Posted on March 16, 2017
Comments Off on 2017 World Down Syndrome Awareness Day
Article by Dept. of Public Health and Human Services Public Information Officer, Jon Ebelt. View the article as published in the Helena Independent Record on March 15, 2017.
The Montana State Capitol is about to get ‘All Shook Up’ on March 21, 2017.
That’s when the West Mont Cheer Squad and a certain local Elvis impersonator will team up in celebration of World Down Syndrome Day. The event begins at 12:30 p.m. in the Old Supreme Court Chamber in Room 303.
And, two of the leading stars will be Helena’s Susie Hull and Steven Betts.
Gov. Steve Bullock said it’s important to publicly recognize the contributions of people with Down syndrome, and all individuals with disabilities. “I’m so impressed with the talents and skills of both Susie and Steven,” Bullock said. “I’m equally thankful for our many providers that we partner with all across Montana to offer high quality programs that truly help people with disabilities find success in their communities.”
World Down Syndrome Day is held on the 21st day of the third month to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome. The Department of Public Health and Human Services (DPHHS), West Mont, Helena Industries, PEERS Unlimited, and the Montana Council on Developmental Disabilities are partnering to host the event.
Whenever the Cheer Squad and Betts have joined forces in the past, it’s always been memorable. “It’s something they have done previously,” said Susan Pesta, Vice President of Support Services/Agency Relations for West Mont. “Our cheerleaders are so excited to perform at this event, and the chance to join up with Steven is awesome. The crowd always goes wild with all his moves and costume attire.”
Hull has been a member of the Cheer Squad since 2010, and according to Betts’ family, he has been impersonating the King for decades.
“It started when he was just a little kid, and ever since then it just took off,” said his mother Dawn Betts. “His bedroom could truly be mistaken for an Elvis museum.”
Betts’ routine involves lip syncing to a couple of old time greats, including ‘Jail House Rock’ and ‘Burning Love.’
Coincidentally, the event also marks another milestone as the Cheer Squad is celebrating their 10th anniversary. The group formed in February 2007, and now average at least one local public performance a month, including the annual West Mont Harvest Days, Carroll College basketball games, opening ceremony for Montana Special Olympics, and various other community events.
Joining the Cheer Squad was a natural fit for Hull going back to her love of ballet during her high school days at Helena High. “I like to perform on stage and show people what I can do,” she said. “I like learning new moves, and I’m friends with the other cheerleaders.”
But, cheerleading is just one small part of Hull’s life. During the week, the 32-year-old rises early, catches a ride to a job she truly loves at West Mont Farm and Gardens. There, she enjoys gardening and taking care of all the animals. “At the farm, I feed animals and goats,” she said. “I love field trips to the airport, duck pond and the bakery.” The facility provides vocational training in an agricultural setting for 25 disabled adults.
And, last November she became a certified Zumba instructor. Zumba, she says, is her favorite. “It’s my passion,” she said. “I love to dance. It helps me lose weight, and you really meet nice people. And, I love the other instructors.” She also competes in Special Olympics basketball, swimming and track and field.
Betts is just as involved in the Helena community. For the past 10 years, he has split his work schedule between Papa Johns and Van’s Thriftway. According to his mother, the opportunity for Steven to work has been life changing. “Van’s has been an anchor for my son by keeping him engaged in social activity and maintaining work skills,” Dawn Betts said. “The love and support he receives from those he works side by side is priceless and so appreciated. This also goes for the team at Papa Johns. They not only offer him a part time job, but friendship too.”
When he’s not impersonating Elvis or working, Steven is also a huge fan of classic rock music and prides himself knowing the musicians’ names. And, he’s also a huge Ohio State Buckeyes fan.
In addition to strong family support, both Susie and Steven have focused on their abilities and are thriving in the community. Both receive various services provided by West Mont through programs that help them secure work, and also provide transportation. “Throughout Steven’s young adult years, West Mont has been there to guide and direct him,” his mother said. “As a family we will always be thankful for their many services.”
Similar stories are played out throughout Montana. West Mont is one of 70 Montana providers that contract with DPHHS to offer services for approximately 5,500 Montanans with disabilities in communities statewide. They also serve over 180 people with disabilities on a daily basis through programs designed to foster independence, teamwork and social skills.
Currently, Hull hopes to one day move into her own apartment. “We are working toward that,” says her mother Louise Hull, pointing to her daughter’s various levels of independence. “I haven’t touched her laundry in years, and we’re working on her cooking skills. The thing with Down syndrome is they can do so many things but it just takes a little longer. She can read at a 5th or 6th grade level, but it took a few years to get there.”
According to the Centers for Disease Control and Prevention, Down syndrome remains the most common chromosomal condition diagnosed in the United States. Each year, about 6,000 babies are born with Down syndrome, which is about 1 in every 700 babies born. In Montana, an average of 10 babies with Down syndrome are born each year.
It is a condition in which a person has an extra chromosome. Typically, a baby is born with 46 chromosomes. Babies with Down syndrome have an extra copy of one of these chromosomes, chromosome 21.
A peak through the window into both Susie and Steven’s lives shows they are thriving. To Louise, World Down Syndrome Day showcases all that has been accomplished integrating individuals with disabilities into the community over the past decades. “Tremendous progress has been made, and I’m so thankful to the many providers that have helped Susie over the years,” she said. “It’s really helped her blossom. She used to be so shy.”
At West Mont, Pesta has witnessed numerous success stories in her career that have come to fruition from the providers’ philosophy of focusing on developing their client’s skills. “It is so important to really integrate folks in the community whether it’s Down syndrome or any disability,” Pesta said. “Our philosophy is really about focusing on their abilities.”