InclusiveU: What College Should Look Like for Students with Intellectual Disabilities

Many people agree, college is some of the best years of life.

It’s the first time we live independently. We make decisions that will shape our life forever. It’s a place were lasting relationships are made.

This experience is no different for Josh, a recent graduate of Syracuse University.

He cheers for the Giant Orange in the Otto’s Army section of the SU football stadium. He hangs out with his friends at the UU and interned at SubCat, a professional recording studio off campus.

“SubCat was my favorite internship. I could find out information about getting a job and how to work with the people involved in the job, like the boss or co-workers,” Josh says.

All of these experiences are extraordinary compared to your typical college student, because Josh has Down syndrome.

There are currently more than 260 college programs available to students with intellectual disabilities. The cream of the crop is Syracuse University’s InclusiveU program in New York state.

Related: Yes, My Son with Down Syndrome Can Go to College

I got the privilege to hear InclusiveU executive director, Beth Myers, speak at the first annual NDSS #DSWorks conference in Washington, D.C. I learned how the program fully integrates students with intellectual disabilities into the fabric of campus life.

InclusiveU is one of only a few college programs that practices full equitable inclusion.

This means students with intellectual disabilities declare a major, enroll as an audit student for certificate (which is open to all students), take the same classes as their typical peers, and live with them in the dormitory.

Josh recall’s his favorite professor: “My favorite memory was working on the lights with David Bowman, one of my teachers. He was a really fun guy to be with. Doing the lights for the stage is one of my goals for the future and part of my major.”

A peer-to-peer program helps to facilitate this inclusion.

Josh says, “I got to go to classes, I would study with my peer partners, Cindy and Lindsay. My favorite classes were the classes at Syracuse Stage and stage techniques, were really fun. I graduated with a certificate in Visual and Performing Arts.”

Modifications and adapted coursework allows students to experience a wide-range of courses on campus.

Students have full access to the course catalog, but they can’t take Writing 400 unless they’ve passed the prerequisite courses.

InclusiveU uses Project Search to help students with independence skills. “I love it. The reason why I loved Project SEARCH was because I could explore all the job opportunities I liked,” Josh explains.

The 42 students currently in the program are expected to complete three employment internships on or off campus. They also take seminars in communication skills, professional dress, employment, and self-advocacy.

Entry into the program includes a written application and in-person interview. The student doesn’t need a high school diploma, and the program doesn’t look at GPA or SAT scores. InclusiveU accepts students who are non-verbal, non-readers, and who have low mobility.

Related: Inclusion for Students with Down Syndrome is Just a Click Away

During the #DSWorks seminar I learned that the biggest barrier to more higher education opportunities like InclusiveU is money (isn’t it always?).

Tuition for InclusiveU can run upwards of $23,000 a year. Medicaid waivers, pell grants, scholarships, and federal financial aid are now available to students with an intellectual disability. Still, the cost can be prohibitive. And starting a program like this takes a lot of advocacy and a lot more money.

For Josh, the experience was priceless!

He learned to live independently and hopes to use the skills he learned in his eventual career: “I want to work at pop concerts (Lady Gaga, Ke$ha) working on live audio, lights and special effects. I would like to also work on a TV show specifically a reunion show (Brady Brunch, Full House) being an assistant.”

“I will miss the people at Syracuse University and InclusiveU when I move to Florida.”

Congratulations Josh! You’re an inspiration. Inclusion Evolution and the Down syndrome community wishes you the best of luck!

Do you know someone with Down syndrome that is attending college? Tell me about your experience below or private message me.

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Thank you for your response. ✨

May 24, 2017May 24, 2017

Call To Action: A Nation Is Judged By How It Treats Its Most Vulnerable

Most people would agree my son, Troy, is amongst America’s most vulnerable citizens. Born with the most common chromosomal condition, Troy will always need some support to lead a successful, healthy life.

That’s why it’s so disheartening to hear that many in Congress and the President of the richest, most powerful country on Earth wants to gut a program that helps Troy and millions of other Americans lead healthy, more self-reliant lives.

President Trump’s new budget slashes $610 billion dollars from Medicaid over the next decade. The program currently provides healthcare for 1 in 5 Americans.

Tackling all that’s wrong with a proposal like this in one blog post is impossible. But here’s what I can do: share how it will impact us personally and ask you to take action.

Because here’s what many people don’t realize: Medicaid is not just healthcare for poor adults. Two-thirds of the program’s spending goes to the elderly and people with disabilities.

