Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

Back To School Parent-To Parent-Guide To Inclusion

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It’s that time of year. Back to school shopping, first day of school social media posts, and well planned out lunches. But if you’re a parent to a child with a disability, you have the added anxiety of IEP meetings, checking in to see if your child and his teacher have all the needed supports, and wondering if your child will be meaningfully included.

Start the school year right by sharing information about your child, as well as what inclusion means to you. Being intentional about disability acceptance could be the key to friendships with typical peers in the general education classroom. Parents of typically developing classmates may not know what to say to their child about your child’s differences. They may even be apprehensive about having a child with a significant disability in their child’s class.

Dispelling any myths and educating parents about the benefits of inclusion is a great way to start out the school year.

I got you covered. Below is a parent-to-parent guide that you can print and share. Also included are tips to create your own customized “all about me” page highlighting your child.

Read Related Post: 3 Words That Will Transform Your Child’s IEP Meeting

I suggest you wait until the second or third week of school to share these resources with classmates’ parents. You want parents to spend time with these documents, and too much information is sent home at the start of the school year. This is a conglomerate of information I’ve seen and learned over the years as a non-attorney special education advocate. Feel free to print and share the PDF version below:

Parent-to-Parent-GuideDownload
Spanish version Parent-To-Parent GuideDownload

Read Related Post: Promoting Inclusion through Universal Design for Learning

If you’re looking for an easy way to create a customizable “All About Me” page look no further than www.canva.com. Canva’s image-driven bold templates are sure to catch anyone’s attention. Check out the one I made for my son a few years ago:

Added Bonus: I have my son hand-deliver this to teachers during the first IEP meeting or Back to School Night before school begins. He also shares his most current work. This gives teachers a glimpse of a highly-capable student, instead of the weakness-based legal documents they’re used to reading about students.

How do you introduce your child and the idea of inclusion to teacher and classmates? Share any resources in the comments section below.

From Awareness to Inclusion this October

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October is Down Syndrome Awareness Month, and Disability History Month in the state of Washington. As my journey with my own son with Down syndrome has evolved I realize that I want more than awareness. I’d love for our society to move from awareness and acceptance to true inclusion.

I think it’s important that we move past simple awareness campaigns to something that persuades actual action. But how? How do we raise awareness and persuade people to truly accept people with disabilities for who they are?

Outside of the classroom, there’s many small, yet powerful actions you can take. Advocating for laws that end sub minimum wages, and promote community inclusion can be as easy as sending a letter to your representative or showing up to a rally. Another powerful step towards equity is working with people with disabilities to understand how they want to be respected and supported. Always question yourself and others. Do you or people around you still harbor ableist feeling like pity or inferiority of people with disabilities? Learning from these moments and moving forward is an important first step towards acceptance, and something I still practice and struggle with sometimes. We should always invite people to change and evolve in their perspective; that’s what advocacy is about.

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

Inclusion Activities in Grade School

Trying to promote acceptance will take more time and thought than awareness campaigns but they’re worth it. I invited a local self-advocate with a disability to come talk to our entire school body about acceptance. I hope that this will make a lasting impact.

During the COVID pandemic you can modify these assemblies by having local members of your community with disability submit recorded videos that you can then share during the school’s morning announcements. This month I organized a number of different videos for my son’s school, including one from our school’s Physical Therapist where he introduces his service dog and explains how the dog is used to help students with disabilities. My own children even asked to create a video to talk about inclusion.

You can also reach parents through your school’s newsletter. I’ve created a Parent-to-Parent Guide that talks to parents about disability rights, inclusion, and tips on how their child can be an ally to classmates with disabilities. You can use my guide with proper citations.

Parent-to-Parent-Guide for October Disability History Month Guide-2021Download

Supports for Teachers:

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:

“What Happened To You?” by James Catchpole: A great book to introduce the idea of disability pride, and gently remind students that a person with a disability is not a lesson to be learned. The book reminds readers that people with disabilities want the same things as everyone else: belonging and inclusion. Pity has no place here.

“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.

