Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

How to Vet College Programs for Students with Intellectual Disabilities

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Vineet Narayan graduated from high school last spring and during his gap year he’s on the hunt for a college program that fits his needs. Searching for the right college program is daunting for most students, but Vineet’s mom, Nithya Narayan, says sending her son with Down syndrome to college adds a few extra concerns.

Vineet Narayan

Although the college search process has been surprisingly typical in many ways, Narayan says “It did seem surreal to hear from schools and acknowledge the gap between having no access to curriculum and having to audit college classes, which seems incomprehensible. So I attended the State of the Art conference to see if he could really attend these programs without barriers. We want him to have the liberty to choose classes and make a career path, which is what the typical students do. As I was researching, some of these programs have definitive classes that they have to take which is not what we want.”

College programs for students with Intellectual and Developmental Disabilities (IDD) have increased by 73% in the last decade. Currently there’s around 260 programs across the nation. These programs range from fully inclusive community colleges or 4-year university settings with on-campus living, to segregated programs on college campuses. There is much to celebrate with this tremendous growth of post-secondary opportunities for students with IDD. But compared to the 7,000 college programs for typical college students across the nation we’re really still in the infancy of this movement.

Read Related Post: College Scholarships for Students with Down Syndrome

I’ve written recently about the good, the bad, and the ugly of these college programs. Although there is federal regulations for the few programs that receive federal funding (about 25 programs), the vast majority receive no federal or state oversight. It’s up to the college and increasingly parents to self-monitor the efficacy of these programs. So, how can parents and students ensure the program they choose lives up to their expectations?

“Parents and students don’t know what they want until they don’t get what they want. Students with Intellectual Disabilities don’t often go to college night like their typical peers. They go to transition fairs instead. There needs to be a whole mindset change starting in high school,” explains Think College Co-Director, Meg Grigal.

Think College is a great place to start your search. Parents and students can search for programs using an interactive map, and check out the organization’s new “How To Guide on Conducting a College Search.” Grigal says parents should share this with your child’s high school transition team to better prepare for that next step.

But don’t stop there! Jennifer Luebke and her 19-year-old son, Antonio, had to renew his college search after the program he was attending failed to keep promises of at least a 50% inclusive course load (As of February 2019, the matter has been resolved to the satisfaction of all parties). Antonio left the program after a year, and now Jennifer has many more questions for the next college Antonio attends. Even though your student may be looking for a different type of college experience, her questions could help guide your inquiry and get you thinking about what questions to ask.

Read Related Post: Bethel University Fails to Keep Promises of Inclusive Education for Students with Intellectual Disabilities

“We developed key questions that will hopefully reveal answers that go beyond the self-reported information on Think College and the college’s marketing materials,” explains Luebke. Parents from the Facebook Group “Families Think College” also chimed in with other questions that are added to Luebke’s questioning below:

  1. “Academic Inclusion: What courses (if any) are inclusive? Provide a list of catalog courses that are available for students with IDD to take where the coursework is modified and where they receive in-class and out-of-class academic support. Do you have courses where typically-abled students are also present, but their role is different from a student with IDD (e.g. as a mentor, co-enrolled as a lab to help students with disabilities, etc.)?
  2. Residential Inclusion: Do you have a policy that prevents a student with IDD from being roommates with a typically-abled student?
  3. Social Inclusion: Tell us how students with IDD are intentionally and regularly included in campus social activities?
  4. Job Training and Internships: How will you leverage his strengths to provide job training to him? What might a few conversation starters be to help him identify a good job fit? What internship opportunities do you have that might be a good fit for him considering his strengths? What percentage of students are employed after leaving the program?
  5. Parental Involvement: Do you require a student with a disability to be their own guardian? How do you determine what level of communication is appropriate with parents and how do you calibrate it?
  6. Metrics: What metrics do you track and how often do you track them to assess the effectiveness of your program and areas for improvement? With whom do you share your findings? How do you measure and assess each student’s learning and progress?
  7. Membership & Belonging: Are students in your program considered enrolled students in the university? Do they have full alumni benefits when the complete the certificate program? Do you have a separately published student handbook and policies apart from the general student handbook (with some areas where additional support is provided where needed).
  8. Philosophy of Inclusion: What is your program’s definition of inclusion or what is your program’s inclusion statement that guides the program?
  9. Qualifications: What are the program director’s educational background, work experience, and specific qualifications to run this program? Are the professors who teach the courses that students with IDD take qualified university professors? What training have the professors received in universal design? What training do students on campus receive about ability diversity?
  10. Please provide us a list of all students and alumni (and their parents and families) that we may contact to ask further questions about your program.”