I can speak to the latter part of this population. When Troy was first born it wasn’t his health that concerned me most. We’re fortunate enough to receive excellent health coverage through the United States Armed Forces, and Troy is one of the healthiest kids I know.

Instead, I was worried about what would become of Troy. Would he ever drive a car, hold down a job, or live on his own? What happens when my husband and I pass on?

In the past 4 1/2 years, long-time disability advocates have shown me the promise of early intervention, school supports and therapies, as well as adult home and community based services. Their kids are living healthy, purposeful lives with the right support. For sure, there’s still big worries, but the disability rights movement has come a long way.

How naive I am to assume Troy would receive the same rights as those that came before him. How stupid of me to assume Congress and our President would choose to protect my son over their own interests. How silly of me to assume the march for disability rights would continue in forward motion without a fight.

Every single one of the services listed above is funded partially through Medicaid. States will be forced to cut these services first, because they will have to focus what little money is left on acute healthcare.

Right now, Troy receives speech, physical therapy, occupational therapy, and special bus services at school. 40% of America’s school children receive similar supports at school, and it’s all funded partially by Medicaid. Only 1 in 5 Medicaid dollars is spend on these school supports, which points to the effectiveness and efficiency of these services.

As an active duty military family, our hope is that we end up in a state that will at least raise taxes to pay for these lost federal dollars.

States will be forced into choosing two options:

Per capita caps: states would receive a set amount of federal dollars for each beneficiary
Block grants: a lump sum from the federal government

Both of these options strike fear into this momma’s heart, because the result is less home and community based services for my son depending on where we live.

I recently spoke to a fellow advocate who’s adult daughter with Down syndrome just got a full-time job. She told me she had to decide between working full-time and her daughter turning down the job offer, or quitting her full-time job so she could transport her daughter to and from work. Luckily, her daughter finally got off Ohio’s waitlist for these services, and she received transportation to work. Now they’re both working and paying taxes.

As of right now we’re on a state waitlist for transitional services. When Troy becomes an adult he will rely on home and community based services like transportation to work, job coaches, and independent living support aides to be a successful, productive citizen. But we’re military and will likely not end up in the state we’re in now; further complicating Troy’s adult transitional opportunities.

Future prospects for my son, as they stand right now, aren’t as good as they could be. Only 24% of people with cognitive disabilities are even employed. These cuts to Medicaid would take us back to the dark ages.

Already America’s 5 million children and young adults with disabilities rely on their families for daily in home care. A recent article put the cost to all of these families at 1.5 billion hours and $11.6 billion dollars a year–if you calculate all that work at minimum wage.

Special needs families are already saving the American taxpayers billions of dollars. A few generations ago, all the cost of care for children like Troy would be placed on the state, as most were institutionalized or worse.

In our household we live by the saying “freedom is not free.” My husband has served his country proudly for the past 15 years. He has seen combat, and we have buried too many friends. Our family is the living embodiment of the sacrifice needed to make this country great. We sacrifice so children like Troy can live to their greatest potential.

So here’s what you can do: Use the link below to email, call, or schedule an in-person meeting with your Republican Senator. They’re expected to take up this issue SOON! Tell them your personal story. If you don’t have one, feel free to tell them about Troy. We thank you for your advocacy!

Contact your U.S. Senator Here

May 22, 2017May 21, 2017

“Wonder” Book Review: How Loving Someone with a Visible Disability Forces You to Stand Out

The old adage “don’t judge a book by its cover” never resonates with me more than after I had Troy, my son with Down syndrome.

I’ll be honest, I’m a conformist. A follower even. I’ve blended my whole life. I was never the richest kid, or the smartest kid, or the prettiest either.

But what happens when you can’t blend, because you were born to stand out?

My Troy stands out. His visible disability brings instant judgement wherever we go:

From fellow moms: “Can he climb those playground stairs?”

From other kids: “Troy, let me help you with that.”

From his teachers: “I am shocked that he’s potty trained and knows all his letter sounds! But we’re still not sure he can keep up in higher grades. May be you should consider a resource room.”

Even from sweet grandmothers: “Oh, those children are always so happy. Your son is an angel sent from heaven!”

These comments are all well-meaning, which is what makes them sometimes hurt the most.

In my experience, I can more easily ignore and shut out the uneducated jerk who treats Troy like the plague.

It’s the good intentioned comments that I receive on a daily basis that weighs me down. I at once want to hug them for their desire to “want what’s best for Troy,” and punch them for instantly and subconsciously assuming “he can’t.”

