Fostering Acceptance in the Classroom

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:

July 24, 2018July 24, 2018

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

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.

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.

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.

July 12, 2018July 12, 2018

Letter to My Son’s New School

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

June 29, 2018June 29, 2018

How to End Organ Transplantation Discrimination in Your State

Did you know that people with Down syndrome and other disabilities face significant barriers to life-saving organ transplants? I was shocked when I first heard that this was a “thing.” How could anyone decide one life is less worthy than another solely based on their disability?

That’s why a little over a year ago I called my state representative, Niraj Antani, and asked him to draft a bill giving greater legal protections for life-saving organ transplants to people with disabilities. Ohio House Bill 332 was born, and today Ohio Governor John Kasich signed the bill into law. You can read the bill here.

As the bill was being drafted a year ago, I learned about a story of organ transplant discrimination just north of where I live in Sidney, Ohio. Little Ellie’s mom, Jackie, was told shortly after she was born that Ellie couldn’t receive the heart transplant she desperately needed to stay alive because she has Down syndrome. Read her story below.

Read Related Post Here: Little Ellie is Denied the Heart She Needs

As soon as I connected with Ellie’s mom Jackie Ward, I knew she had to share Ellie’s story with Ohio legislators and the world. Ellie would be the change-maker! Jackie was hesitant to share at first, but over time she realized the impact Ellie’s story could have on the passage of H.B. 332. Ellie’s story had an huge impact on the Ohio House members I spoke to, who were all equally as shocked as I was that this was indeed a “thing.”

Read Related Post Here: Ending Organ Transplantation Discrimination

The Americans with Disabilities Act actually provides broad protections for individuals with disabilities, but there’s no specific protection for access to organ transplantation. In fact, a group of 30 Republican and Democratic U.S. Representatives signed a letter just last year to the Department of Health and Human Services asking them to issue federal guidance to protect individuals with disabilities against organ transplantation discrimination. Unfortunately, nothing came of that letter. That’s why states need to act.

If you’re interested in advocating for a similar bill in your state I would start with the related posts above, as well as the following toolkits: ASAN Organ Transplantation Toolkit and NDSS Organ Transplantation Toolkit

I would also encourage you to watch testimony from Ellie’s mom below, as well as an Oregon mom who’s non-verbal Autistic son was refused a heart transplant in Oregon and ended up leaving the state and getting the transplant done in California. Both are extremely moving and puts a human face on an otherwise dry bill. Watch the Oregon mom starting at 38 minutes and 51 seconds here.

Ohioans aren’t alone in their fight against organ transplant discrimination. Seven states (Pennsylvania, Oregon, Maryland, California, New Jersey, Massachusetts, and Kansas) have already passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. One more (Delaware) currently has a bill working its way through the state legislature.

In most states, there are no checks and balances on the decisions transplant centers make.

Without regulations, personal bias and preconceptions can play a role in life-or-death decisions. Often doctors cite two reasons for discrimination based solely on disability:

Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op support).
Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.
Luckily, we have faced no push back from the health care community for our bill here in Ohio.

Do you believe everyone, regardless of disability, deserves access to life-saving organs? Are you interested in advocating to end organ transplant discrimination in your own state? Comment below and I’ll be sure to get in touch with you.

June 27, 2018June 27, 2018

Disable Poverty

So, we just opened an ABLE Savings Account for our son, Troy.

It took about 10 minutes, and cost us nothing other than what we plan to save for our son.

What is an ABLE account you ask?

Let me explain by first sharing this shocking statistic I recently discovered while advocating in Washington, D.C., and at the end of this blog post I’m going to ask you to do your part to make a change in millions of people’s lives!

Recent studies found 78% of eligible adults with intellectual disabilities are NOT WORKING!

Just take that in for a moment. Less than one third of people with intellectual disabilities have a job! That’s almost 50% lower employment rate than people without disabilities.

No job. No work relationships. No expansion of skills after high school. No savings. No self-reliance. No self-worth.

It’s no wonder then that poverty and disability are bedfellows. Millions (1 in 3, in fact) of people with disabilities are stuck in an endless cycle of poverty. This is historically by design…

Before Achieve a Better Life Experience (ABLE) Act, a person with a disability (who benefits from Supplemental Security Income or SSI) could only have $2,000 to their name. Any more, and they would forfeit any government assistance — in healthcare, job training, transportation, and independent living services. This has had a chilling effect on jobs for the disabled.

Even if they can work, why bother when they can’t have more than $2,000 to their name? For those that do find jobs, some are paid less than minimum wage and/or work in sheltered workshops.

But since the ABLE Act passed in 2014, things are looking up!

The pocketbooks of people with disabilities will, for the first time, have the opportunity to grow without the threat of losing the government assistance they need to stay self-reliant.

So, what can you do to help lift up those with disabilities, and nudge them towards financial independence?

What You Can Do Today:

1.First, take the pledge! Disable Poverty is an amazing organization that’s trying to spread awareness about poverty in the disability community.

Visit their website at www.disablepoverty.org to take their pledge to end poverty in the disability community. The website gives facts about the relationship between poverty and disability.

Share this with your friends on social media.

You can do this even if you don’t have a loved one with a disability.

2. Second, open an ABLE account if you’re a self-advocate or your loved one has a disability.

It’s essentially like a 529 College Savings Account. You can save up to $14,000 a year, and the person with a disability will not lose government services as long as the account does not surpass $100,000.

Adult self-advocates can use their savings on anything related to improving their health or independence, as well as furthering their education or employment.

Even before your child becomes an adult, you as the legal guardian can use the savings account for anything disability related: medical bills, therapy, assistive technology, orthotics, etc.

There are a lot of myths surrounding ABLE accounts. Visit here to get the TRUTH!

Twenty-seven states have started ABLE account programs, and most allow non-residents to sign up. Since our family is active duty military and move a lot, we had no problem shopping around for the state with the best deal.

We chose Tennessee’s ABLE plan because there’s no start up fee or annual fee, and it has the most investment options at the lowest cost.

The down side of Tennessee’s plan is no debit card option, which isn’t a problem for us since we plan to have Troy use the money as an adult. Check your state too, because often they have a state income tax credit if you’re an in-state resident.

Visit the ABLE National Resource Center to compare state ABLE plans and choose which option is best for your child.

3. Lastly, call your legislator!

There are several bills in Congress right now that hope to improve the ABLE Act.

The one most salient to the Down syndrome community is the Able2Work bill, which would allow Troy and others with disabilities to save even more in their ABLE account as long as they’re employed. They can save up to $26,500 a year, or the national poverty rate (although the $100,000 SSI limit still applies).

A second improvement bill would allow parents to rollover a 529 account into an ABLE account. This is fantastic for all my mom friends whose child had a later diagnosis, like Autism.

The last improvement bill increases the age of disability onset from 26 to 46 (or half way to retirement age).

Sign up for advocacy alerts related to the ABLE Improvement Bills here, and make sure to call your legislator and tell them to approve these bills.

All of this is integral to pushing people with disabilities out of the poverty cycle. They must be able to work and save their money with pride. And Troy’s on his way to doing just that!