Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

Teen with Down Syndrome Wins Inclusion Case in Federal Court

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Breaking news!!!! I’m so happy to announce the Sixth Circuit Court of Appeals affirmed a lower court’s decision that 15-year-old Luka’s school district violated the teen’s rights to a free and appropriate education in his least restrictive environment. In a lightning fast decision, the 6th Circuit Court also ruled that Hamilton County Department of Education in Tennessee must reimburse Luka’s family for the cost of private school education.

Luka’s mom, Deborah Duncan, said today’s decision validates years of fighting for Luka’s right to be a fully included member of his school community. “Hopefully this will prevent other students from facing segregation, empower families to insist on real educational services and measurable outcomes for their child with a disability, and make it impossible for schools to continue discriminatory practices against students with disabilities,” Deborah says of the decision.

Read Related Post Here: Ninth Circuit Court to Decide if Student with Down Syndrome Can Stay in General Education Classroom

Hamilton County School District in Tennessee wanted to place Luka for half his day in a self-contained classroom in a school outside of his neighborhood. “The segregated class follows no state curriculum or standards. There’s no homework or grades. No accountability,” Luka’s mother Deborah Duncan explains. Knowing Luka would not receive a Free and Appropriate Education in the Least Restrictive Environment if he stayed, Deborah moved her son to a Montessori school where he continues to attend today.

Deborah with her son, Luka

After paying private school tuition, $75,000 dollars in legal fees, and a five year battle with the school district the family eventually prevailed at the district court level in Tennessee. The District Court ruled that a self-contained class is more restrictive than necessary, but that the family would not receive reimbursement for the private Montessori School.

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

Then Hamilton County Schools filed an appeal to the Sixth Circuit Court of Federal Appeals. “They have no ground to land on, but it allows them to delay reimbursement of our legal fees. They just look vindictive and have spent a lot of taxpayer money just to violate the law. We finally decided to cross appeal for reimbursement of the Montessori school private tuition,” Deborah explains.

Now the Sixth Circuit has ruled that the district must pay the family for all the years of private tuition they incurred, and upheld the lower court’s decision that Luka’s rights to FAPE in LRE were in fact violated. Today’s decision will impact students with disabilities in the states of Tennessee, Kentucky, Ohio, and Michigan.

Read the full text of the decision here.

15-year-old Luka

Have you or someone you know had to fight a similar battle for inclusion? Are you frustrated that we’re still fighting this fight more than 30 years after the Individuals with Disabilities Education Act (IDEA) was passed? Tell me about it below.

Fostering Acceptance in the Classroom

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The first couple of weeks of school is what teachers like to call the “honeymoon phase”. When I taught, I remember students always being on their best behavior. But soon students will become more comfortable and a classroom hierarchy will develop. Students begin to notice those that may be different, and will start making comments or asking questions.

As a parent of child with Down syndrome, I’ve often wondered how I would formally introduce my son to his typical peers. My son, Troy, has had the same preschool teacher for the past two years, and his teacher and I have a decided not to do any formal explanation of Troy’s differences. He is more alike than different, after all. And the 3 and 4-year-olds aren’t concerned about labeling his difference.

When and how should parents formally introduce their child in a classroom setting, and promote disability awareness and acceptance? 

First, let’s talk about what NOT to do. You might have come across the use of disability simulations: marshmallows in the mouth to simulate low tone and lack of intelligibility, hands in mittens to simulate poor fine motor skills, blindfolds to simulate–well, being blind. Do you notice what all these simulations highlight?

What a person can’t do, rather than how individuals with disabilities successfully adapt to their environment with the right modifications and supports.

Instead of promoting empathy and awareness, research studies show disability simulations actually promote fear, apprehension, and pity towards their classmate with a disability. Also, because the simulation is only for a short time, it’s hard for typical students to truly experience the classmate’s limitations in a meaningful way.

Awareness Activities in Grade School

Many teachers and parents like to take a more broad approach to awareness of differences in lower grades. For instance, in kindergarten through 2nd grade you may not even mention the term “Down syndrome” or “Autism.” Many parents decide the discussion shouldn’t single their child out, but foster acceptance of all students. Children’s books are a great way to foster acceptance of people for who they are. Here’s some examples:

“My Friend Isabelle” by Eliza Wilson: I love this book, because it starts with two friends that have so much in common, but also talks about differences. The reader only finds out that one character has Down syndrome by reading the jacket note at the end of the book. It also has a guide to help teachers and parents incorporate the book into a classroom lesson. Watch the YouTube click below for a video version of the book.

“The Day the Sheep Showed Up” by David McPhail: About farm animals who had never met a sheep before. The sheep teaches them that they are more alike than different. Great metaphor for accepting those that are different, and fabulous for new readers.

