O F C E N T R A L K E N T U C K Y S P R I N G 2 0 2 4 FEATURE STORY On the Job Front Page 8 PARENT’S PERSPECTIVE Accepting the ‘Unexpected’ Page 4 DSACK SPOTLIGHT Fun and Learning Never Ends Page 6
Down SyndromeAssociation
On the Cover: Olivia Shorr
STAFF
ExecutiveDirector:TraciBrewer
EducationCoordinators:JeanBryantandElaineBurns
Medical/CommunityOutreachCoordinator:CourtneyElbert
OfficeCoordinator/MagazineEditor:TerriMcLean
AdministrativeAssistant:EmilyWright
OFFICERS
Chairperson:CoreyHawes Versailles KY
Treasurer:LeeAnnMullis Georgetown,KY
Secretary:AnnaBullard Lexington KY
BOARDOFDIRECTORS
ChristopherAzbell Lexington KY
NikkiDavidson Lexington KY
KristenDieruf Lexington KY
ShawnFear Lexington KY
AmyRoberts Somerset KY
ElizabethRussell Paris KY
MargotSchenning Lexington,KY
MattShorr Lexington KY
CarynSorge Lexington,KY
JonathanWright Lexington KY
LauraYost Lexington,KY
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DownSyndromeAssociationofCentralKentucky 2265HarrodsburgRoad,Suite370,Lexington,KY40504
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TheDSACKmagazineispublishedbytheDownSyndromeAssociationofCentral Kentucky 2265HarrodsburgRoad Suite370 Lexington KY40504
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FROM THE EXECUTIVE DIRECTOR
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PARENT'S PERSPECTIVE
PAGE 6
DSACK SPOTLIGHT
PAGE 8
FEATURE STORY: EMPLOYMENT
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FROM THE DSACK BOOKSHELF
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K E E P I N G U P W I T H D S A C K
FROM THE EXECUTIVE DIRECTOR
By Traci Brewer
I’m so glad spring is here. I honestly don’t mind winter and am fine with cozying up on the couch with a warm blanket However, there is something about spring that whispers happiness and new possibilities.
Thinking of possibilities gets my mind churning about how DSACK can continue to grow to meet the needs of our students and their families I start dreaming of more space, or even a free-standing building with our name prominently displayed on the outside. A space that allows multiple classrooms, a working kitchen for cooking classes, maybe even therapy rooms, so families can have less stops to make in their week I’d love to open a community work space, allowing people to use extra space in our building for community events or a office/creativity space allowing us to welcome others into our space and introduce them to people with Down syndrome. There is so much more that we can and will do one day!
Giving monthly can be a more budget-friendly way to give, while allowing DSACK a better sense of funds coming in each month For those who are raising money for your walk team, your monthly donations are credited to your team!
DSACK started with a dream, and dreams will keep us growing. Sign up for Club 21 today, and “dream a little dream with me!”
Like a lot of things in life, money is an essential ingredient. As a woman raised in the South by a very proper mama, it’s not always easy for me to talk about money. But when it comes to DSACK and the dreams we can accomplish, I have no qualms about it To shift the narrative, I think asking people to give is even allowing them to bring joy and satisfaction into their lives.
One very easy way to give to DSACK is through our monthly giving plan, Club 21
ACCEPTING THE ‘UNEXPECTED’
By Jim Ash
If I were required to give only one word to describe Olivia, it would be “Unexpected ” I mean this in the most positive light that can be placed on this word.
When Olivia was born, 24 years ago, Jane and I weren’t expecting issues of any kind with our second child, but a diagnosis of Trisomy 21 came despite our expectations. We had no idea what to expect from that moment on. It was a whirlwind of medical professionals bombarding us with more information than we could process in a very short amount of time Olivia did not come home for several days so we had those days to begin processing all that was going on, all while surrounded by a lot of very nice medical professionals who could answer questions for us and give advice.
Within a few hours, we learned that Olivia had a heart defect that doctors were expecting a need to address immediately To our surprise, and theirs, she did the unexpected and was able to push back the need for surgery until she was almost 4 years old.
Like everyone else, Olivia has faced many challenges and continues to do the unexpected at every turn She exceeded the expectations of her therapists, which was met with joy from all involved. We were informed by her educators to expect a lack of ability to properly retain lessons taught to her. After a lot of advocacies for Olivia’s education, she exceeded the expectations of her educators, even when faced by those who would attempt
P A R E N T ' S P E R S P E C T I V E 4
From left, Jim, Olivia, and Jane Ash
to hold her to a lower standard. Olivia persevered and graduated from Lafayette High School in 2018 with a state issued high school diploma Once again, she achieved the unexpected
Olivia has been involved in activities of all sorts from a very early age. She loves to play baseball, softball, basketball, dance, swim, music, singing, and bowling Sometimes her methods of playing aren’t what you would expect, but unexpectedly she gets the job done and enjoys herself no matter the task.
