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Adult Matters E-Newsletter February 2019
Medical Guidelines for
Adults with Down Syndrome
The new Medical Care Guidelines for Adults with Down Syndrome will provide medical professionals,
families and self-advocates with updated information about adults with Down syndrome and a checklist of
recommended screenings and tests that cater to the unique medical profile of this population.
In the U.S. the life expectancy of an individual with Down syndrome has more than doubled in the
last three decades, from 25 years in 1983 to 60 years today.
The last medical care guidelines for adults with Down syndrome were published in 2001 – over 17
years ago.
The new guidelines will cover medical care across multiple disciplines, including cardiology,
immunology, behavioral and mental health, and obesity/metabolism.
*This article is
from the Global
Down
Syndrome
Foundation.
Click here to
view it online.
Golfer with Down Syndrome Signs
College Letter of Intent By: Richard Obert
Amy Bockerstette, who has inspired the golf community with her
ability to reach the state high school tournament the last two years,
never letting Down syndrome limit her dreams, will continue what
she loves.
On Friday morning, in a ceremony at the Phoenix Sandra Day
O'Connor gym lobby, Bockerstette signed a golf letter of intent with
Paradise Valley Community College.
She shared the moment with her parents, her golf coaches,
teachers, administrators and teammates.
"I was fortunate to get a scholarship to Paradise Valley Community College and meet some new friends,"
Bockerstette said. "It was great to continue to play golf. The scholarship came out of the blue last week, said
Jenny Bockerstette, Amy's mom.
Paul Roads, who has been Bockerstette's main teacher in high school, recommended that she apply for
college at the community college.
"We did that and she was admitted," Jenny said.
Joe Bockerstette, Amy's dad, took it a step further. He emailed the PVCC golf coach, asking if the was a way
Amy could be involved with the team.
"We put together a resume for her and the coach saw a video," Jenny said. "It was way more than we could
have ever asked for or imagined."
Jenny said the family was admittedly "floored" by the full-ride scholarship offer.
"Mr. Roads said, 'You guys got to keep this going,' " Joe said. "Our thought was, 'She's done (with golf).' He
said, 'You've got to talk to a community college. You've got to talk about playing golf still.' "
"We contacted the coach and said, 'Is there a role she could play?' And he said, 'I think a scholarship would
be good.' We said, 'Really?' He said, 'She can play. Let's get her on the team. We'll make this work. This is
community college. This is what we do.' ''
Click here to read the full article.
Employment through OOD
Do you have a disability and want a job?
Visit our website and take the self-assessment to begin:
https://oodworks.com/
Each year, we have a “Let’s Get Fancy” party for adults who are
attending our Winter Dance! Thank you to our stylists for making
this possible! Everyone looked fabulous!
O.W.N. Day
February 23, 2019
Xavier University
OWN: Optimizing What’s Next is a one day event that is
based from our popular Independent Living Retreat. OWN
focuses on community service, learning new skills, making
friendships and gaining or increasing your OWN level of
independence.
Saturday Morning - the group attends classes to learn
new skills. Classes may include money management,
healthy eating, character strengths, communication,
cooking and relationships.
Saturday Mid-day - the group participates in various
community service projects. This teaches the
importance of giving back and builds confidence.
Saturday Afternoon - the group gets to socialize off-
campus. Social events may include a Reds game,
pottery, bowling and more!
Registration Information:
We accept 25 OWN attendees per year.
Attendees must reside within our 12 counties, have Down syndrome and be 18 or older.
7 spots will be reserved for NEW* attendees. NEW Attendees are specified as anyone who has never
attended or has not attended the event for the last three years.
Please note before registering:
Full attendance is necessary to ensure quality learning. If you are unable to commit to the entire event
please leave the spot available for others. We have a wait list for the majority of our programs.
Attendees must be able to self-administer their medications during the duration of the event. Staff and
volunteers will ONLY be able to provide verbal prompts.