Their comments often catch me off guard, because 99.9% of the time ALL I SEE IS TROY—NOT Down syndrome.

It’s a constant internal struggle.

That’s why I simply adore a recent pick by my beloved book club called “Wonder” by Raquel J. Palacio.

It’s a pre-teen book (one of my personal fav book genres) about a boy named August (“Auggie”), who has a severe facial deformity. At 10-years-old he leaves the decade-long safety of his homeschooling career to enter a private middle school.

You can imagine the drama that ensues.

This thought-provoking, witty, and eloquently written book will have you reeling, especially if you’re directly connected to someone with a visible disability or just different.

Auggie is introspective, vulnerable, and hilarious.

The book starts out with Auggie declaring “I won’t describe what I look like. Whatever you’re thinking, it’s probably worse.”

He’s not a novel device or token disabled kid. Neither are the other characters, which I found especially fascinating.

There’s characters in the novel that never come to accept Auggie, or see him as anything other than “other.” But there’s also truly inspiring friends, who are amazing because they learn to see Auggie for who he truly is: a smart, funny kid.

I cried while reading the perspective of Auggie’s parents. They at once want to shield their child from this brutal world, but also push him to reach his highest potential. Any parent can find commonality in their story.

And the perspective of Auggie’s sister, Olivia (“Via”) particularly stuck with me.

I worry about the impact of Troy’s disability on my typical children, as much as I worry about Troy.

Will they resent Troy, or my husband and I for the extra care that Troy sometimes needs? Will they be bullied, because their brother is different? Will this visible disability ruin their life?

Via taught me to take a deep breath, and embrace the mess that is life.

Yes, she does some time resent her situation (don’t we all at one time or another), but she’s the only character who somehow inherently embraces her brother and pushes him to live life like no one else.

Get this book! Have kids you know read it. You won’t be disappointed!

The movie version, starring Julia Roberts, Jacob Tremblay, and Owen Wilson, was supposed to come out this past February. It has been postponed to fall of 2017.

I “wonder” if viewers will be able to embrace this movie, understand it’s impact, and not judge a book by its cover.

May 17, 2017May 17, 2017

Born This Way: Adult Self-Advocate Gives Hope that the Seemingly Impossible Can be Reached with the Right Motivation

Like 40% of individuals with Down syndrome, my son Troy has Childhood Apraxia.

It’s a motor speech disorder in which the brain has trouble planning to move the body parts (tongue, lips, jaw) needed for speech (see the video at the end). Some days I feel like Troy will never be understood by anyone outside of our immediate family.

But then I was lucky enough to meet Sean, from the Emmy Award winning reality television show, Born this Way.

We both decided to advocate on Capitol Hill this past April at the Buddy Walk on Washington, and I got to have dinner with him and his mom. This mom-son duo is a formidable force!

Lower right: Sean with his mom, Sandra, and California Congresswoman Maxine Waters

I was a bit star-struck! I mean, here’s a guy that’s co-starring in an award winning reality show entering its third season, and he has Down syndrome!

But I was even more inspired when Sandra, Sean’s mom, told me that Sean has Apraxia too, and she says “It was not so long ago I had to translate everything Sean said.”

How then, is it possible that Sean is on television, making celebrity appearances, and booking regular speaking engagements?

It’s because Sean dreams only one way:

BIG!

“I want to buy a house at the beach with a pool, a bowling alley, a movie theater and a man-cave in the basement.”

“I want to go on a date with Megan Trainor.”

This is how he opens his speeches these days. With what he calls his “crazy dreams.” Then he has the crowd repeat after him “It could happen!” In which he replies, “That’s what faith can do.”

These phrases are so well-known by fans of Sean’s that they’ve inspired Seanese —Sean’s newest business venture. Sandra hopes it won’t be lost on readers that “less than 5 years ago he was unintelligible, and today we celebrate his speech by immortalizing it on swag.”

But here’s what those with Apraxia and their loved ones need to know:

Sean’s hard-won success is a marathon, not a sprint.

Sandra never dreamt that Sean would be on television, but he did. He was involved in drama throughout school, and auditioned for a sitcom while in community college. Sean was confident that he would get the role, but his mom was honest with him: “I couldn’t understand your words, and if I couldn’t understand them, I know they couldn’t.”

But it seems this small failure served as further motivation for Sean. He took his mom’s advice and worked tirelessly on his intelligibility at every chance. Now look at him!