Along the way we became involved with DSACK. This opened so many wonderful opportunities for Olivia Through DSACK, Olivia has expanded her world to include employment and furthering her education. DSACK affords her opportunities to socialize with her peers and she has gained many friends along the way. Jane and I both wish that we had gotten involved with DSACK much sooner As caregivers, they have elevated our efforts to include so many more wonderful opportunities for Olivia
There was a moment when Olivia was 5 years old. I was assisting her older brother with his homework. Her eager eyes
made contact with mine and she quickly ran to my side. Looking up at me, she points to her brother’s homework and says “Me?” I picked her up and set her on my lap and, as usual, I was greeted with a big smile and a hug. She studied the busy work her brother was doing. She looked at me with her clear, questioning, and hungry eyes and asked “Me that?” I smiled and gave her a big hug as I told her “Yes Olivia, you can learn too ”
What began as an unexpected worry and concern managed to turn around and become a wonderfully unexpected blessing in our lives It did not take long for Jane and me to realize that Olivia could achieve the unexpected with just a little help from her family and friends.
Jim Ash and his wife, Jane, live in Lexington with their daughter, Olivia, 24. Jim works in the Agricultural Engineering Department at the University of Kentucky and Jane works for Kroger. Olivia is an employee at Kid to Kid (read more about her and her job on page 9)
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DSACK’sFunand LearningNeverEnds!
Winter may be the so-called down season, but not for the DSACK community The programs and events held during winter ’24 kept all ages busy – from Playgroup to Simple Socials to GiveBack Events to Oneon-One Tutoring, the fun and learning never stopped. Here’s just a glimpse. .
DSACK spotlight 6
Socials Playgroup
Tutoring
Community
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GiveBacks
Friends
On the Job Front
By Terri McLean
Now more than ever, people with Down syndrome are enjoying greater independence, thanks in large part to an increase in the number of those entering the workforce. And while there’s still much to be done in the employment area, more people with Down syndrome are earning money, building relationships, and living more fulfilling lives because of having a job.
“I don’t think there are more jobs out there, but the workforce has changed, people have changed We now know how to support people with Down syndrome in the workplace,” said Katie Wolf Whaley, project director of the Kentucky Supported Employment Training Project at the University of Kentucky Human Development Institute
“It’s not like the flood gates have opened up and more jobs are available,” agreed Traci Brewer, DSACK executive director. “But it used to be that the stereotypical jobs were the only ones available, and all that’s great, but I think we’re starting to think a little bit differently about it People with Down syndrome are starting to say where they want to work, what their interests are, and then matching them up to the appropriate job.”
Whaley, who believes all people, regardless of the impact of their disability, should have the opportunity to work, has seen people with Down syndrome work in such places as doctor’s offices, banks, day care centers, and schools. “There’s a wide variety of jobs available.”
Why Work
According to Brewer, the answer to the question “Why work?” is an easy one: for all the reasons anyone goes to work. Yes, people with Down syndrome get jobs to make money. But “it’s so much more than that.”
“It’s a sense of community and a sense of value,” she said “And if you flip that around, it’s also for people in the community seeing that people with Down syndrome are more than just a smile and a hug, that they are competent and they are able. You see them in a different light.”
“
There’s so much to gain from work,” Whaley added “It’s also how we get to know people, so there are a lot of relationships that come with work. It’s a way to make friends and learn how to be responsible to other people.”
Too often, Whaley said, people with intellectual disabilities are seen as the recipients of service rather than the givers “So when you work, you’re giving and you’re valued for what you have to offer.”
F E A T U R E S T O R Y
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Types of Work Available
For people with Down syndrome and other intellectual disabilities, there are three types of employment available to them: competitive/competitive integrated, supported, and sheltered.
“Just like with typical children, it begins with parents finding out what interests their children with Down syndrome, what their skills are, and what they want to do when they grow up.”
Traci Brewer
Competitive integrated employment is what its name implies – competitive. People compete for part- and fulltime jobs in the community that pay minimum wage or higher Supported employment is also what its name implies A support service like Kentucky’s Office of Vocational Rehabilitation, or Voc Rehab for short, helps people with intellectual disabilities find a good job and maintain that job by offering supports that help them be successful.
Olivia Ash, 24
of Employment:
Hours Worked: 6 hours/week
Responsibilities: I fold clothes, pick up toys, books, and other things and take them back to their proper place.