“King Louie and His Marshmallow Kingdom” by Louis Rotella: About a little king who rules over a kingdom where the sun always shines and every meal is a picnic. Louie explains to his friends that he loves to do kid-things, even though he’s different. This is one of my all-time favorites!

Awareness Activities with Older Students

Books can also be used with older students, and some may actually define a disability. But more hands-on or project-based activities are also fun at this age. Open discussions about what students already know about disabilities (or think they know) is imperative. Prior knowledge allows teachers and parents to assess where to start, as well as any preconceived notions students may have. Discussing inclusion is also important at this age. All kids want to be included.

The Governor’s Council for People with Disabilities did a fabulous disability awareness campaign in Indiana and posted all of their lessons here. Some of their ideas include:

  • Students create a class motto for inclusion
  • Anonymously write questions students have about disability and difference, and have those questions read and answered as a class (or in private)
  • Create a classroom mural that depicts what an inclusive class, school, and community looks like
  • Perform a simple skit showing appropriate and inappropriate ways to interact with classmates with disabilities: people’s first language, asking before you help someone, inviting classmates to special occasions, treat your classmate the way you want to be treated
  • Show a movie or show that depicts someone with a disability as the main character
  • Evaluate their school or local business to see if they accessible for people with disabilities. If they’re not, come up with a plan to change that.
  • Invite a sign language interpreter to teach students some simple signs.

What are you planning to foster acceptance in your child’s classroom? Add some ideas in the comments sections.

The following are some other books that may help you foster acceptance in the classroom:

Tennessee Boy’s Inclusion Case Goes to U.S. Circuit Court of Appeals

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The Sixth Circuit Court of Appeals has agreed to hear oral arguments in a case involving a student with Down syndrome, and the school district that refused to provide him a free and appropriate education in the least restrictive environment. Like many special education court decisions, the results of this case could either give families courage to fight or could be huge potential setback in the battle for inclusion.

Hamilton County School District in Tennessee wanted to place Luka for half his day in a self-contained classroom in a school outside of his neighborhood. “The segregated class follows no state curriculum or standards. There’s no homework or grades. No accountability,” Luka’s mother Deborah Duncan explains. Knowing Luka would not receive a Free and Appropriate Education in the Least Restrictive Environment if he stayed, Deborah moved her son to a Montessori school where he continues to attend today.

Deborah with her son, Luka

Read Related Post Here: Ninth Circuit Court to Decide if Student with Down Syndrome Can Stay in General Education Classroom

After paying private school tuition, $75,000 dollars in legal fees, and a five year battle with the school district the family eventually prevailed at the district court level in Tennessee. The District Court ruled that a self-contained class is more restrictive than necessary, but that the family would not receive reimbursement for the private Montessori School.

Then Hamilton County Schools filed an appeal to the Sixth Circuit Court of Federal Appeals. “They have no ground to land on, but it allows them to delay reimbursement of our legal fees. They just look vindictive and have spent a lot of taxpayer money just to violate the law. We finally decided to cross appeal for reimbursement of the Montessori school private tuition,” Deborah explains.

Now the Sixth Circuit has agreed to hear oral arguments on July 26th. Luka’s attorney is confident, but there is a risk that the Appeals Court could uphold the lower court decisions under IDEA, ADA and Section 504 but still deny any reimbursement or compensatory education. “This would have a ‘chilling effect’ that prevents families and attorneys from pursuing these cases because there are no consequences. We would just hate that,” Deborah says. Any decision would create precedent in the states of Tennessee, Kentucky, Ohio, and Michigan.

15-year-old Luka

The Supreme Court of the United States ruled that families can be reimbursed for private school tuition if the public school IEP was found to be inappropriate, and if the private school placement is deemed to be the most appropriate available option (School Committee of the Town of Burlington v.Department of Education of Massachusetts). “The District Judge even stated Luka made progress at the Montessori School, and he ruled the public school was inappropriate. I think he knew there was a clear violation, but just didn’t want to penalize the school district by making them pay for the private school tuition,” Deborah explains.

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

“What has discouraged and flummoxed me most has been the willingness of school systems to spend more than a MILLION DOLLARS and three to ten years fighting to deny ONE STUDENT with an appropriate education! We weren’t asking for any service that the school doesn’t already provide other students. We weren’t asking for any unique locations or times. We just wanted accommodations and modifications in the regular education classroom. With the amount of money the school system has wasted in legal expenses to-date, every teacher in the district could have received multi-day training in providing accommodations and modifications every single year (into perpetuity) AND paid for the most expensive private school in our state through Luka’s graduation! What sense does that make?! Instead a million dollars will be spent and not a single child will be educated with those funds,” Deborah laments.

Have you or someone you know had to fight a similar battle for inclusion? Are you frustrated that we’re still fighting this fight more than 30 years after the Individuals with Disabilities Education Act (IDEA) was passed? Tell me about it below.