“Just Ask: Be Different, Be Brave, Be You” by U.S. Supreme Court Justice Sonia Sotomayor: Did you know Justice Sotomayor lives with Type 1 Diabetes? She talks about her own life as well as the lives of other children with disabilities or health conditions in this beautiful children’s book. She uses the analogy of a garden to show how people’s differences can be their superpowers.

“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.


“All the Way to the Top: How One Girl’s Fight for Americans with Disabilities Changed Everything by Annette Bay Pimentel: A phenomenal new book that looks at the Disability Rights Movement and the advocacy effort to get the Americans With Disabilities Act passed. It follows one young advocate that showed Congress how important access is for people with disabilities. This is a great book for 2nd or 3rd graders, who can start thinking about how they could advocate for people with disabilities in their own communities.

The Girl Who Thought In Pictures: The Story of Dr. Temple Grandin by Julia Finley Mosca: “If you’ve ever felt different, if you’ve ever been low,
if you don’t quite fit in, there’s a name you should know…Meet Dr. Temple Grandin—one of the world’s quirkiest science heroes!” When young Temple was diagnosed with autism, no one expected her to talk, let alone become one of the most powerful voices in modern science. Yet, the determined visual thinker did just that. 

Washington State Governor’s Office of the Education Ombuds (OEO) created the One Out of Five Project to promote disability pride and inclusion through simple lesson plans. You can get those here. The Governor’s Council for People with Disabilities also 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:

“I Have A Dream…”

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“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.

Back-to-School Checklist during a Pandemic

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Whether your child with a disability is going back to in-person learning, a hybrid model, homeschooling with itinerant services at home, or completely virtual our back-to-school checklist will be the same. It won’t include the typical 3-ring binder and box of crayons. Instead, it will require vigilance and continued advocacy on the part of parents and students.

Below the checklist you will find a list of resources specific to learning during the pandemic from numerous disability rights organizations.

Back-to-School Checklist during the Pandemic:

  1. Take the First Step: Don’t wait for your child’s IEP team case manager or special education teacher to contact you. Call or email before school begins, request an IEP meeting, and ask how your child will receive all needed services and supports even during the pandemic. Many students with disabilities did not receive the services outlined in their IEP this past spring. Many parents became solely responsible for their child’s specialized instruction, therapies, related services, etc. This is not legal under the Individuals with Disabilities Education Act (IDEA) even during the pandemic, and cannot happen again this fall. Our children cannot afford to lose out on needed services again this new school year. Ask for a Prior Written Notice detailing, in writing, how the school intends on delivering these services virtually, in the home, or in-person during alternative school scheduling.
  2. It’s All About the Data: Your iPhone isn’t just for adorable pictures of your child. It can be a great tool for monitoring your child’s progress at home. With a majority of students around the country doing at least some learning virtually in the home or in day cares, parents and caregivers are now the experts in progress monitoring. You can use short video clips to prove that your child is not accessing the grade-level curriculum through synchronous (live) online instruction. You can use your iPhone notes to write real-time details about behaviors, task avoidance, successes in math, struggles in reading, etc. You can also request frequent data from private providers like tutors, therapists, etc. These experts can lend credibility to your own data. Write down what works and what doesn’t work. Track regression and progress. It’s important to videotape or write these incidents as they happen, because as the old adage says: “if it’s not in writing, it didn’t happen.” This parent-led progress monitoring can be used to make the argument for compensatory education.
  3. Know Your Child’s Rights: Do not sign any document that waives your child’s right to a Free and Appropriate Education (FAPE) now or ever! The Department of Education and U.S. Congress have not waived any rights under the Individuals with Disabilities Education Act (IDEA) during the COVID-19 school closures and alternative learning models. Many advocates and attorneys recommend the child’s IEP remain untouched during this time. Many states have created temporary COVID-19 learning plans to supplement, but not supplant a child’s IEP. I would argue that your child should receive all the services and supports outlined in their pre-COVID IEP even during this time. In practice this will likely take creativity on the part of school districts and courage on the part of parents to push school districts to uphold their legal responsibility.

Resources Related to Educating Children with Disabilities during the COVID-19 Pandemic:

I will add to this resource page as I learn of new resources for learning during the pandemic.

