Why You Should Hire Someone with Down Syndrome

October 11, 2018 by Courtney

Sally loves her job. She shows up on-time with a smile, and dedication to her work. She almost never misses a day, and her co-workers say she boosts morale. Sally also happens to have Down syndrome.

“Having a job is important to me, because I like to help people. I also want to earn a paycheck, so I can buy a plane ticket to visit my brother in Washington,” Sally explains.

She got her job with the help from Project Search; an international job transition program that operates in all 50 states and 10 countries. The program’s goal is to help individuals with cognitive disabilities find competitive employment, and keep it.

Upper Right is Theresa Raypole with Sally

Sally says “I learned to be organized in Project Search, and to always clean and sanitize.”

She wasn’t even sure she’d be able to participate in the program. Sally’s single mom works full time, and couldn’t get her to the program consistently.

Theresa Raypole, the coordinator and educator for our local Project Search program, says transportation is often an issue, but not something that can’t be overcome.

Although Sally’s mom was nervous, Sally decided to use the local city bus line to get to and from the Project Search campus. The program helped her learn how to use the line, and by the end of her internship she was riding independently.

Director Raypole accepts 12 students into the program each year, and by this spring’s graduation over half are already receiving competitive employment (they have a year from graduation to secure a job).

When students are asked “If you could go back to high school and tell your teachers what you need to be successful in life, what would you say?”

“Teach us to be comfortable around all types of people and work.”

“Talk to us about our future.”

“Teach us professionalism.”

“Get us out in the work world and community.”

“Teach us that criticism is ok. Teach us how to handle it, so we can learn from it.”

Their answers are common sense for any type of success, yet provides insight into society’s low expectations for them.

Unfortunately, only 17% of students with cognitive disabilities are included in general education classrooms in high school, and the lessons above are often absent during their educational career. Once they leave school, ONLY 24% of people with cognitive disabilities find work.

In our local Project Search program, students spend 9 months interning at a local medical center. Raypole says often medical professionals are at first nervous that individuals with cognitive disabilities are allowed in clinical situations.

But she says these professionals’ first impressions were quickly proven wrong. In her first year running the program two students were hired in the surgery department.

The head nurse found the surgery department was able to turn rooms over faster with these employees, and soon they created positions for more to be hired.

“It’s hard to explain to the business world that this is not just the ‘nice thing to do.’ It really will raise their bottom line,” Raypole argues.

Often employees with Down syndrome and other cognitive disabilities are highly motivated, loyal, prompt, and exceptional at customer service. They often boost co-worker morale and productivity.

Project Search students complete an internship customized to their interests. Even though they’re working in the hospital they may have an interest in landscaping or working with children, so the program creates a position for them to hone those skills.

“Every opportunity and challenge is faced during the internship. They quickly learn that they can’t just go to the break room whenever they want, or talk nonstop to their co-workers. These are all soft skills they never learn in high school. They learn to self-advocate.” Raypole explains.

“Project Search helped me learn to do things on my own and be confident,” Sally says.

Sally quickly found employment after graduating from Project Search. Now she works for a local high school’s food services division.

She gives this advice to other individuals with Down syndrome looking for work:

“I would tell others to work hard and always do their best.”

Want to find a Project Search program in your area? Head here.

For more information on employment for individuals with Down syndrome head here.

From Awareness to Advocacy at the Buddy Walk

October 2, 2018 by Courtney

Our local self-advocates proved how important advocacy is at our 15th Annual Miami Valley Down Syndrome Association (MVDSA) Buddy Walk.

Nothing About Us, Without Us!

Often good-intentioned parents and loved ones create fundraising events like the Buddy Walk to spread awareness about Down syndrome, but don’t include actual people with Down syndrome in leadership or advocacy roles. This mind set has got to change

Down Syndrome Affiliates in Actions gave me the idea of having our local self-advocates lead the Buddy Walk with a advocacy table. This idea started six months ago with a Self-Advocate Communications Workshop that you can read about here and here. At the workshop, teens and adults with Down syndrome learned the skills they need to become self-advocates and lead our Buddy Walk.

