuals with Disabilities Education Act (IDEA) requires preschools to educated students with disabilities in general education alongside their typical peers to the maximum extent possible. However, “too many preschool children with disabilities are only offered the option of receiving special education services in settings separate from their peers without disabilities” (USDHHS & USDOE, 2015, p. 2).

Read Related Post: Everything I Need to Know About Inclusion I Learned in Preschool

I learned how lucky my twins were once we moved from Ohio to Washington state. As they entered kindergarten in one of the few area elementary schools that practiced inclusion, I realized almost every public preschool in our county was segregated. If I had wondered at why so few Washington schools really practiced inclusion in k-12, I now had my answer. Inclusion starts in preschool and Washington state, by and large, doesn’t practice inclusion in preschool.

School districts may argue that parents can take their child with a developmental disability to a private preschool with typical peers and still receive itinerant services (like SLP, OT, and PT), but I wonder how many parents of preschoolers realize that’s an option. Often it’s not an option, because there are too few private preschools and the public school forces you to work around their schedule for itinerant services. It also begs the question of whether or not the school is violating the Free and Appropriate Education clause of IDEA if parents are paying for private preschool tuition. This option also fails to explain why districts are not providing a full continuum of placement in a public school setting per IDEA– from general education with supports to self-contained classrooms.

Read Related Post: 7 Research Studies To Help you Win the Fight for Inclusion

More than 40 years of research proves that inclusion, especially in early childhood, provides the best outcomes for all students. Here’s just a few of the benefits of inclusive preschools:

Children with Disabilities:

  • Can make significant developmental and learning progress in inclusive settings (Grisham-Brown, Pretti-Frontczak, Hawkins, & Winchell, 2009).
  • Experience greater cognitive and communication development than children with disabilities in separate settings (Green, Terry, & Gallagher, 2014; Nahmias, Kase, & Mandell, 2014; Rafferty, Piscitelli, & Boettcher, 2003).
  • Are more socially competent than peers in separate settings. They have more social interactions and a larger network of friends (Katz & Mirenda, 2002; Justice, Logan, Lin, & Kaderavek, 2014).

Children without Disabilities:

  • Can show positive developmental, social, and attitudinal outcomes in inclusive settings (Diamond & Huang, 2005).
  • Are capable of demonstrating greater compassion and empathy, and develop a better understanding of human diversity (Odom, et al., 2004).
  • Benefit from the learning and developmental supports provided by teachers skilled in meeting the needs of individual students (Odom, Buysse, & Soukakou, 2011).

Families:

  • Typically view early childhood inclusion positively (Barton & Smith, 2014).
  • Desire friendships between children with special needs and peers who are typically- developing (Strain, 2014).
  • Enjoy greater connections with other families and community resources and increased participation in their community (Delaware Health and Human Services, 2013).

Teachers and Other Early Childhood Practitioners:

  • Partner with colleagues who bring new perspectives and skills into the classroom and demonstrate new instructional techniques (Louisiana Department of Education, 2012).
  • Hold higher expectations for children with disabilities (Baglieri & Shapiro, 2012).
  • Differentiate and consider each student’s instructional level, learning preferences and interests (Odom et al., 2011; Tomlinson, 2000).

Communities

  • Understand that inclusion is not just a disability issue, but that all children and families have a right to participate in and be supported in their schools and community (Wolery & Odom, 2000).

School districts who don’t provide an inclusive preschool option in the public school setting are breaking the law, plain and simple. Districts must provide a full continuum of placement from full inclusion in general education with supports to self-contained classrooms or private settings. That’s why I’m meeting with my state representative and the state head of developmental disabilities to advocate for systematic change in Washington state. Even though preschool no longer directly impacts my sons, I’m convinced systematic change in preschool inclusion will make a difference in k-12 and the entire lifespan.

Does your preschooler learn alongside their typical peers? How as been your experience with developmental preschool? Tell me your experience below.