Spring 2024

Down Syndrome Association OF CENTRAL KENTUCKY

SPRING 2024

PARENT’S PERSPECTIVE

DSACK SPOTLIGHT

FEATURE STORY

Accepting the ‘Unexpected’

Fun and Learning Never Ends

On the Job Front

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KEEPING UP WITH DSACK

Contents PAGE 3

FROM THE EXECUTIVE DIRECTOR

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PARENT'S PERSPECTIVE

On the Cover: Olivia Shorr

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DSACK SPOTLIGHT

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FEATURE STORY: EMPLOYMENT

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FROM THE DSACK BOOKSHELF

STAFF Executive Director: Traci Brewer Education Coordinators: Jean Bryant and Elaine Burns Medical/Community Outreach Coordinator: Courtney Elbert

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EMILY’S WORD SEARCH

Office Coordinator/Magazine Editor: Terri McLean Administrative Assistant: Emily Wright OFFICERS Chairperson: Corey Hawes Versailles, KY

Treasurer: Lee Ann Mullis Georgetown, KY

Secretary: Anna Bullard Lexington, KY

BOARD OF DIRECTORS Christopher Azbell Lexington, KY

Nikki Davidson Lexington, KY

Kristen Dieruf Lexington, KY

Shawn Fear Lexington, KY

Amy Roberts Somerset, KY

Elizabeth Russell Paris, KY

Margot Schenning Lexington, KY

Matt Shorr Lexington, KY

Caryn Sorge Lexington, KY

Jonathan Wright Lexington, KY

Laura Yost Lexington, KY

CONTACT INFORMATION Down Syndrome Association of Central Kentucky 2265 Harrodsburg Road, Suite 370, Lexington, KY 40504 859-494-7809 Website: www.dsack.org Email: dsack.org@gmail.com DSACK Bylaws and financials are open for review, and the Board of Director meetings are open to our community. Agenda items are determined well in advance.

DSACK does not endorse the opinions or views expressed by third parties or the products or services they offer. Reference to any specific commercial products, brand names, processes or services, or the use of any trade, firm or corporation name is for the information and convenience of the public and does not constitute an endorsement.

The DSACK magazine is published by the Down Syndrome Association of Central Kentucky, 2265 Harrodsburg Road, Suite 370, Lexington, KY 40504.

Stay Connected You can now register for events right from our website calendar at www.dsack.org.

To receive our weekly email blitz, email Terri at: dsack.org@gmail.com.

To join our private Facebook group where you can communicate with other DSACK families, go to https://www.facebook.com/groups/82674673490/ and request to be added to the group.

To “like” our official Facebook page and receive updates from our association, go to https://www.facebook.com/TheDownSyndromeAssociationofCentralKentucky.

To contact us by phone, call 859-494-7809; by email, send to dsack.org@gmail.com.

Follow DSACK@DSAofCentralKY on Twitter.

Follow DSACK_DSACK on Instagram.

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!

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.

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!”

PARENT'S PERSPECTIVE

By Randy Stringer

From left, Jim, Olivia, and Jane Ash

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.

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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

to hold her to a lower standard. Olivia persevered and

made contact with mine and she quickly ran to my side.

graduated from Lafayette High School in 2018 with a state

Looking up at me, she points to her brother’s homework

issued high school diploma. Once again, she achieved the

and says “Me?”. I picked her up and set her on my lap and,

unexpected.

as usual, I was greeted with a big smile and a hug. She

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

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

opened so many wonderful opportunities for Olivia. Through

unexpected blessing in our lives. It did not take long for

DSACK, Olivia has expanded her world to include employment

Jane and me to realize that Olivia could achieve the

and furthering her education. DSACK affords her

unexpected with just a little help from her family and

opportunities to socialize with her peers and she has gained

friends.

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

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 spotlight

DSACK’s Fun and Learning Never Ends!

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.

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Playgroup

Socials

Tutoring

Friends

Community

GiveBacks

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FEATURE STORY

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.”

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.”

“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.”

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.”

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Olivia Ash, 24 Place of Employment: Kid to Kid in Brighton Place Shops 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.

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.

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) 9

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.

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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?’”