 

Letter to My Son’s New School

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A parent is often a child’s best advocate. We usually know our child’s history and potential for learning better than anyone else. But too often, when it comes to a child’s Individualized Education Plan, parent concerns are not inserted into the conversation or official record.

The Individuals with Disabilities Education Act (IDEA) and the recent Supreme Court Case, Endrew F., stresses the importance of parent participation at the IEP table. Parents are supposed to be equal partners of the IEP team, but often the IEP document is skewed to the school district’s point of view.

Read Related Post: Endrew F. In Action at the IEP Table

To ensure your point of view is injected and carried out, include a Parental Statement every year. Attached this letter and a bulleted list of concerns to your child’s IEP. You can even have them copy and paste your input into the online IEP form. There’s no reason why they can’t. Read the one I sent to my child’s new school, in a new state. Your letter could talk about the progress or lack of progress your child has made in and out of school since his/her last IEP.

Feel free to use my format, and change it to your child’s situation.

Parental Statement for Troy

To Whom it May Concern:

Our 5-year-old son, Troy, is a congenial, kind, and bright young boy. We’re nervous about him starting kindergarten, and we expect he will be too. Troy has Down syndrome, and although our expectations for him are the same as his typical twin brother, Hunter, we fear that well-meaning community members may have little to no expectations for him. We expect that Troy will be fully included in the academic and social aspects of k-12 education with proper supports. Our long-term goal is to have Troy graduate high school with a regular diploma, prepared for post-secondary education or integrated, competitive employment. With the national graduating rate for students with disabilities around 50%, and unemployment at 80% for people with disabilities, this may seem like an impossible goal to reach. But we understand that the law supports placement in general education first with supports, and all the research proves it works. We’re betting on our son, because we know he’s capable of contributing meaningfully to his community.

My husband is an emergency medicine doctor with the United States Air Force, and this is the third state Troy has lived in in his short life. I stay at home, as well as advocate for other families in the special education process. The move across country is sure to be tough on Troy. He has a hard time with change. He thrives on routine and clear expectations. We’ll try to ease the transition with social stories, and keeping our daily routines. We expect that kindergarten transition will be hard as well, but Troy loves school. If proper transition supports are set up and carried out with fidelity, we know that he will do well.

Troy has been in an inclusive educational setting since right before his 3rd birthday, and has received early intervention since birth. He and his typical twin brother have shared the same teacher for three years in an Ohio public preschool. The class was fully inclusive, but Troy often had the most significant disability in the preschool class each year. Even so, he did very well in this setting, and exceeded teachers’ academic and social expectations. Speech and OT were pushed into the preschool class, and Troy left Ohio well prepared for kindergarten. He knows how to write his first name (albeit messily), use scissors, color, identify all his letters, over 20 sight word recognition, one-to-one correspondence from 1-10, patterning, and much more. Even more important, he understands the routines and expectations of a classroom, and how to socialize with other students. To gain these skills, Troy needed explicit teaching and specific support in the general education classroom.

Although Troy has no medical problems, he has been diagnosed with Childhood Apraxia of Speech. Using push-in speech services, as well as private speech therapy, Troy has grown by leaps and bounds when it comes to functional communication. Troy is saying many more novel phrases without prompting. I can understand most of what Troy says, but strangers often have a hard time understanding him unless the conversation has context or visual clues. Troy does have many common phrases (like “Yes, I do” or “I not do that again”) that are very intelligible. Often practicing functional phrases, with visual cues, that will be used often in the classroom is the best way to improve Troy’s intelligibility.

Positive behavior supports work best for Troy. As you know, behavior is communication, and Troy is always trying to communicate something. He loves attention, and will work hard to gain your attention even if it’s negative in nature. Troy doesn’t have a mean bone in his body, so most of his problem behaviors are attention-seeking in nature. The few behavior issues Troy had in preschool were remedied with continual visual cues or giving him positive attention. Some issues included eloping to his favorite therapists office. Teachers solved this by putting a “stop” sign at the classroom door, and pushing in speech therapy instead of pulling it out. Troy loves circle time, and during free play he would often want to take down the pictures of his classmates, and use the teacher’s pointer to look at them. This issue was solved by creating his own book of classmates’ pictures and giving him his own pointer. Troy loves to feel helpful, and be a leader in class. Troy also needed to explicitly be taught classroom play-based skills, and will likely need help with this in a new classroom.

Read Related Post: 3 Words That Will Transform Your Next IEP Meeting

We’d love for Troy to have an experienced, yet open-minded kindergarten teacher. Someone who has high expectations for our son, and empathy for our situation. I taught middle school and high school students before I stayed home with my twin boys, so I understand the challenges of meeting the needs of every child. Still, we know the general education teacher is the content expert, and the best teacher to serve our child, with support from special education teachers or paraprofessionals. We know his teachers will need a lot of support. I hope to advocate for Troy’s teachers, and volunteer weekly.

