To celebrate and support people with Down syndrome and their families and to educate ourselves and others throughout Central and Eastern Kentucky.2022 Alla Blu DeVary Photo by Botts Photography
Executive Director: Traci Brewer
Education Coordinator: Jean Bryant
Medical and Community Outreach Coordinator: Courtney Elbert
Communications Coordinator – Julia Muller
Office Coordinator – Terri McLean
Administrative Assistant – Emily Wright
Chairperson: Kelley Nunnelley Lexington, KY
Treasurer: Lee Ann Mullis Georgetown, KY
Secretary: Anna Bullard Lexington, KY
Christopher Azbell Lexington, KY
Jay Castaneda Lexington, KY
K.C. Cumbermack Lexington, KY
Corey Hawes Versailles, KY
Jonathan Rouse Versailles, 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
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
review,
DSACK does not endorse the opinions or views expressed by third parties or the products or services they offer. Ref erence 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 newsletter is published by the Down Syndrome Association of Central Kentucky, 2265 Harrodsburg Road, Suite 370, Lexington, KY 40502
Recently our staff was able to attend the National Down Syndrome Congress annual convention. We came back with very valuable information and resources. There were several workshops related to health concerns and behavioral concerns. Just like everything related to the pandemic, we are just realizing some of the adverse reactions being isolated has had on so many. For some individuals with Down syndrome, this has led to regression in skills, communication and social skills. For some, it has led to new behavioral and mental health issues such as obsessive-compulsive tendencies, aggressiveness, loss of speech, decline in life skills and more. Thankfully, there are some solutions, so be sure to read on.
I talk to many parents who make sure their child with Down syndrome has all of the doctor’s appointments, medical tests, therapy evaluations and interventions to ensure their child can live their best life. However, I find parents are sometimes reluctant to have their child assessed for behavior support or behavior therapy. Some parents are concerned that this will “label” their child, and I can understand that concern, but I want to tell you it just isn’t true. We know that early intervention is key to success, and that rings true for behavior management.
Another thing to note is that behavior support or behavior therapy does not mean your child is “bad,” hard to manage or aggressive. My daughter, Emily, who was born with Down syndrome, receives behavior support to help her with her communication, daily life skills and social interaction. The thing to remember is that all behavior is a form of communication. If your child has limited verbal communication, they have to be creative in
how they get their point across. Sometimes behaviors are due to diet concerns, such as a gluten allergy or acid reflux, thyroid levels can be an issue, or chronic ear infections, which makes quality medical care and routine annual tests that much more important. Behaviors can appear when there is a change to routine, family dynamics or households.The list can go on and on, but the key is that seeking help for behavioral issues is no different than seeking help for medical issues or educational issues. So, get the scoop and carry on! (See more on pages 6-8.)
You’ll also want to read Rachel Michel’s inspirational story about her prenatal diagnosis and how she shared that with her students. It’s an amazing story that will definitely touch your heart! And, if you haven’t heard about the amazing experience our adults had this summer during our Next Steps: Learning for Life summer program, you are missing out!
David Taylor, who was one of the instructors, shares his insight with us. You can also hear firsthand from our Next Steps students on our DSACK podcast at downrightcool.podbean. com. You’ll be smiling for the rest of the day, I promise.
Hope to see you soon!
Hundreds of people descended on Masterson Station Park in Lexington the second Saturday in September to celebrate the Down syndrome community at the Family Fun Day and Walk. It was the first time in three years the highly anticipated event has been held in person, thanks to COVID, and the mood was, indeed, celebratory. Although the fundraising continued at presstime, it looked to be a good year - well over $120,000 was raised! Special thanks to all the teams for their fundraising efforts, our exhibitors and our sponsors - the people who make this important fundraiser a resounding success each year. Mark your calendars for next year; the event will be on Sept. 9.
By David Taylor
There is no such thing as typical. Everyone is wholly unique. The Next Steps program DSACK held this summer for adults demonstrated this beautifully. It was interesting to watch the students interact with each other. Even more interesting to watch them accept each other as unique individuals.