What Does Having a Job Mean to You?:
I really like my job, and I know that I’m good at it
Sheltered employment is better known as sheltered workshops. These are settings where people with disabilities attend on a daily basis and have the opportunity to do subcontract work. They are sometimes paid minimum wage but are often paid according to how much they can accomplish compared to workers without disabilities. Often that is a few cents on the dollar.
How Finding Work Works
It’s often said that finding work for people with intellectual disabilities begins at the IEP table. That’s because, by law, when children with disabilities turn 16, they must be present at the IEP table and must be afforded transition services related to training, education, employment, and, where appropriate, independent living skills In reality, however, it begins much sooner than that.
“Just like with typical children, it begins with parents finding out what interests their children with Down syndrome, what their skills are, and what they want to do when they grow up,” Brewer said
(Continued on page 10)
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Place
Kid to Kid in Brighton Place Shops
Tarenne Maher, 24
Place of Employment: Luna’s Coffee, Wine, and Butterfly Café and Chicken Salad Chick
Hours Worked: Lunch hours/four days a week
Responsibilities: At Luna’s I am a waitress so I do customer service - meet and greet customers, take their plates and cups when they finish eating, and clean the table for the next customer. At Chicken Salad Chick I wash dishes.
What Does Having a Job Mean to You?:
When I was in my early 20s, I was in college and started thinking about my future and wanting to get a job after graduating. That’s when I found Luna’s and started working there. When I first started working at Luna’s and got to know the owners, Alison and Web, they felt like family. They took me in and made me feel loved and cared for. Luna’s is my safe space I feel free and safe to be myself there, and I always feel welcome Working at Luna’s is the best of both worlds because I love coffee, and the drinks they serve there. Butterflies are also my favorite insect, so working at a butterfly café is fun.
It also involves creating an environment where a child can obtain the self-confidence and self-awareness to find the right fit when the time comes to enter the workforce.
“You’re basically helping set the stage for success,” Brewer said
When a child does reach the age of 16 and the transition services are being offered, Whaley said the next best step is to be connected with Voc Rehab, which is a federal program administered by the state of Kentucky that assists people with disabilities in achieving suitable employment and independence. Every state has a similar agency.
“Hopefully in high school, students and their families are connected to Voc Rehab – not just given a phone number that you should call But really connected to where families set up an appointment before they finish high school to become eligible for services,” Whaley said.
In short, Voc Rehab offers publicly funded resources to help people with disabilities like Down syndrome find work – resources that Whaley insists are too valuable to pass up. Even if your child is not connected during high school, he or she can still apply for services from Voc Rehab later on
“You don’t have to go through Voc Rehab, but if you want access to those publicly funded services, Voc Rehab is the starting point for that,” she said.
Those services include setting your child up with an employment counselor, contracted through an outside agency, whose first job is to get to know the child personally.
“We call that discovery,” Whaley said. “That’s the key to figuring out good employment for folks with intellectual disabilities, for folks with Down syndrome. That’s getting to know someone beyond the label, beyond the evaluations and scores, the IEP It’s asking, ‘Who is this person? What motivates them? What are they good at? What do they like to do? What will it take to be successful?’”
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She continued “So, even if you serve all people with Down syndrome, they’re going to be different and what they want to do is different, their gifts and their skills are different. … People are different so the jobs they’re going to want to pursue are different.”
Once discovery is complete, the employment counselor gets busy helping the job seeker find a job. And not just any job – a job that fits the person and offers the type of culture and framework that he or she needs to be successful.
“That’s with any child,” Whaley said. “I think the reason why perhaps employment has been so low for people with disabilities is that we’ve said here are the jobs, now let’s fit you into one of those. It doesn’t work that way for any human being ”
A good employment counselor will likewise be familiar with employers and the culture of their companies or businesses. That comes in handy especially when considering the types of supports a person with disabilities might need – if at all. For example, Whaley said some people might need a to-do list written out for them
to follow while on the job; others might need instructions in picture format; still others might need tasks they can perform while sitting Long-term or ongoing supports look different for everyone.
“That’s the third step in this process – to help make sure the supported employee understands expectations, meets coworkers, learns routines and the job,” Whaley explained
Another service provided by Voc Rehab, thanks to the 2014 Workforce Innovation Opportunities Act, is PreEmployment Transition Services, or Pre-ETS Actually, Voc Rehab is required to offer Pre-ETS at transition age, but it depends on what part of the state or which school system you are in as to how they are provided.
Pre-ETS are activities that provide an early start at job exploration for students with disabilities and are designed to assist with transitioning from school to postsecondary education or employment. They include: job exploration counseling, work-based learning experiences, workplace readiness training, post-secondary counseling, and instruction in self-advocacy.