We have high expectations for our son and the school he attends. We expect that his IEP will be standards based, and include all the accommodations and services he needs to make progress in light of his disability. We want IEP goals that are appropriately ambitious, and ensure that he is exposed to the same content as his twin brother. I will lean on school personnel as the experts in content and specially designed instruction, as I hope they will lean on me as the best advocate for Troy. I’m excited to work with Troy’s teachers to successfully include him in general education with supports. I know this will not only have a positive impact on Troy, but also the other students in the class who will one day be teachers and employers who will remember Troy and hopefully work to change the current dismal outcomes for people with disabilities.

We consider this letter part of Troy’s educational record, and the IEP document incomplete without this letter attached. I appreciate your time and consideration! I look forward to working with you!

Thank you,

Courtney

Everything I Need to Know About Inclusion I Learned in Preschool

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The sign over my twin sons’ preschool states: “Where Wonder Begins.” I was filled with euphoria reading those words three years ago, when the boys were starting preschool just shy of 3-years-old. I believed I had hit the jackpot. An inclusive public preschool for my son with Down syndrome right out the gate. A place where he would not only belong, but would thrive in “wonder.”

My husband always giggles when we walk past the sign for an IEP meeting. He jokes that no sign could ever match my idealism and pragmatism of inclusion for my son with Down syndrome. He’s right, of course.

Read Related Post: Building the Perfect IEP

Don’t get me wrong, my sons’ preschool experience was great. Attending their third and last preschool performance and last day festivities, I couldn’t help but sit in wonder at how much they’ve grown. Both are equally ready for kindergarten.

But these past three years were a huge learning curve, mostly for myself. I went into my sons’ preschool experience with one notion of inclusion and advocacy, and left with a completely different one. I assumed if you found the right school or great teacher, that everything else would fall into place. Inclusion done right, is a lot more than that. Most school’s have a system in place for special education, and they’re not eager to provide a different path unless you politely push. If you don’t speak up and ask questions, your child might not get what they need for their “individualized” education plan. You have to keep the lines of communication open with the IEP team, learn to collaborate and compromise, and stand firm on specific ideals that you hold dear.

Preschool is a time of exploration for children. I used the time for the same purpose when it came advocacy. Here’s what I learned:

1. Every school, teacher, and parent’s definition of inclusion is different: When looking for an inclusive school, don’t believe just one source. I made that mistake when we move to the area. A few parents with children with Down syndrome said this district was the most inclusive. I soon learned that, although the preschool is half typical kids and half kids on IEPs, K-12 is much different. Most students with significant disabilities spend the majority of their day in a self-contained class, starting in kindergarten.

Talk to other parents, but also look up the school’s mission statement, call the district special education director and ask about the district’s policy on inclusion, tour the school and ask about the continuum of placement. You could even look at Due Process results for the district to see if they are violating Least Restrictive Environment regulations. I did all of this for our new school, in a new state.

Read Related Post: A Letter to My Son’s New School

2. Use this time of exploration as on-the-job training: Even though I was an educator and sat in on many IEP meetings, I had never sat on the other side of the table as a parent. I soon realized that I had a lot to learn about the IEP process. At first, I focused solely on building strong IEP goals for my son, thinking that was the ticket to academic and social success. I soon realized that IEP goals only scratched the surface of access to a truly inclusive experience. Present levels of performance, parental concerns, specially designed instruction, accommodations, progress monitoring…I essentially ignored all of these things the first year of preschool, but soon realized that the only way my son was going to meet his IEP goals was to ensure those other parts of the IEP were clear and strong.

I ended up taking a year-long special education advocacy course from the Council of Parent Attorneys and Advocates (COPAA), to learn the ins and outs of the IEP process. I don’t regret it! I would encourage you to take workshops and read books on inclusion, as well as the IEP process. Knowledge is power! What you’ll find out is parents have A LOT of power when it comes to the IEP process. Use it to your child’s advantage.

3. Failure is not fatal in preschool: Research shows preschool leads to better academic and social gains in kindergarten and beyond, in part because children have a chance to practice in the process of school. The pressure is off in preschool. This is true for advocacy too. Allow yourself to dive deep into the IEP and special education process. Learn all there is to know before your child starts kindergarten, and don’t be afraid to make mistakes.

The beauty of preschool is that you still have time to develop educational expectations for your child and their school. There’s no deadlines, tests, or real pressures to contend with. Enjoy the time with your child, while doing your research. You’ll go into kindergarten having practiced the process, and ready to advocate for what your child needs.

I’m glad I took these three years to play with the idea of inclusion and what I want for the next 13. What is preschool like for your child with a disability? Comment below with your story or tips for other parents.