Nithya Narayan says a “parent comments section” could provide invaluable real-life reviews of how a program actually operates. She says good programs are out there, if you know how to look. “When typical kids go away they shape their life by being an adult and making decisions on their own for their life, and we are very glad that opportunity is available for Vineet.”

How’s your child’s college search going? What is your child looking for in a program and have they found it? What questions have you asked? Share in the comments below.

4 Resources to Help Teachers Include Students with Down Syndrome in the General Education Classroom

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So, you have 35 years of evidence-based research and federal law behind you. Your child with Down syndrome has a teacher with an open heart and willingness to include him or her. But it’s the actual act of inclusion day in and day out that’s stumped teacher. It’s the “HOW” and “WHAT” to teach students with Down syndrome in the general education classroom that can often be difficult.

Let’s be honest, most general education teachers do not receive the proper training or support to include a child with an intellectual disability in their classroom. I have a Master’s in Education and only took two graduate level classes on special education. I received no hands-on training. So, I can empathize with teacher’s who are at a lost as to what and how to teach our children.

Related: 5 Tips for Including Students with Down Syndrome in the General Education Classroom  

The link above walks parents through 5 tips to help their child with Down syndrome be included. We know parents are the expert of their child, but it’s the teachers that need support. It’s a fact, that including a student with an intellectual disability takes some preparing and a village of support. Although following the law and having an open-heart is half the battle, teachers also need evidence-based resources that they can use tomorrow in class.

Here are 4 resources to help teachers include students with Down syndrome in their class:

1. The National Professional Resources, Inc.

  • I took a fabulous inclusion workshop by Richard Villa this past summer at the National Down Syndrome Congress Convention in Sacramento. He helped me find NPRinc, which is a treasure trove of professional development products for teachers. This is a the “HOW” of teaching students with Down syndrome.
  • Villa just published a quick-reference laminated guide to “Differentiated Instruction in the Inclusive Classroom.” You can find it here. NPRinc. also has hundreds of other books and quick reference guides to include students with disabilities. Look at the “Products by Topic” on the left, or enter “Down syndrome” in the search engine. You’ll find books on teaching students with Down syndrome to read and do math, as well as dozens of other topics.

Related: Federal Appeals Court to Decide if Student with Down Syndrome Can Stay In General Education Classroom

2. National Center on Universal Design for Learning

  • Universal Design for Learning is the wave of the future. This approach takes into account the fact that all students learn in their own unique way. It’s another “HOW” in teaching students with Down syndrome. The National Center on UDL has teacher toolkits and great examples and resources that teachers can implement right away. There’s 3 basic ways to reach all learners according to UDL:
  • Multiple means of representation to give learners various ways of acquiring information and knowledge,
  • Multiple means of expression to provide learners alternatives for demonstrating what they know, and
  • Multiple means of engagement to tap into learners’ interests, challenge them appropriately, and motivate them to learn.

Related: Promoting Inclusion through Universal Design for Learning

3. Common Core Essential Standards

  • In answering the “WHAT” of teaching students with Down syndrome, this is a great place to start. Common Core is a controversial topic, but some amazing educators took the standards grade-level content and broke it down for students with disabilities. “The purpose of the Essential Elements is to build a bridge from the content in the Common Core State Standards to academic expectations for students with the most significant cognitive disabilities.”
  • You can check out essential standards for grades kindergarten through high school right here.

4. Down Syndrome Education International:

  • I usually don’t like Down syndrome-specific learning techniques, because I think students with Down syndrome can learn like other students if the appropriate accommodations and modifications are used. But I do love Sue Buckley’s literacy and math techniques.
  • Buckley is the creator of Down Syndrome Education International, and she has educator online training. These one to two hour webinars offer research-based techniques, practical advice, and work examples. I’ve seen Sue Buckley in action at several conventions, and she’s amazing! Click here to register.

If you’re an educator, share your biggest challenge in teaching a student with an intellectual disability below. If you’re a parent, what do you wish your child’s teacher knew more about? Share your journey with me below or send me a private email!