Have any questions about our Self-Advocate Table or want to start your own? Comment below and I’ll be in touch.

The Link Between Sleep and Learning

June 12, 2018 by Courtney

It wasn’t long ago that dad’s snoring was a family joke. New research is now showing that sleep problems can lead to serious issues, especially for our loved ones with Down syndrome.

Evie is only 5-years-old, and already she’s underwent 7 sleep study.

“Her first was at 11 months because they were trying to rule out pulmonary pressure issues before doing heart surgery. She had mild apnea then,” says Evie’s mom Jen Alge. This amazing preschooler, who happens to rock an extra chromosome, was found to develop severe obstructive sleep apnea (OSA) in a follow-up sleep study.

Surgery to remove her adenoids and tonsils brought down Evie’s OSA levels to a more moderate range. “A simi MRI (which I highly recommend) showed how obstructed her airway is, so we started Evie on a CPAP (Continuous Positive Airway Pressure),” describes Alge. Evie’s mom is a disability advocate friend of mine, so I’ve heard her talk about their countless sleepless nights. “She does wear it on average 7 hours a night, but that’s only because I’m in her room 5-8 times a night at least putting the mask back on.”

Research out of the University of Arizona links Obstructive Sleep Apnea to cognitive problems.

“Addressing sleep disruptions may be an overlooked way to improve cognitive outcomes in the Down syndrome population,” says Dr. Jamie Edgin, lead researcher and professor of Psychology and Cognitive Science. The study found that individuals with Down syndrome with OSA had cognitive, memory, language, and behavioral issues.

Edgin’s study of school aged kids found those with untreated OSA had a poor ability to learn new rules, and a 9-point difference in verbal IQ scores compared to their peers with Down syndrome without OSA. “A more recent study of preschoolers with Down syndrome found that those with OSA had fewer words and may limit how well they learn to communicate,” explains Edgin.

It’s estimated that 50-100% of individuals with Down syndrome have Obstructive Sleep Apnea (OSA), and most parents can’t predict whether or not their child has it.

This is true in our case. I had no suspicion that my son, Troy, had OSA, but took him in for a sleep study at 2-years-old anyway after reading Edgin’s research.

The American Academy of Pediatrics recently lowered their recommended age for completing a sleep study for children with Down syndrome from 8-years-old to 4-years-old. “The earlier we detect the sleep problems the better. There’s a push in the medical community to decide how early and I argue it should be earlier than 4-years-old,” explains Edgin. “A study out of Indiana found that babies as young as 6-months-old showed divergent sleep patterns.”

I’m glad I didn’t wait to take Troy in for a sleep study. At 2-years-old he had moderate sleep apnea. Troy got his adenoids and tonsils removed, which was enough to resolve his sleep apnea. At almost 5-years-old he’s speech has taken off despite his Apraxia diagnosis, although I’ll never know if that’s because we were so proactive in treating his OSA.

Parents should continue monitoring sleep issues even into adulthood.

“One age group that’s not being studied is adults,” says Edgin. “OSA and other sleep issues has been shown to lead Alzheimers and cognitive declined in typical adults. The same is likely true for adults with Down syndrome. Although they may suffer these declines earlier than their typical peers.”

Edgin recommends that individuals with Down syndrome repeat sleep studies periodically throughout their lifespan. “As people age and put on more weight it can reoccur. Parents need to stay vigilante as they age,” explains Edgin.

Talk to your child’s doctor and decide on a course of treatment that’s best. Not every treatment is meant for every child.

For our family, surgical removal of aenoids and tonsils was enough to resolve Troy’s OSA for now. Evie’s mom, Jen, says she hasn’t seen any difference in her daughter’s language and behavioral outcomes after using the CPAP, but she still thinks the treatment has been worth it.

“Evie’s always been a smarty pants and she talks all day long so I can’t credit the CPAP for any changes there. I will say she is getting more air and isn’t gasping for breath or snoring with the CPAP on so that’s a relief. The behavior changes might be more long term given her age,” explains Jen Alge.

Remember sleep is likely just one piece of the puzzle when it comes to cognitive, language and behavioral issues.