Next steps provided the perfect environment for the students to shine. To be themselves and not worry about conforming to a world built without them in mind. There is no doubt in my mind how much better our world would be if they had a seat at every single table that creates the policies and makes the decisions concerning our world.
Designed to be similar to the governor’s scholars program, Next Steps offered classes in graphic arts, cooking, music, the environment and employment skills. Lunch was provided every day and it was fun watching the students eat together. Then they spent the afternoon together playing
games and working on team-building skills.
I was offered a unique perspective, first as a parent of a student but also as one of the teachers. I got to interact with the students as well as watch my own son flourish as a student. Eli enthusiastically woke up every morning and got ready for class. He grabbed his backpack and off he went. While at class he saw old friends and met new ones. He enjoyed learning with others. By the end of three weeks, he was beginning to talk about new things he wanted to try and was teaching us etiquette at the dinner table. He had a great time participating in the classes.
Given the right support our students can grow and develop just like anyone else. In fact, no one grows and develops without support. “Typical” students are offered support all the time and we call it tutoring or study group, but it never gets called support. How odd it is that we talk of people with Down syndrome in terms of what we think they cannot achieve. Then it is justified as if they are unaware of what is going on.
In fact, they do comprehend everything
around them. They may not express it the same way as others and they sometimes may lack the vocabulary to do so, but they do have the ability to comprehend what is going on in their world. That is why the Next Steps program is so important. It provides our students with the opportunity to shine and share the wisdom that has been graced upon them.
It is my hope that the Next Steps program has served as a jumping off point for the students who attended. I hope the classes inspired them to explore new interests and try new things. I know some students were inspired, because they told me they were inspired to reach for what life has to offer. I hope the parents and siblings who attended family day were inspired to help their young adults reach for those dreams.
David Taylor is an avid reader, gardener and tea drinker. He has worked as a graphic designer, team leader, web designer and home school teacher. Currently he develops and works on freelance projects. David, his wife Cindy and their son Eli are all natives of Lexington.
David, left, Cindy and Eli Taylor
Photos by Botts Photography and Maggie Mae Photography
As parents, part of our job is to make sure our children are getting everything they need for success. Parents of children with Down syndrome are introduced to services such as speech language pathology, occupational therapy and physical therapy almost immediately after birth. Research has shown that early intervention results in much better outcomes.
However, not all parents know about behavior therapy or behavior support. In this article, Samantha Orihuela, MS, BSS, breaks it all down for us. Behavior therapy or behavior support need not carry a negative connotation. Just like speech language pathology, occupational therapy and physical therapy, it is another tool to help our students become the best version of themselves.
A. Behavior Therapy and Behavior Management and Supports are both highly structured, data-driven, evidence-based practices that focus on improving specific behaviors, such as social skills, communication, reading and academics, as well as adaptive learning skills, hygiene, grooming, independent task completion and play skills, functional and social living skills, executive functioning skills, and job competence, all while working to reduce and replace problematic or target behaviors of concern.
The difference between Behavior Therapy (BT) and Behavior Supports (BS) are based on who and where services are provided and by whom the funding is through.
Behavior therapy or applied behavior analysis (ABA) occurs in a clinic setting for 25 to 40 hours per week, with a Board-Certified Behavior Analyst (BCBA), Licensed Behavior Analyst (LBA) and a Registered Behavior Technician (RBT). These services are paid for by private insurance or private pay only. The BCBA creates and writes the plan for the individual and the RBT is trained on how to implement the plan with the individual in the clinical setting. ABA often must be deemed medically necessary for funding by insurance to occur.
Behavior Management and Behavior Support Services can occur in the home, community, clinic or school settings and are often between three to five hours per week with a Board-Certified Behavior Analyst (BCBA), Behavior Support Specialist (BSS) or Licensed Behavior Analyst (LBA). These services are paid for through Medicaid and Waiver services such as the Michelle P Waiver and Supports for Community Living (SCL). The benefit of this service is that it is available in the home, community and school setting, and services are determined, plans are written, parent training is completed by, and services are implemented by the same clinician working with the individual.