Born This Way opened doors for Sean once thought impossible. And has also helped Sean perceive himself in a new way.

In the first season, Sean was the self-proclaimed “Ladies Man.” But after watching himself on the show, he realized the saying’s true intent.

Sandra says Sean has “grown so much by watching himself on TV and learning from his mistakes in an authentic way.”

Sean’s also living in his own apartment, subsidized by HUD. He has a roommate who is a live-in-aide.

He had a job at Home Depot, but it didn’t give him the social outlet he was looking for. He loves kids, and is now starting a job at a trampoline park working with children.

Some within the Down syndrome community criticized Born This Way for only showing what they say are “high functioning” individuals with Down syndrome. But Sandra argues that Sean is not the smartest, or most intelligible. In fact, she says the show uses some pretty “creative captioning” so the cast can be understood.

What she says is unfair are the differences in adult transitional services throughout our nation.

It’s obvious the cast members benefit greatly from California’s system, which has no waitlist for job coaches and supported living services.

Sandra also makes an important point that “if we criticize television shows like Born This Way and stop watching it, we’ll lose the opportunity to open doors for all individuals with Down syndrome.”

Both Sean and Sandra have sage advice for parents like me and kids like Troy, who seem to not yet see the forest for the trees:

Sandra says it’s important parents find a speech pathologist and occupational therapist who are knowledgable in the therapy techniques for Apraxia, and practice with your child every day.

But more important “find out what your young adult LIKES, and help them learn about the types of jobs they can do to fulfill their dreams.”

I want Troy to have the best services and therapies to address Apraxia, but what Sandra and Sean taught me is even more important. If we want our children to be success in school and work, we have to focus on what’s really important: “Have good behavior and listen and be nice to everyone,” Sean says.

The rest will follow with hard work and the right motivation!

Season 3 of Born This Way aired May 16, 2017. You can catch up on Seasons 1 & 2, and watch current episodes here. Sean won’t reveal any real spoilers, but says parents of young children with Down syndrome will definitely want to tune in for a surprise this season.

You can help support Sean in his next business venture at https://seanese.com.

If you’re still trying to understand Apraxia, watch the video below:

May 14, 2017July 31, 2017

I Can! A Communications Workshop for Adult Self-Advocates

Deep breath and exhale. “I can!” Stand tall. “I can!”

Eye contact. “I can!” Firm handshake. “I can” Smile. “I can!”

It’s said communication is the key to personal and career success. But a combination of low expectations and medical barriers for individuals with Down syndrome often leads to an unhealthy mantra: “I can’t!”

I’m hoping to help change that with a small group of adult self-advocates in my community.

With inspiration from a similar program in Maryland, I’ve started a communication workshop to give 8 self-advocates new communications skills they can use at work and life in general.

Our mantra is “I can!”

Our local community theatre’s Theater Educator, Stephanie Radford (heavy on the “RAD”), is leading the group in
communication skills like eye contact, improv, body language, and speech writing and presenting. With a little coaching the self-advocates seemed at ease with communicating their likes and dislikes at our very first workshop.

Our 15th Annual Buddy Walk is just a few months away and I’m using the event to highlight our adult self-advocates and their new and improved communication skills.

We raise a lot of money in the name of Down syndrome for the event, but many people don’t know where that money goes.

Who better to explain how the money is used than the people who benefit the most from the donations: our self-advocates.

I plan to have our self-advocates introduce some of our VIP guests at the Buddy Walk, like Ohio state Representative Niraj Antani. They’ll also man our first annual advocacy table.

Self-advocates will share our mantra “I can,” with attendees by talking to them about their job success and MVDSA programs that they benefit from.

Low tone, childhood apraxia, hearing loss are just some of the more common problems that impede speech and language development in our friends with Down syndrome.

Early intervention, speech therapy, and inclusive education have helped improve communication outcomes for individuals with Down syndrome.

Still, many adults with Down syndrome are finding barriers to employment in part because of weak communication skills.

Grassroots activities like our local communication workshop is just one way you can help improve the odds of employment success for individuals with Down syndrome.

I can’t wait to see how they progress over time, and I’ll be sure to keep you posted! Because “I can!”

Email me at inclusionevolution@gmail.com or comment below for more information on how to start your own communications workshop. Also, check out Art Stream.

And if you’re in town, please come out and support the Miami Valley Down Syndrome Association at our 15th Annual Buddy Walk!