“Sleep issues alone do not fully explain the extent of language disruption in individuals with Down syndrome. We found that the good sleep group with DS was also impaired in these areas in relation to their typical peers,” explains Edgin.

“It’s important to understand the link between sleep and learning problems, but it’s not the only thing people need to keep in mind. In the end, language interventions may be more beneficial if done in conjunction with sleep interventions,” argues Edgin.

Interested in learning more about 5-year-old Evie’s OSA treatment? Read here.

A Summer of Inclusion at Camp PALS

May 30, 2018 by Courtney

It’s an American coming-of-age tradition: summer sleep-away camp with friends. 20-year-0ld Pete Roll got his chance to soak in all that’s great about summer at Camp PALS.

“It is VERY fun! I got to stay in the OSU dorms like Em and Dan (his sister and brother),” Pete Roll explains. He’s attended the camp every summer for the past three years.

Camp PALS is a week-long overnight camp hosted at 11 universities across the country for young adults with Down syndrome (age 12-30) and their typical peers. PALS mission is to create an inclusive experience where these young adults grow in independence, and build transformative friendships.

Pete attended camp PALS on the Ohio State University campus. As seen in the video above, he enjoyed bike tours, karaoke, and showing off his dance moves.

Pete Roll won the “biggest smile award” at Camp PALS; Ricky Price far right

The Columbus, Ohio Camp PALS Logistical Director, Ricky Price, says camp PALS is more than just a fun time: “Without directly working on appropriate social skills, we are teaching them through inclusion. When Pete arrived at camp 3 years ago he was a shy kid who knew very few people. This year he won the ‘biggest smile award,’ is eager to know everyone, and helped comfort a first-time camper who was upset.”

This is the first time away from home for many of the campers. Price says they help new campers feel welcome with a heart-warming arrival ceremony, which includes 20 new friends welcoming the campers with signs of encouragement, hugs, and music. “It’s an overwhelming experience of acceptance,” Price describes.

The week long activities are different depending on your location. In Columbus this summer, campers enjoyed a Disney movie theme.

“We rented out an entire movie theater and watched Moana. Pete had the biggest smile on his face the entire time the movie played. He rocked at singing Moana’s theme song “How Far I’ll Go” at karaoke night. It takes a lot of courage to get up and sing in front of people. Pete has definitely come far!” Price says.

“My favorite part is hanging out with the COOL counselors like Ricky,” Pete explains. Campers with Down syndrome are matched up with a same-age typical peer who shares the same interests or hobbies.

Part of the week’s activities includes PALS Congratulations project. Campers write letters of Congratulations to expecting or new parents of children with Down syndrome. The letters offer new parents an intimate and thought-provoking look at the beautiful lives of young adults with Down syndrome.

Young adults with Down syndrome are teamed up with a typical peer

The camp experience is invaluable for everyone involved.

“I’ve worked for the PALS program for 8 years. I had a brother with a disability and that’s how I got involved. I started in high school and I wasn’t the most social and outgoing person. Camp PALS was the first time I made a true connection to my own peers. I still stay in touch with my first campers (typical and those with a disability),” Price describes.

He says the message of inclusion and acceptance is seen by the community at-large too. “People will stop us on the street and ask us who we are and what are we doing. We’re showing them that it’s normal to include people with intellectual disabilities in everyday life,” Price explains.

The end of the week includes an inclusive closing ceremony, where campers, friends, family and community members are invited to learn and talk about campers’ experiences. Price says some of the most moving speeches are from parents who share their gratitude and trust at allowing their child to be away from home for the first time. “There’s not a dry eye in the building,” Price says.

“I think Pete loves that he can feel like everyone else! All the campers have the same diagnosis, so he isn’t different. He also loves that he’s away from home on a college campus in an actual dorm. It’s an amazing experience!” says Pete’s mom, Chris Roll.

To find out more about information and where you can attend Camp PALS visit their website here.

PALS opens their program to any individual with Down syndrome ages 12-30, and their typical peers ages 16-30. The only requirements are an openness to the camp experience, an ability to attend to their private hygiene, and endurance to attend to a week of scheduled activities.