Experienced, background checked and trained staff/volunteers will provide supervision and facilitate a
positive learning environment
Register
Adult Kitchen Skills February 21-March 21 (Thursdays) | 6:30-8pm
Bauer Marketing, 5508 Fair Lane Cincinnati, OH 45227
Instructed by Chef Mike Hensen
Participants will gain hands-on experience in the kitchen! Chef Mike and his assistant will teach adults how to
use tools and appliances to prepare meals. Chef Mike and volunteers will oversee participants as they create
their very own dishes! Throughout the 5-week session, adults will also learn about kitchen safety and tips to
eat healthy! The final week the skills will be applied and the group will host a family style meal.
**This class is FULL. Email Emma Ganiban to be places on a Waiting List: [email protected].
321 Party for WDSD Saturday, March 23 | 4-6pm
DSAGC Hatton Foundation Community Room
World Down Syndrome Day is celebrated on March 21 (3/21) to signify the 3rd copy of the 21st chromosome
present in people with Down syndrome. Celebrate World Down Syndrome Day with your friends! We will have
food, drinks, dancing and fun! Social clubs are encouraged to attend with their peer partners.
Register
21 Series
Racial Disparities in Health Outcomes among
African- Americans with Down Syndrome
Thursday, February 21 | 6:30-8pm
DSAGC Hatton Foundation Community Room
Presented by Dr. Anna Esbensen and Dr. Lauren Wang
African-Americans with Down syndrome are reported to experience significantly shorter lifespans than their
Caucasian peers. This presentation provides the audience with updated life expectancies based on
Tennessee administrative databases, and an understanding of how racial disparities in health and
hospitalizations contribute to these disparate life expectancies. The doctors will discuss ways to promote
better health outcomes.
Register
Española Workshop
Celebrando y Educando a las
Madres- Celebrating and Educating
Moms Workshop
Fecha: Domingo 7 de Abril, 2019 de 1 pm -3:30 pm
Lugar: Oficina de DSAGC
Presentadora: Marbella Cáceres Directora Estatal
Multicultural de la Coalición para la Educación de niños con
discapacidad en Ohio, OCECD por sus iniciales en inglés.
Marbella actualmente se desempeña en la Junta Estatal
Asesora para Niños Excepcionales (State Advisory Panel for
Exceptional Children) y como voluntaria para la Alianza
Nacional contra las Enfermedades Mentales en el condado de
Franklin (NAMI).
Para ayuda en Español, llame al (513) 490-2834 o envíe un correo a email.
DSAGC Family Resources
Support at Every Age
Community Participation Fund
Community Groups
Our Adult Matters Coordinator, Christy Gregg, welcomes any questions or concerns you may have about
transitioning into adulthood. She can be reached at [email protected]. Our Adult Matters Engagement
Coordinator, Emma Daniels, coordinates our social opportunities for adults. She can be reached at
We have a limited amount of scholarships available for individuals with Down syndrome to participate in
community activities (such as camps, soccer, swim lessons) and therapies. There is also funding available
for parents to attend educational meetings or conferences. We pay half of the request (up tp $200 per
year). You must live within our 12 county area to be eligible. Please contact Lisa Steele
at [email protected] for more information.
The vision of the ‘Community Groups’ is to provide support, connections, information, and be a resource to
families while creating a warm, welcoming, empathetic environment. A Community Group is designed to
create opportunities for families that have children with Down syndrome to network and share common
interests, concerns, challenges, and information.
Each Community Group is considered an extension of the DSAGC, but autonomy and decision making
authority is given to the groups so they can effectively meet their unique purpose and goals for serving
families and individuals in their community. Click here to see a full list of Community Groups.
Year-Round Adult Opportunities
Adults can also participate in our year-round programs, Social Clubs and Advocates in Action. You can find
more information at http://www.dsagc.com/programs1/social-opportunities.
Research Studies
You are Invited to Participate in a Research Study The purpose of this research study is to learn how parents of children with disabilities seek out and make
sense of information as they address the medical, educational and social concerns of their children.