(Continued on page 12)
Conor Healy, 25
Place of Employment: Brannon Crossing Kroger
Hours Worked: 8 hours/week
Responsibilities: I bag groceries, help put carts away, help customers take their groceries to their cars, and smile and greet people
What Does Having a Job Mean to You?: Having a job makes me feel like a responsible adult. I enjoy making my own money and working in my community.
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The Parents’ Role
The role of the parents in helping their children with Down syndrome find suitable employment varies. As with any child, if you know someone who works for a company or owns a business and you feel comfortable talking to them about a job, then go for it. There’s nothing to say that’s the wrong approach After all, it’s often who you know that can lead to success
However, Whaley said the employment process should be consumer driven. “It should be the job-seeker’s choice about where they want to work and what they want to do.”
“It’s important for families to be involved,” added Brewer “Especially as the child grows up and should be exploring what they want to do and what they’re successful at. But it doesn’t have to fall on the parents to go it alone. The programs are designed to assist – and they work.”
“So , even if you serve people with Down syndrome, they’re going to be different and what they want to do is different, their gifts and their skills are different. ...People are different so the jobs they’re going to want to pursue are different.”
Katie Wolf Whaley
Caitlin Stringer, 27
Place of Employment: Chick-fil-A
Hours Worked: 2 hours/day, 4 days/week
Responsibilities: I deliver orders to customers in their vehicles, in the drive-through, and curbside.
What Does Having a Job Mean to You?: I love making my own money. It allows me to go shopping (my favorite thing to do)! And I feel more independent. Also, I like making friends with my coworkers.
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KentuckyIsanEmploymentFirstState
KentuckyisanEmploymentFirstState,meaningthatallKentuckianswith disabilities,regardlesstheimpactoftheirdisability,shouldhaveaccessto “competitiveintegratedemployment”asthefirstandpreferredoption.Quite simply,itmeansthateveryoneshouldhavetherighttowork.
Whatiscompetitiveintegratedemployment?Workthatisperformedonafulltimeorpart-timebasisforwhichanindividualis:
Earningcompensationatoraboveminimumwageandcomparabletothe customaryratepaidbytheemployertoemployeeswithoutdisabilities performingsimilardutiesandwithsimilartrainingandexperience;
Receivingthesamelevelofbenefitsprovidedtootheremployeeswithout disabilitiesinsimilarpositions;
Workingatalocationwheretheemployeeinteractswithotherindividuals withoutdisabilities;and
Receivingopportunitiesforadvancementwhenappropriate,similartoother employeeswithoutdisabilitiesinsimilarpositions.
FromtheKentuckyCareerCenteratkygov
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A Guide to Emotional and Behavioral Strategies
The DSACK Lending Library is full of wonderful resources for parents/caregivers, grandparents, teachers, and self-advocates. This issue, we’re featuring “Mental Wellness in Adults with Down Syndrome” by Dennis McGuire, Ph.D., and Brian Chicoine, M.D.
Is it inevitable that people with Down syndrome will experience mental health problems? After all, there are biological factors and common stresses that can make people with Down syndrome more prone to mood, emotional, and other mental health problems.
But no, say Dennis McGuire and Brian Chicoine, it is not inevitable.
“That is one of the reasons we wrote this book – to point out ways that parents, adult siblings, teachers, paid caregivers, and others can effectively promote and maintain mental wellness in adolescents and adults with Down syndrome,” they write in the introduction to “Mental Wellness in Adults with Down Syndrome.”
They continue, saying that they want to make it easier for other practitioners to recognize mental health problems in people with Down syndrome and pursue treatments that will help them regain their “normal abilities and outlook on life.”
“We also hope to clarify that there are some common characteristics of Down syndrome that can be mistaken for evidence of mental illness but are nothing more than harmless quirks or useful coping strategies,” they write
The book is written for parents, caregivers, and practitioners, but it is also aimed at helping adults with Down syndrome actively take part in the process of achieving good health. An entire section is devoted to promoting and addressing their mental health. Chapters on family and community support, selfesteem, and self-image, communication skills, and more take readers on an educational journey.
Whew! And that’s just for starters. Upon reading this comprehensive book, you’ll also learn about mental illness and its precipitants, assessing mental illness, and a variety of mental disorders (e.g., mood disorders, anxiety disorders, autism, obsessive-compulsive disorder, etc.).
About the Authors: Dennis McGuire and Brian Chicoine are the directors of the Adult Down Syndrome Center of Lutheran General Hospital in Park Ridge Illinois.
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