Tuition for the camp is $1400, and covers food, housing, supplies and activities for the camper and typical peer volunteer. Reduced tuition and financial aid is available for those that cannot afford the cost of the camp. The PALS Program covered 100% of the financial aid requests made last year.

Price says bringing camp to your local university is as easy as having a sizable population of individuals with Down syndrome and community interest. The PALS program asks for a donation from local organizations to start the program. This shows a commitment and desire to bring the program to your area. Once the there’s an interest, PALS creates a relationship with the local university and recruits high schoolers and college-aged volunteers.

Disability Advocates Share Resources for Life After High School

March 14, 2018 by Courtney

For those with disabilities and their families, leaving high school can be like falling off a cliff. Only 17% of people with disabilities are employed in America today; that’s compared to 65% employment for the rest of Americans. Many people with disabilities never received a regular diploma, or proper preparation for life after high school. Now a group of disability advocates want to pave a better path forward.

“My brother has a disability. Growing up, it was hard watching the struggles he and my family faced. We had to move states to get him the resources he needs. When I left home for college, I kept thinking this would have been great for Scotty. But his school didn’t prepare him. Nobody was teaching him how to advocate for himself. My mom struggled to get him the resources he needed to transition to life after high school,” describes Ricky Price, co-founder of The Next Step Programs.

Read Related Post: A Summer of Inclusion at Camp PALS

It was after working at Camp Pals, a summer camp for teens and adults with Down syndrome, that Ricky Price and fellow camp counselor, Josh Fields, agreed something needed to change. These ambitious 20-somethings started The Next Step Programs, a nonprofit that provides resources and workshops geared towards transition. “There’s too few opportunities for these young adults,” says Ricky.

TNS Co-Founders, Josh Fields (left) and Ricky Price

The Next Step Programs (TNS) has created a fantastic online tool for families in search of transition resources. “When students transition out of high school, parents are left to do a lot of digging to find out about resources post-high school. We wanted parents and self-advocates to have a place they could go to find resources with one click. We did the research for you! It includes resources for the states of Michigan and Pennsylvania so far,” Ricky explains.

The resource map includes many transitional services including legal, educational, independent living, transportation, and competitive employment opportunities. You can find the map here. “It’s labor intensive to gather all these resources in one place. We’d like to have the funds to expand to different states, and create a hard copy of the map,” Ricky says.

Read Related Post: Legislation Could Continue to Increase College Opportunities for Students with Intellectual Disabilities

TNS founders have a lot of other ideas for transition resources. With Masters degrees in disability-related services, both Ricky and Josh realize the immense need for more programs after high school, as well as connecting existing programs with people in need. TNS started a video blog series to show case the struggles and triumphs of transitioning youth. “It’s important to share their struggles and successes. We plan to follow up with these self-advocates and their families. We also want to interview family members, teachers, and experts in the field,” Ricky explains.

TNS is also starting a workshop series this spring focusing on the transition from high school to college or competitive employment. “We are inviting speakers to talk about independent living supports, degree vs. certificate track, employment, transportation, and self-advocacy training,” Ricky says.

Ricky believes transitional services are starting too late, and not teaching the right skills for life after high school. “Transition IEP goals should be written by the time a student is 14-years-old. These goals shouldn’t teach specific job skills like how to dust and mop. Anyone can learn those skills later. What’s harder is teaching soft skills like living on your own, advocating for yourself, doing your own finances, finding and keeping a job,” Ricky explains.

Ricky’s brother Scotty did end up going to college, but Ricky says no one prepared him or taught him those all important soft skills. “He didn’t want to use services for people with disabilities at college, because he didn’t want to be defined by his disability. He never advocated for himself. Although he has a good job now, I wish he would have had a better road map for life after high school,” explains Ricky. Now, through TNS, Ricky and Josh are building a better future for others with disabilities one click and workshop at a time.

TNS is having it’s 4th annual Gala to raise funds for expanded programming this summer. You can also donate online here.

Are you having a hard time navigating the transition from high school to post-secondary education or work? Would a non-profit like TNS be helpful in you or your child’s journey? Comment below.