To participate in this research, you must:
Be 18 years old or older
Be the parent and legal guardian of one or more children with at least one physical and/or intellectual
disability
Participation in this study involves:
Participating in one 90 minute focus group discussion with other parents/guardians
Coming to the NKU campus or the Down Syndrome Association of Greater Cincinnati offices for one of
the focus group sessions
Dinner, lunch or breakfast for all participants
Entry into a drawing for a $25 Target gift card at the focus group session
To find out more about this study, please contact Dr. Zachary Hart at:
Phone: 859-572-5573
Email: [email protected]
You also may sign up directly for a focus group discussion by going to:
https://nku.co1.qualtrics.com/jfe/form/SV_5nAtkYiePsD7xrL
Study Title: A Research Study of Information Seeking and Sensemaking by Parents of Children with
Disabilities
IRB #: 410
Researcher Name: Dr. Zachary Hart
$5.7 million NIH Research Funding to
the Thomas Center and Colleagues The Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center is proud to
announce receipt of two federal research grants supporting children with Down syndrome. Both grants were
awarded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD).
Anna Esbensen, PhD, Research Director of the Thomas Center, received a 5-year, $2.6 million grant to
continue her work on evaluating cognitive outcome measures for children 6-17 years with Down syndrome. If
you are interested in more information, please contact us as 513-803-3641 or email Emily Hoffman at
[email protected] (see information flyer below). Dr Esbensen is also collaborating with Angela
Thurman, PhD, at the University of California-Davis MIND Institute, on a 5-year, $3.1 million grant to evaluate
language outcomes in children 2-8 years with Down syndrome. More information will be coming soon on how
to participate in this project.
Dr. Susan Wiley, co-director of the Thomas Center for Down Syndrome, also partnered with Drs Raouf Amin
and Stacey Ishman from the Divisions of Pediatric Pulmonary Medicine/Sleep Medicine and Pediatric
Otolaryngology – Head and Neck Surgery at Cincinnati Children’s Hospital. They received funding to expand
their current study on the neurocognitive and school performance effects of removal of adenoids and tonsils
for snoring to focus on children with Down syndrome. This study will enroll children with Down syndrome
undergoing tonsil and adenoid removal for snoring or sleep apnea. This study includes 7 centers across the
U.S. (Philadelphia, Cleveland, Dallas, Boston, Ann Arbor, Norfolk, and Cincinnati). If you are interested in
more information, please contact us at 513-636-0607 or email Belinda Carter at [email protected].
These projects could not have been funded without the strong collaboration between families, the DSAGC
and the Thomas Center. We are honored to work in a city with so many dedicated families, a strong Down
syndrome association, and a wonderful partnership in advancing research to support positive outcomes for
individuals with Down syndrome.
Webinars
1.5 Professional Training Contact Hours - Certificate of Participation Provided.
30% Group Discount Available when Registering 5 or More Participants
Contact Seneca for Group Discount Information
CLICK HERE TO REGISTER NOW
Preventing Abuse, Neglect & Exploitation Webinar (75 minutes) - $15
Tuesday, February 19th 3:00 p.m. (Eastern Standard Time)
Wednesday, February 27th 1:00 p.m. (Eastern Standard Time)
Thursday, March 7th 11:30 a.m. (Eastern Standard Time)
Friday, March 15th 10:00 a.m. (Eastern Standard Time)
Sexuality & Developmental Disabilities Webinar (90 minutes) $19
Friday, February 8th 11:00 a.m. (Eastern Standard Time)
Tuesday, February 19th 1:00 p.m. (Eastern Standard Time)
Wednesday, February 27th 3:00 p.m. (Eastern Standard Time)
Thursday, March 7th 2:30 p.m. (Eastern Standard Time)
Maintaining Professional Boundaries (90 minutes) $19
Monday, January 28th 11:30 a.m. (Eastern Standard Time)
Tuesday, February 26th 1:00 p.m. (Eastern Standard Time)
Wednesday, March 6th 2:30 p.m. (Eastern Standard Time)
Thursday, March 14th 10 a.m. (Eastern Standard Time)
Practical Approaches to Behavior Management Webinar (90 minutes) $19
Tuesday, February 12th 1:00 p.m. (Eastern Standard Time)
Friday, March 1st 10:00 a.m. (Eastern Standard Time)
Wednesday, March 20th 2:30 pm. (Eastern Standard Time)
To register for any of our webinars please visit: http://buytickets.at/senecainstitute
Community Opportunities
The DSAGC does not endorse, recommend or support any particular regime,
therapy, activity, camp or treatment. We welcome articles and information from
parents, professionals and other interested parties.