Remote Learning Strategies This google doc has a list of apps and website and platforms that teachers can use to make virtual learning more inclusive and interactive.

Educating all Learners Alliance a National Network of Educational Experts created this resource library to help teach all learners during the pandemic.

TIES Center The National Technical Assistance Center on Inclusive Practices for students with the most significant disabilities includes blog posts on the left hand side of the website. The latest blog posts include specific strategies for including students with disabilities in virtual learning during the pandemic. Here’s my favorite blog post to prepare for learning during the pandemic: The 5C Process

The 12th Annual Summer Leadership Institute has gone virtual, and this year’s speakers talk a lot about inclusion during the pandemic. The tickets are discounted at $150. I’ve enjoyed a lot of the webinars.

Council of Parent Attorneys and Advocates is making their annual conference virtual and has created weekly webinars related to learning for children with disabilities during the pandemic. The webinars are recorded and free to COPAA members.

The Department of Education has released a Q-and-A outlining the school districts’ responsibilities to children with disabilities during the pandemic.

Reopening Washington State Schools 2020: Special Education Guidance Check your state department of education website for more specific information for your state

A Day In Our Shoes has a great selection of COVID school closure related topics.

Call to Action: Tell Your Congressmen No IDEA Waivers During COVID-19 Pandemic

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More than 54 million American school children are learning at home right now. Seven million of those students have disabilities. Since the outbreak of the Coronavirus in March, 45 states have ordered schools closed, and 15 states are keeping schools closed until the end of the school year. That list will surely grow as the virus peaks (find an updated list here).

In two weeks, Department of Education Secretary, Betsy DeVos, is set to offer guidance to Congress on whether or not to issue waivers that could postpone or eliminate school districts’ responsibility to provide a free and appropriate education to school children. It’s important to note, DeVos cannot waive educational disability rights; only Congress can do that. DeVos does have the power to waive rights and responsibilities under general education laws though and already has. Read more here.

Parents of children with disabilities have 2 very important tasks during school closures:

  1. Write and/or call your Congressperson THIS WEEK. We don’t have much time. Share your child’s personal story with distance learning during the pandemic, and tell them educational waivers are not needed. The law already provides amendments and timeline extensions when there are exceptional family circumstances. School districts and parents need to work collaboratively to decide if extensions should happen on an INDIVIDUAL basis. We need to urge Congressmen to let the law do its job- NO WAIVERS! Read why and how below.
  2. Document, Document, Document! You know the old adage: if it’s not in writing or on video, it doesn’t exist. You should be taking data of your child’s progress, or lack of progress during this time. Take baseline data now (a video of them reading, writing, doing math, anything related to their Individual Education Plan (IEP)). Keep that documentation up as school closures continue. If your school won’t do teletheraphy, and you decide to pay out of pocket for private teletheraphy make sure you document it. Read why and how below.

The Department of Education released guidance on March 21, 2020, stating that school districts should provide distance learning to all kids during school closures and shouldn’t use federal disability law, like the Individuals with Disabilities Education Act (IDEA) or Section 504, as an excuse not to. School districts will need to be equitable and innovated in their plans to do distance learning while Americans are social distancing. Read more here.

This is good news for disability advocates. That means virtual IEPs, evaluations, and teletherapies should be happening. School district should be lending out computers and providing wifi to those who need it. Most importantly, these distance learning opportunities should be individualized for your child with a disability. A lot of school districts across the country are already providing these learning opportunities. Why would we stop these collaborative and innovative efforts? All children deserve these rights and access to distance learning. Learn more about how school districts are providing access and best practices for distance learning here.

Read Related Post: What To Do When Your School Doesn’t Believe or Understand or Believe in The Least Restrictive Environment

The COVID-19 pandemic highlights issues of equity unlike any other crisis we’ve seen. The students who are likely to fall behind during school closures are those who are poor or have disabilities. Parents should be reasonable, but school districts should also be working diligently to provide equitable access to distance learning. Don’t be afraid to ask for services and accommodations, when all students are expected to learn online. This is why advocating against educational waivers is so important.

