Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

3 Words That Will Transform Your Next IEP Meeting

by

I’ve been to numerous Individualized Education Plan (IEP) meetings as a parent, and at the end of each one the school counselor hands me a little booklet. Inside are parents’ procedural safeguards under the Individuals with Disabilities Education Act (IDEA). Do you think I ever read that tiny book?

My son is JUST in preschool, I explained to myself. I’m a former educator with a Master’s Degree (like it mattered). I don’t need to read that book. I’ll look up specific questions if I have them, as I tossed it into the trash. It wasn’t until I started a year-long Special Education Advocacy Training through the Council of Parent Attorneys and Advocates that I realized the importance of the booklet and 3 words found inside.

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

I learned that we parents can actually wield a lot of power at the IEP table. It often doesn’t feel like it. Most of the time it feels like the story of David and Goliath; me being the former and the cadre of school officials being the latter. But when things get hot, often parents only need to use 3 words: PRIOR WRITTEN NOTICE.

Parents often think they can shutdown an IEP meeting by refusing to sign the actual IEP. In most states, failure to sign means nothing. In the worst case scenario, an IEP immediately takes effect if you DON’T sign. Your signature doesn’t hold as much weight as you might think. And you can ALWAY revoke your signature… it’s not a permanent thing.

Instead, try using the phrase “prior written notice,” if you disagree with a specific aspect of the IEP process. Prior Written Notice (PWN) means that when a school district adds, changes, or denies educational services to your child, they must explain to the parent in WRITING why the services are being added, changed, or denied. Now, that’s permanent. If the school district is denying your services, they most likely will NOT provide you prior written notice voluntarily – YOU WILL HAVE TO ASK THEM TO DO IT! If you request something be added to your child’s IEP, likely you’ll need to make that request in writing and ask for written acceptance or denial of the request in the PWN.

Read Related Post Here: 3 Steps to Get Organized For Your Next IEP Meeting

This came in handy when my own son wasn’t even working on a functional communication goal we had set six months prior. I asked at Parent-Teacher Conference why the goal had yet to be addressed. The speech pathologist and teacher said they still had time. I argued in person and then via email for more speech time in the classroom to work on the skill. They politely pushed back. Then I called a meeting and used those 3 magic words, along with presenting research to make my case for more time.

Suddenly the IEP team took the matter more seriously. We walked out of the IEP meeting that day with more than double the speech time in the classroom. I was actually shocked by the lack of pushback after just threatening the use of “prior written notice” and presenting research. I was creating a paper trail of possible denial of services, and the school didn’t want that.

I can’t emphasize enough how important it is to know your rights under IDEA. Next time your at your child’s IEP meeting and they ask you if you’d like a copy of your procedural safeguards, say “Yes! I like to reread it often.” The tone of your meeting might just change right then and there.

Have you ever read the procedural safeguards booklet? Are there any times you have requested “prior written notice,” or now wish you had? Tell me about your journey below.

Learn more about Prior Written Notice and your procedural safeguards here.

Teen with Down Syndrome Wins Inclusion Case in Federal Court

by

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

by

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

by

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.

 

Class of 2031: Yes, My Son with Down Syndrome Can Go to College

by

With over 260 college options, the future is looking bright for students with intellectual disabilities.

I can see the headline now: “Twin Brothers Graduate Side-by-Side, Accepted at the Same College”.

I can see my precious boys, now men, stepping onto the platform hand-in-hand, receiving their diploma’s together.

The year is 2031, and it’s the culmination of years of hard work, as well as the beginning of years of hard work to come.

But why is this even news, you ask. After all, twins graduate side-by-side every spring.

What if I told you my twin boys are so unique that the odds of recreating another birth like them is 14 in a million! I know, I know…I should play the lottery.

But this alone isn’t even newsworthy.

The real headliner here is that one boy is neuro-typical, while the other has Down syndrome.

And the truth is, no one expects much out of the latter. No one, except me!

My twin boys will begin kindergarten in a few weeks, and I’m already plotting how to send them to college. Of course, like most parents, my husband and I have done the dutiful task of setting up a 529 College savings plan for our typical son and daughter.

But doing the same for Troy, who has Down syndrome, would put his future SSI Medicaid benefits at risk. Luckily for Troy, the Achieve a Better Life Experience (ABLE) Act, was just passed in 2014, and now he can save for college too without losing much needed government assistance. Read more about ABLE here.

So, now to investigate college programs.

I know, we’re 14 years out…What can I say? I’m a bit of an obsessive planner. Ok, ok I’m neurotic. I can’t help it. But my investigation into colleges for my son has amazed me!

Did you know there are over 260 college options for Troy, and other people with intellectual disabilities? And he can receive pell grants, work study money, and scholarships to help pay the tuition.

https://www.youtube.com/watch?v=auIYOb_rptQ

The evolution to better higher education opportunities for people with intellectual disabilities really took off with the reauthorization of the Higher Education Opportunity Act of 2008. But keep your eyes and ears peeled (and your legislator on speed dial), because the act is supposed to be reauthorized again THIS YEAR!!! We can’t go backwards.

And on closer look, I noticed that these college programs are not created equal.

They range from Syracruse’s InclusiveU Program (learn more here), which boasts a 4-year certification program where students take the same exact classes as their neuro-typical peers and live with those peers too….to others where students are completely segregated and only learn life skills. Unfortunately, the vast majority of these college programs fall into the latter category.

Now, I’m not complaining. At least higher education, any higher education, exists for my son. But I’m not going to fight for 13 years for my son to be included with his typical twin brother in primary and secondary education, just to turn around and fight again in higher education.

We need to be advocating for more programs like InclusiveU. We also need the Higher Education Opportunity Act passed with more, not less funds for inclusive higher education.

My hope is by the time Troy and Hunter graduate high school in 2031, most higher education programs will be fully inclusive and lead to competitive paying jobs.

Visit thinkcollege.net to find out what college programs are in your state, and start advocating for full inclusion.