A family should reach out to an agency that offers behavior Therapy or Supports when:
• Behaviors of concern arise and persist for any period of time or changes in behavior occur (behaviors out of the individual’s normal routine or functioning level)
• Self-harm or self-injurious behaviors are present (head banging, biting, hitting)
• A lack in communication is evident (unable to communicate using any form of language)
• Transitions to new environments or activities occur (school, church, doctor, dentist, sports, family activities, vacation)
• A lack of daily living skills is present (brushing teeth, bathing,
dressing, organizational skills)
• A lack of social skills is evident (inability to take turns, wait, participate with others, remain safe in various environments)
• Poor or lack of executive functioning skills (ability to plan, organize materials, or inability to create maintain or follow a schedule)
Typically, in my experience, most families reach out between the ages of 4 and 10 years old. However, it should be noted that if your child has a diagnosis and you feel any of the above characteristics or situations may be present at that time or in the future, I recommend getting on the Michelle P Waiver waitlist immediately after a diagnosis is provided. The waitlist is currently at a five- to seven-year wait unless emergency waivers are granted, and emergency waivers are rare. Therefore, getting on the list early will allow you to access services later in your child’s life. Once you have the waiver, you can add and remove services as needed during your annual Plan of Care meeting.
Some benefits of Behavior Supports are improvements in the following:
• Social skills
• Coping skills
• Transition and task acceptance skills
• Communication skills
• Executive functioning and reasoning skills
• Reading, and academics
• Independent hygiene, grooming, and daily living skills
• Independent task completion and play skills
• Functional and social living skills
• Job competence
A
. A Behavior Support Specialist works with individuals of varying abilities, their support staff and families to learn techniques and skills to reduce and replace problematic behaviors occurring within the home, school or community – all while increasing appropriate behaviors and skills. Service plans can include: Discrete Trial Training (DTT), Acceptance and Commitment Therapy (ACT), Cognitive Behavior Therapy (CBA), activities of daily living training, toilet training, Community-Based Instruction (CBI), play therapy training, academic instruction, Functional Behavior Assessments (FBA), Behavior Support Plans (BSP), caregiver training, and problem behavior reduction.
The first step in evaluating a child or adult with Down syndrome who presents with a behavior concern is to determine if there are any acute or chronic medical problems related to the identified behavior. The following is a list of the more common medical problems that may be associated with behavior changes.
• Vision or hearing deficits
• Thyroid function
• Celiac disease
• Sleep apnea
• Anemia
• Gastroesophageal reflux
• Constipation
• Depression
• Anxiety
Evaluation by the primary care physician is a vital component of the initial work-up for behavior concerns in children and adults with Down syndrome.
The behavioral challenges seen in children with Down syndrome are usually not particularly different from those seen in typically developing children. However, they may occur at a later age and last longer. For example, temper tantrums are typically common at ages two and three, but for a child with Down syndrome, they may begin at three to four years of age.
When evaluating behavior in a child or adult with Down syndrome it is important to know the individual’s receptive and expressive language skill levels, because many behaviors are related to frustration with communication. Many times, behavior issues can be addressed by finding ways to help the person with Down syndrome communicate more effectively.
Behavior changes in adults with Down syndrome have many potential causes. Some individuals have difficulty with the transition into adulthood as they face the loss of social networks, departure of older siblings, death of loved ones, changes in housing, and the challenge of obtaining meaningful work. As individuals age, some experience vision and/or hearing loss. These losses can cause significant behavioral changes if they are not recognized and treated. Hypothyroidism, celiac disease, obstructive sleep apnea, depression, regression, and Alzheimer’s disease are other health concerns that can cause behavior changes. Regular checkups with medical professionals who are familiar with the healthcare needs of adults with Down syndrome are the best way to quickly identify or avoid these conditions.