2019 Sessions
January 12 January 26 February 2
February 16 March 2 March 16 March 30 April 13 April 27 May 4
May 18 June 1
June 15
4 - 5:30 PM The Club at
Harper’s Point
Please note, this list was created by social workers at Cincinnati Children’s
Hospital in DDBP. The DSAGC has not contacted the camps directly.
Summer Opportunities
Cincinnati TOP Soccer (Mason, Western Hills, and Amelia, OH)
Ages: 4- Adult
https://www.cincytopsoccer.com/
Cincinnati Therapeutic Riding and Horsemanship (Milford, OH)
Equine assisted therapies
Ages: 2– Adult
https://ctrhequinetherapy.org/
Melodic Connections (Cincinnati and Lebanon, OH)
Ages: 6 months-Adult
Music therapy, some groups
http://melodicconnections.org/
Cincinnati Recreation Commission (various locations in Cincinnati)
Ages: 6-12 years
Opportunities include fitness, art, and outdoor recreation.
www.cincyrec.org
Scene 75 (Milford, OH)
Ages: No age restriction
First Thursday of each month offers a Special Needs Program that includes interactive gaming, mini golf and
other activities to help build motor and social skills, recreation time, hand/eye coordination.
www.scene75.com/about/special-needs-program/
YMCA Camp Campbell Gard (Hamilton, OH)
Ages: 7-22
Both day and overnight camps are available. Neighboring areas are welcome.
www.ccgymca.org
Click here for the full list of opportunities:
Summer Day and Overnight Therapy Programs + Recreation Information
February Calendar Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1
Let's Get
Fancy!
Winter
Dance (ages
15 & up)
Movement
Class (ages 2 -
2
Grandparents
Group -
Luncheon
Buddy Up
Tennis (ages 5 &
up)
3 4 5 6
Teen Kitchen
Skills (ages
13 - 17)
7
8
Movement
Class (ages 2 -
5)
9
10
DSAGC
Community
Group
Leaders
Workshop
11 12
Westside -
Moms' Night
Out
Butler/
Warren -
Story Time
and Craft
13
Teen Kitchen
Skills (ages
13 - 17)
14 15
Movement
Class (ages 2 -
5)
16
Buddy Up
Tennis (ages 5 &
up)
AAFN - Dinner
Meeting
17
Teen Club -
Yoga Sunday
18 19 20
Teen Kitchen
Skills (ages
13 - 17)
21
21 Series -
Racial
Disparities in
Health
Outcomes
among People
with Down
Syndrome
ADULT Kitchen
Skills (ages 18
& up)
22
Movement
Class (ages 2 -
5)
23
O.W.N. Day
(ages 18 & up)
Physical Therapy
(ages 0 - 1)
BY 2017 -
Sweetheart
Brunch
24 25 26
Eastside -
Moms Night
Out
27
Teen Club -
Yoga
Wednesday
28
ADULT
Kitchen Skills
(ages 18 & up)
March Calendar
Office Closed
Sunday Monday Tuesday Wednesday Thursday Friday Saturday
1 2
Physical
Therapy (ages
0 - 1)
Buddy Up
Tennis (ages 5
& up)
3 4 5 6 7
ADULT
Kitchen
Skills (ages
18 & up)
8 9
Physical
Therapy (ages
0 - 1)
3rd Party
Fundraiser -
Euchre Party!
10
BY 2015 - Family
Event
11 12 13 14
ADULT
Kitchen
Skills (ages
18 & up)
15 16
Physical
Therapy (ages
0 - 1)
Buddy Up
Tennis (ages 5
& up)
17
Butler/Warren
- World DS Day
Celebration
18
Sky Zone
(ages 6 - 22)
19
Buddy Walk
Fundraiser -
Allie's Army
and Liam's
Legion
20 21
ADULT
Kitchen
Skills (ages
18 & up)
22 23
Physical
Therapy (ages
0 - 1)
321 Party
(ages 18 & up)
24
World Down
Syndrome Day
5K
AAFN - 321
Pizza Party
25 26 27 28 29 30
Physical
Therapy (ages
0 - 1)
Buddy Up
Tennis (ages 5
& up)