Employment Success for One Self-Advocate Includes Promotion to Manager

25-year-old Jack Murphy is proving competitive and satisfying employment for individuals with Down syndrome is possible with hard work and dedication.

Jack recently received a promotion to manager at Cactus Grill in Kansas City, Missouri.

His level of success is still uncommon in the Down syndrome community. With a 70% unemployment rate, many individuals with Down syndrome are lucky to even have a job and most are not working full time or in a high-valued position.

So how did Jack beat the odds?

“I have loyalty to the customers and staff at Cactus Grill. I’ve worked there for over 9 years, it’s a huge part of my life, and my job makes me hold my head high,” Jack Murphy says.

His mom, Bridgett, says Jack faces the same challenges as other individuals with Down syndrome, but the focus in their family has always been on hard work and shared responsibility.

At 2-years-old his parents created a vision statement for Jack with 3 specific goals:

By adulthood, Jack would live away from home.
Jack would have a satisfying job.
Jack would have a satisfying social life.

“Everything we do will be moving him towards those 3 goals. Whether we did full-inclusion in school, or some variation of it. Sometimes a general education classroom was important for the development of appropriate social or behavior skills. Any time we met with his IEP team we reviewed our vision statement, and asked if he had moved towards his goals,” Bridgett explains.

Jack was setting the family table by 4-years-old and always had responsibilities at home.

“We all work. Our family works. As Jack grew older we were always asking our kids ‘what do you want to be when you grow up?’ Bridgett says.

At 16, Jack told his mom he wanted a job at their favorite local restaurant, Cactus Grill. “I made her drive me to the restaurant to apply,” Jack describes.

Jack Graduating from University of Arkansas

“One piece of advice I have for parents and young adults with Down syndrome is to make yourself known at the places you frequent. Introduce yourself and your child. Jack got the job at Cactus Grill, in part, because they already knew him. It’s always about who you know,” explains Bridgett.

Jack started as a hostess in high school, but after graduation left for college at both the University of Iowa and the University of Arkansas. “The University of Arkansas program had an internship in the third year. I had to make a decision in my heart. Should I stay and complete the internship, or come back and take a permanent job with Cactus Grill,” Jack explains.

He decided to come home, and Cactus Grill’s new general manager realized Jack’s loyalty and work ethic was unmatched, and decided to give him a promotion to hostess manager.

“I met Jack 8 years ago while serving at a sister restaurant where Jack was a hostess. We went out to the movies together and I really got to know him. He’s a really moving guy; such a hard worker. I don’t think he was always given the opportunities he deserves. When I came back on as general manager I realized everyone loves Jack. Quite a few people come in just to see him,” Cactus Grill General Manager Paul states.

Bridgett says her son was especially moved after an inspiring breakout session at the National Down Syndrome Congress Convention by Tim of Tim’s Place. “Tim talked about what it takes to run a successful business, and Jack suddenly realized he deserved the same success as Tim. He went from being just an employee to a committed member of Cactus Grill,” Bridgett describes.

“I love the new position. My responsibilities are running the hostess stand. I talk about the line up. And deal with the customers,” Jack explains.

Paul says more employers should hire people with Down syndrome. “My friends and I often talk about why other restaurants haven’t brought on employees like Jack and Carolyn (another Cactus Grill employee with Down syndrome). They do everything by the book and give 100%. I’m amazed at what great workers they are,” Paul describes.

As Jack starts his new chapter at Cactus Grill he has some advice for others that want to follow in his footsteps:

“My advice is to be honest about yourself. Show them what you got. Go in there and apply for the job. It’s my confidence and loyalty, love and passion that got me here,” Jack exclaims.

June 20, 2017June 21, 2017

We Meet with Senator Portman’s Office In Last Effort to Save Medicaid

Disability advocates share our Medicaid story with Senator Portman’s staff member, Robert Braggs (far left)

My son, Troy, and I met with Ohio Senator Rob Portman’s office to share our Medicaid story. We joined five other parents and their children who have a disability.

We met with a staff member, because Senator Portman (R) had just flown out of Cincinnati the day before to attend a Republican caucus luncheon to talk about the American Health Care Act. The bill will repeal Obamacare and cut more than $800 billion from Medicaid.

The Senate version of the bill has been shrouded in secrecy. My disability advocate friends who work on Capitol Hill told me that the public will likely not see the contents of the bill until right before it’s brought up for a vote, before July 4th.

It passed in the House along party lines, although my Representative Mike Turner (R-Dayton) voted against the House version. Congress wants to pass the healthcare repeal bill fast for two reasons: Republicans campaigned on repealing Obamacare and many want to move on to President Trump’s tax reform bill.

Unfortunately, this hastily drafted bill will be devastating for the disability community.

Troy and I on our way to Senator Rob Portman’s office

The $800 billion in Medicaid cuts goes further than rolling back Obamacare Medicaid expansion. The “per capita based caps” would completely restructure how Medicaid is funded, leaving cash-strapped states to pick up the tab.

Troy and other individuals with Down syndrome rely heavily on community and home based services under Medicaid for early intervention, school related therapies, transportation to work, job training, and independent living supports to name a few. Per capita based caps would force states to end these optional community and home based services, because they would have to use what money’s left for acute health care.

Our meeting with Senator Portman’s office is an important one, because the Republican from Ohio is on the committee drafting the Senate version of the AHCA bill. He’s also considered a potential flip vote.

In a statement regarding the bill Portman said “I’ve already made clear that I don’t support the House bill as currently constructed because I continue to have concerns that this bill does not do enough to protect Ohio’s Medicaid expansion population.”

But he also submitted a proposal supporting cuts to Medicaid expansion that are slowly phase out over seven years, instead of three years under the AHCA House version of the bill.

Ohio’s Governor, John Kasich (R), is also concerned about the AHCA bill and it’s impact on Medicaid. Here’s part of a letter to Congress that he penned along with 5 other Governors: “Unfortunately, H.R. 1628 calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.”

Troy deserves a self-determined life of choice, but he’ll need support to get there. Troy doesn’t need a hand out, but a hand up.

Senator Portman’s staff member, Robert Braggs, was very kind to listen to our stories. He told us he would pass along our concerns to the Senator, but there was no clear indication as to how he might vote. Braggs did not indulge any of the Senator’s thoughts on the bill. To those in the room and across America, the bill is still an unknown.

It’s so frustrating to have your child’s future in the hands of those who don’t understand the struggles special needs parents face. We rely on a village of support, and we don’t take for granted the power government has over our children’s fate.

Ronald Reagan began the Medicaid waiver system for children with disabilities when I was born a generation ago. In that time life expectancy has more than doubled for individuals with Down syndrome, from 25-years-old to 60. That’s not coincidental. Government can and has improved the lives of our nation’s more vulnerable. We can’t go back!

May 30, 2017December 11, 2017

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 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!