Regression is a relatively new diagnosis that refers to a loss of previously accomplished skills that usually occurs in late childhood or early adulthood. The loss can occur over weeks or months and might include skills like language, motor abilities, self-care, and social interaction. Regression can have a few different causes and should be thoroughly investigated by a medical doctor. It is recommended you schedule an appointment with your doctor if you notice your loved one has begun withdrawing from friends and family, speaking less, decreasing eye contact, engaging in compulsive behaviors, hallucinating, or acting aggressively. Regression is different from Alzheimer’s disease and can be reversible in some situations with treatment.
While Alzheimer’s disease occurs earlier and more often in adults with Down syndrome than in the general population, not every behavioral or cognitive change in an adult with Down syndrome is due to the onset of Alzheimer’s disease. Alzheimer’s disease has an average age of onset of 54 years in individuals with Down syndrome.
Samantha Orihuela, MS, BSS, with her family, from left, husband John, Scarlett, Joshua, Elijah and BriannaQ. When should a family reach out regarding behavior needs?
FROM
Evaluations are completed using similar strategies in varying orders depending on the professional. However, the steps listed below are important in identifying the needs of the client and family, planning, training, and implementing services effectively:
• Family interviews and rating scales of abilities and needs
• Observations of the individual in various home and community settings
• Observations of the individual participating with various family, staff or community workers
• Functional rating scales and assessments completed by the clinician
• Completion of the Functional Behavior Plan outlining the, findings, data presentation and recommendations of the clinician
• Positive Behavior Support Plan (PBSP/BSP) outlining the present levels of performance in all areas, goals for reduction or increase in behaviors, benchmarks for success, strategies for prevention, reaction strategies, and skills to be taught and implemented
• Behavior Intervention Committee (BIC) approval of the plan
• Parent and staff Training on the plan, strategies, skills, and goals
• Modeling and implementation of the BSP with parent and staff observing the clinician to understand and learn the strategies and activities to promote growth
• Implementation of the BSP in the home, community and clinical setting to continue teaching skills, reducing target behaviors, increasing independence and appropriate behaviors across settings and individuals
• Ongoing monitoring and collaboration between all parents and staff working with the individual to reduce regression and facilitate growth and mastery of skills
Currently in Kentucky, the majority of school systems have behavior specialists on staff at the district level to travel between schools and assist in creating Behavior Intervention Plans (BIP).
A BIP is a very basic school version of the Behavior Support Plan (BSP). Therapists who see individuals through the Medicaid or Waiver services are not be able to bill while in the school setting due to funding sources for schools and waivers overlapping. However, observations, strategy sessions, training, planning and consultations between the Behavior Support Specialist and staff working with the individual is considered best practice to promote consistency and continuity of supports and is often done after school hours or completed without billing. Individuals who attend ABA style clinics for 25 to 40 hours per week are often not attending school simultaneously.
A.
Parent involvement and training are an essential part of their child’s treatment and the child is more likely to be successful. Parent training sessions are customized to meet the needs of your family
and child. Clinicians work to train parents on the skills, strategies and goals listed in the BSP as they are the core of this intensive training and are with their child the most and have the most influence on their children’s growth and progress. Parents can also learn to incorporate effective behavior-change strategies in the child’s everyday life, in their daily routines and daily activities while clinicians are able to focus intensely on a three- to five-hour block of time per week. Parent training provides the opportunity to receive guidance and support from a trained BCBA or BSS who specialized in creating the positive support and intervention plans.