Some organizations, like the National Association of State Directors of Special Education (NASDSE) and the Council of Administrators of Special Education (CASE), are asking DeVos to provide a 45 day extension, once schools are back in session, for all IDEA timelines. NASDSE and CASE are also asking for flexibility in school districts’ documentation of FAPE, data collection, and corrective action plans. This would impact preschool programs, state complaint and due process, initial and reevaluations, as well as the development, review and revision of IEPs. Read their March 31, 2020 letter here.

Special Education advocates are strongly against this. On April 3, 2020, the Council of Parent Attorneys and Advocates (COPAA) sent a letter to DeVos reminding her that the Department of Education on March 21st already appropriately responded to the crisis, and should “fully uphold all tenets and requirements of IDEA and 504.” The letter goes on to state that IDEA already provides flexibility for individualization and collaboration between districts and parents, and “students with disabilities cannot afford the lengthened delay that would result from a blanket pause in timelines.”

NASDE did write a joint statement with COPAA on March 23, 2020, that all rights and responsibilities under federal disability law should remain. Now that organization wants flexibility in the law. But COPAA and other special education advocates are arguing that IDEA already provides needed flexibility and collaboration between parents and school districts to provide a free and appropriate education at this time.

So, here’s where you come in. Please write to your Congressperson TODAY! Find your representatives and their contact information here.

Tell them your child’s story regarding COVID-19 and school closures. Please share good examples of how your school district is already providing a Free and Appropriate Education through distance learning. Urge your Congressperson to issue NO WAIVERS during or after school closures. Remind them that federal law under IDEA already provides flexibility in timelines and services under exceptional family circumstances. Send your email soon. DeVos is set to issue her recommendations in two weeks. Read an example of a good letter here and here. Make sure you personalize your email.

Lastly, start collecting data on your child’s progress and/or regression during this time. The IEP document allows for parent training. If you don’t know how to take data, request that your school teach you simple ways to take data. And easy way to do this is to take video of your child now and and throughout the school closure time. Make sure you timestamp any data entries. Also, if you’re paying for teletheraphy or other private distance learning make sure you receive invoices and data from those private providers. You may be able to advocate for compensatory education upon return to school to make up for any lost learning.

If you’re busy with homeschooling now, use this simple email format:

Dear (Enter your Congressperson’s name):

IF YOUR CHILD IS RECEIVING APPROPRIATE SERVICES DURING THIS TIME: I’m writing to you today to tell you about my child with a disability’s experience with distance learning during the COVID-19 school closure, and urge you to uphold all of the tenets and responsibilities of the Individuals with Disabilities Act (IDEA) even during this time. My child is receiving needed accommodations and services during distance learning. I’m working with my child’s IEP team virtually, and we hope that our collaborative will ensure my child continues to make meaningful progress. Many school districts around the nation are providing innovative and equitable ways to meet the needs of students with disabilities. My child and other children across the nation cannot afford more delays that would come from federal timeline waivers. Soon, Department of Education Secretary Betsy DeVos will issue guidance regarding waivers under IDEA and other educational laws. I urge you to resist any call for waivers. IDEA already provides this flexibility. Thank you for your time and consideration!

IF YOUR CHILD IS NOT RECEIVING APPROPRIATE SERVICES DURING THIS TIME: I’m writing you today to tell you about my child with a disability’s experience with distance learning during the COVID-19 school closures, and urge you to uphold all of the tenets and responsibilities of the Individuals with Disabilities Education Act (IDEA) even during this time of crisis. Although my child with a disability is not receiving all of the needed accommodations and services during this time, I’m convinced from other examples of success in distance learning across the nation that I can work collaboratively with my child’s school district to ensure meaningful progress is made. My child and other children across the nation cannot afford more delays that would come from federal timeline waivers. Soon, Department of Education Secretary Betsy DeVos will issue guidance regarding waivers under IDEA and other educational laws. I urge you to resist any call for waivers. IDEA already provides this flexibility. Thank you for your time and consideration!

Is your child’s school district providing equitable distance learning opportunities? Comment below with your experience during COVID-19 school closures.