A Letter to the Teacher of My Son with Down Syndrome

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Dear Teacher,

Tis the season for organizing classrooms, lesson planning, and memorizing new names. When I was a teacher, this time of year brought a mixture of excitement and trepidation. Those emotions remain the same now that I’m a parent to a child with Down syndrome.

Instead of fearing that I would be ill-equipped to deal with a whole new group of students with different needs, I now dread that my son’s teacher will fear Down syndrome and what it means for his or her classroom.

I know, from personal experience, that even a Master’s in Education does not always fully prepare teachers to meet the needs of all learners. Teacher training can sometimes be a one-size fits all approach, until the student-teacher is thrown to the wolves (I mean, students LOL). But here’s the most important thing you need to know to meet the needs of my son who has Down syndrome:

You don’t need a Master’s in Education to care and have an open-mind. Those two characteristics alone can lead to my child’s (and every other child’s) success in your classroom.

5 Things to Remember When Teaching a Student with an Intellectual Disability: 

1. He’s more alike than different:

Troy (left) with his typical twin brother, Hunter (right)

Imagine if the color of your eyes was the determining factor of whether you were cut out to be a teacher. Not cool, right? Troy has a right to the same educational opportunities as his typical twin brother. But the instant a teacher looks at my two boys side-by-side, many have already made a judgement that Troy just can’t cut it in a regular class.

“Different” is all about perspective. To you, my son may not fit the typical model-student mold, but to me he’s just as inquisitive and bright as his typical twin brother. Stop looking at those gorgeous almond-shaped eyes and his cute toddler-like stature; this kid wants to learn. Expect that he wants to act and learn like his typical peers, and you may be surprised at what he can achieve.

2. He needs you to believe in the power of “yet”

Our mindset determines the way we see the world. I want Troy’s teachers to have a “Growth Mindset.” This is the power of believing Troy can learn and improve. I’m not delusional. I understand my son has an intellectual disability, and will likely not “keep up” with his typical twin brother. But with a growth mindset it’s ok if he doesn’t keep up, because he has the power of “yet.”

He may not read and write when his typical peers do, but that doesn’t mean he’ll never read and write. It also doesn’t mean he deserves low expectations and subpar educational experiences. Whenever you feel the urge to say: “Troy can’t _______,” instead say “Troy can’t __________ YET.” This will change your entire perspective about Down syndrome and what my son can achieve.

3. He understands when he’s being segregated

Even with 40 years of federal law and research to back up full inclusion for students with intellectual disabilities, schools continue to segregate students like my son in “specialized” classes. Teachers and administrators say this is what’s best for these “special” students, but the research proves it’s not.

Listen, I understand that inclusion is hard and scary. But my son doesn’t deserve the path of least resistance. He’s smart enough to know that he’s being segregated from his typical peers, and he’ll live up to whatever expectations you set (low or high). We must prepare him for life, and as far as I know there’s no “special” grocery shops, apartments, or jobs when he graduates.

4. His typical peers have a lot to gain with his presence

Many teachers argue that having a student with intellectual disability in their class will be detrimental to their typical students. I disagree wholeheartedly! In fact, research shows that typical student achievement either stays the same or increases with the presence of diverse-ability students. The reason is simple and has been known for generations: The best way to understand a concept is to teach it.

What a wonderful opportunity to teach empathy, and increase achievement levels of all your students. In a meaningful inclusive classroom, all students feel valued for who they are. High achieving students can reinforce what they’ve learned by teaching others, and students like my son can teach those same students that life is about more than just high grades and test scores.

5. More than anything, he needs an open-minded teacher

You can know all the latest teaching strategies to optimize an inclusive classroom: Universal Design for Learning, Process Oriented Guided Inquiry Lessons, Reality Pedagogy, etc. But if you don’t have an open-mind none of these fancy strategies will work. I’d rather have a teacher who’s clueless about all of the above, but truly accepts Troy and believes he can learn than the smartest teacher around who thinks my son is helpless.

It’s up to you to teach other students that my son’s disability is not to be feared. They’ll be watching you!

And remember, the parent of students with disabilities want their child’s teacher to succeed. Come to us for advice. We are the expert of our child, and we can be an invaluable asset to your classroom success. We appreciate you!

We know you may be scared, but our child and your students are worth it! Take the challenge and be the change that’s needed in this world!

With Much Appreciation,

The Parent of a Child Who Wants to be Included

3 Words That Will Transform Your Next IEP Meeting

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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

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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.