Regular Parent Training and Involvement increases:
• Child success rates
• Treatment outcomes
• Communication skills
• Social skills
• School success rates
• Generalization of skills across individuals, materials and settings
• Reduces regressions
• Supports maintenance and ongoing learning of skills
Samantha Orihuela, MS, BSS, is a Positive Behavior Support Specialist. She received a master’s in moderate and severe Disabilities from the University of Kentucky in 2014 and her certification in Applied Behavior Analysis from the University of Louisville in 2017. Orihuela is passionate about teaching and assisting individuals of all ability levels and their families various ways to reach personal goals and meet their individual needs. Her work is focused on functional and life skills, basic and functional communication, social skills acquisition, and independent living skills and training. Samantha lives in Central Kentucky with her husband John and four children, Joshua, Brianna, Scarlett and Elijah.
As soon as Rachel Michel found out that the baby boy she was carrying had Down syndrome, she began finding out everything she could about the diagnosis. She also surrounded herself by a network of support that included the fourth- and fifth-graders she teaches at Meadowthorpe Elementary School in Lexington.
So supportive were Michel’s students, in fact, that when they heard about Benji’s diagnosis, they came up with a special project to educate themselves and others about Down syndrome.
“I wanted to make sure they had buy-in, so I told them, ‘I’m learning all about this do you want to go along with me?’,” she said.
And did they ever.
Michel and the students embarked on a week of learning about Down syndrome, what inclusivity is and ways to be inclusive, and what raising awareness means. Then the students spent time making posters to hang around the school. Perhaps most importantly, they prepared presentations to give to other classrooms so others would learn, too. “It was really amazing,” Michel said. Once they began to learn more, the students also began thinking about ways to contribute to the Down syndrome community, specifically DSACK, which
had likewise lent its support to Michel, her husband Lucas and 3-year-old son Jack.
“They were very much wanting to do something for the Down syndrome community because they wanted to be friends. They actually came up with the
idea of doing some of the fundraising for DSACK,” she said.
The students incorporated the fundraising efforts into a celebration of World Down Syndrome Day in March that also included students, teachers and staff wearing mismatched socks. They turned it into a competition among classes, with the class raising the most money earning a pizza party. The grand total raised? Nearly $1,600.
“I wasn’t expecting to raise as much money as we did,” Michel admitted. “I thought $500 tops. My classroom alone raised $700.”
The DSACK staff was invited to participate in the winning class’s pizza party and receive the funds raised firsthand. “It was overwhelming to see the students be so interested in Down syndrome and want to learn everything they could about it. It made my heart so happy,” said Courtney Elbert, DSACK education coordinator and mother of Sam, who has Down syndrome.
Now that Benji is here – he was born in August – the students and their parents continue to show their support to Michel and her family. And the Michel family continues to be involved with the DSACK community.
“It’s a really responsive community –we’re creating a tribe,” she said.
As part of their project, Rachel Michel’s fourth- and fifth-graders read the book Just Ask! by Supreme Court Justice Sonia Sotomayor. It’s a book about the differences that make each person unique. “They loved it,” Michel said.
“Including people that are different than you makes a huge impact on our world, society, happiness and friendship.”
Student Molly W
“I learned that working together can make a change for people who are different than you.”
Student Calvin W.
Rachel and Lucas Michel with their sons Jack and BenjiQ. How are individuals evaluated?
Q. Can behavior therapists go into school?
Q. How and why should parents be involved with Behavior Therapy?
In this issue, we turn the tables on Emily Wright and ask her about attending the National Down Syndrome Congress annual convention in New Orleans.
A: I attended the GLOBAL Research and Medical Care Roundta ble, “The Weight Health Puzzle for Teens and Adults with Down Syndrome and Their Circles of Support,” “The Foundations of Friendship,” “Working on a Professional Presence,” “The Impro vaneer Method,” “Creating an Extra Special Life,” and “Addressing the Boundary Puzzle: Seeking Clarity among the Many Pieces.” I also attended the youth and adult dance on Saturday night, which was fun.
A: Basically, just being part of it. And getting lots of new informa tion out of each session. And meeting new friends. It was special seeing everyone’s skill level and what they wanted to learn.