She continued. “So, even if you serve all people with

to follow while on the job; others might need instructions in

Down syndrome, they’re going to be different and what

picture format; still others might need tasks they can perform

they want to do is different, their gifts and their skills are

while sitting. Long-term or ongoing supports look different for

different. … People are different so the jobs they’re going

everyone.

to want to pursue are different.”

“That’s the third step in this process – to help make sure Once discovery is complete, the employment counselor gets busy helping the job seeker find a job. And not just any

the supported employee understands expectations, meets coworkers, learns routines and the job,” Whaley explained.

job – a job that fits the person and offers the type of culture and framework that he or she needs to be successful.

Another service provided by Voc Rehab, thanks to the 2014 Workforce Innovation Opportunities Act, is Pre-

“That’s with any child,” Whaley said. “I think the reason

Employment Transition Services, or Pre-ETS. Actually, Voc

why perhaps employment has been so low for people with

Rehab is required to offer Pre-ETS at transition age, but it

disabilities is that we’ve said here are the jobs, now let’s fit

depends on what part of the state or which school system you

you into one of those. It doesn’t work that way for any

are in as to how they are provided.

human being.”

Pre-ETS are activities that provide an early start at job A good employment counselor will likewise be familiar

exploration for students with disabilities and are designed to

with employers and the culture of their companies or

assist with transitioning from school to postsecondary

businesses. That comes in handy especially when

education or employment. They include: job exploration

considering the types of supports a person with disabilities

counseling, work-based learning experiences, workplace

might need – if at all. For example, Whaley said some

readiness training, post-secondary counseling, and instruction

people might need a to-do list written out for them

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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Kentucky Is an Employment First State Kentucky is an Employment First State, meaning that all Kentuckians with disabilities, regardless the impact of their disability, should have access to “competitive integrated employment” as the first and preferred option. Quite simply, it means that everyone should have the right to work.

What is competitive integrated employment? ​Work that is performed on a fulltime or part-time basis for which an individual is: ​ ​arning compensation at or above minimum wage and comparable to the E customary rate paid by the employer to employees without disabilities performing similar duties and with similar training and experience; Receiving the same level of benefits provided to other employees without disabilities in similar positions; Working at a location where the employee interacts with other individuals without disabilities; and Receiving opportunities for advancement when appropriate, similar to other employees without disabilities in similar positions.

From the Kentucky Career Center at ky.gov

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FROM THE DSACK BOOKSHELF

A Guide to Emotional and Behavioral Strategies

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

The DSACK Lending Library is full of wonderful

for evidence of mental illness but are nothing more

resources for parents/caregivers, grandparents,

than harmless quirks or useful coping strategies,” they

teachers, and self-advocates. This issue, we’re

write.

featuring “Mental Wellness in Adults with Down Syndrome” by Dennis McGuire, Ph.D., and Brian Chicoine, M.D.

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

Is it inevitable that people with Down syndrome

achieving good health. An entire section is devoted to

will experience mental health problems? After all,

promoting and addressing their mental health.

there are biological factors and common stresses that

Chapters on family and community support, self-

can make people with Down syndrome more prone to

esteem, and self-image, communication skills, and

mood, emotional, and other mental health problems.

more take readers on an educational journey.

But no, say Dennis McGuire and Brian Chicoine, it is not inevitable.

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

“That is one of the reasons we wrote this book – to

a variety of mental disorders (e.g., mood disorders,

point out ways that parents, adult siblings, teachers,

anxiety disorders, autism, obsessive-compulsive

paid caregivers, and others can effectively promote

disorder, etc.).

and maintain mental wellness in adolescents and adults with Down syndrome,” they write in the

About the Authors: Dennis McGuire and Brian

introduction to “Mental Wellness in Adults with

Chicoine are the directors of the Adult Down

Down Syndrome.”

Syndrome Center of Lutheran General Hospital in Park Ridge Illinois.

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EMILY’S CHALLENGE

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NONPROFIT ORG U.S. POSTAGE PAID LEXINGTON, KY PERMIT #591

Our Mission

2265 Harrodsburg Road, Suite 370 Lexington, KY 40504 Return Service Requested

To celebrate and support people with Down syndrome and their families and to educate ourselves and others throughout Central and Eastern Kentucky.