A: I really enjoyed “Working on a Professional Presence” with Jes sica Short. She talked about filling out applications and dressing for success. Even though I already have a job, it was very helpful. I wasn’t sure what I’d get out of it, but then it just clicked. My favorite though was “The Foundations of Friendship.” The basis of that was how to understand your friends and be a better friend, how to interact. Building up those skills of friendship. It’s all about caring and having a good attitude. “The Improvaneer Method” was also fun. They use the Improvaneer Method to teach us how to advocate for yourself and think uick on your feet. Also good for character development.
A: Professional development for my job as administrative assis tant for DSACK.
A: That we have so much information to share with everyone. Information that we are passionate about.
The “life-changing” Next Steps program for adults with Down syndrome received rave reviews from one of the program’s grantors, U.S. Bank Foundation, ac cording to DSACK Executive Director Traci Brewer.
Kate Boudreaux, left, Blair Osbourne and Julia Steinman at Next Steps.
“They were so pleased with the program we offered the 15 students who attended Next Steps - Learning for Life this summer,”
Brewer said. “They specifically liked the way the program provided a college-like experience while learning about business etiquette, independent living skills, career exploration and so much more.”
“This organization was recommended to the U.S. Bank Foun dation by our employees in the local market. Through the bank’s outreach into our communities and understanding the needs of their local communities, we are able to fund projects like these that benefit deserving individuals in their life pursuits,” said Jeff Mills, U.S. Bank community affairs manager.
When kids play, they imagine a world where anything is possible. That’s why U.S. Bank supports nonprofit and neighborhood-based organizations in our community. We’re committed to building safe places where kids can dream big and have fun. usbank.com/communitypossible
U.S. Bank is proud to support the Down Syndrome Association of Central Kentucky.
Nicholasville Road Branch 2020 Nicholasville Rd. Lexington, KY 40503
Our grandson, Will, was born Dec. 7, 2007. He had brown hair and eyes and Down Syndrome. We were crushed by the diagnosis but determined that he would be given whatever he needed to reach his full potential.
We waited so long for him to roll over, sit up, grasp a toy, furniture surf. Sometimes we work for weeks or months on a skill, breaking it apart to its smallest movement or response. One day out of the blue, Will puts them all together and with a big smile on his face away he goes. Now he is running! What have we done?
These small accomplishments do not come easily. Our calendars and conver sations are filled with acronyms (i.e., OT, PT, ST, DI). Many hours of love and sup port were required and were freely given by family, friends, and therapists.
Early Start is Will’s first chance to ex plore his world on his own. The list of things he needs for Early Start includes a backpack that will hold his coat and other necessary items.
The information also indicates that Will should be able to take off his coat, unzip his backpack, place his coat in it and zip it up.
This innocent instruction was almost overwhelming. How can Will do this on his own? He can’t, but with help he just might.
So, we begin:
1. Unzip coat
2. Take coat off
3. Unzip backpack
4. Put coat in backpack
5. Zip backpack
So easy to write but each step is another challenge for Will. I remember reading in some of the Down syndrome literature that a skill or activity must be repeated 2000 times or more before it is internalized.
The first day of Early Start comes. Tonya, Will’s mom, and I take Will to school. He insists on carrying his backpack. We help him put it on. It ob scures his body so that only his arms and legs can be seen.
He goes to sit on the bench with the other children in his class. He checks out his classmates and they size him up as well. Will is a good head shorter than any of his classmates but he is not intimidated. He smiles, says “hi,” and waves.
It is a bittersweet moment as we face the reali ty that we must allow Will the space to be himself. We can only sign “I love you” and say, “bye-bye” and “see you later” as we watch the backpack walk away.
Linda D. Houghland is the grandmother of Will Merritt.
Happy birthday to our Emily Jane, who turned 8 in August. We love you! Happy 15th birthday Tori! You have brought a zest for life to our family and friends that is unmatched. XOXO Happy birthday Milo!2265
Lexington, KY 40504
To celebrate and support people with Down syndrome and their families and to educate ourselves and others throughout Central and Eastern Kentucky.
