November 2015 - Down Syndrome Partnership of North Texas

November 2015
DSPNT’s purpose is to support people with Down syndrome, their families, and
communities, in reaching their full potential.
Virtual North Texas Buddy Walk
Texas weather is anything but predictable; one day the sun is
shining bright, the next we’ll have torrential rainfall. We’re Texans, we
adapt, which is exactly what DSPNT demonstrated on October 24 th! We
held our Virtual North Texas Buddy Walk and spread awareness far and
wide via social media.
Using #VirtualNTXBuddyWalk, DSPNT members shared pictures
of family & friends celebrating and dancing and rain! We have a special
story we would like to share.
Ashlee Beck, who as many of you know is a talented
photographer, contacted DSPNT Program Specialist, Liz Hammond and
informed her that due to the rain their driveway had become
impassable and she would not be able to attend Buddy Walk regardless
of Saturday’s weather.
She simply adapted, as we all did, and held a photoshoot with
her family in the rain and mud! We will be sharing pictures throughout
this month’s newsletter. If you have any pictures you would like to
share, please send them to [email protected] or share them on our
Facebook page.
Contents
Virtual North Texas Buddy
Walk
Note From The Buddy
Walk Committee
What My Daughter Gave
Me On Her 5th Birthday
Texas ABLE Act
Home & Community
Based Stakeholder Input
Thriving With Down
Syndrome Recap
Calendar
Resources
Dearest DSPNT Community,
Please know that the Buddy Walk committee put countless hours towards preparations for the North
Texas Buddy Walk, and that we had been ready for an amazing event that was going to spread
awareness and be a wonderful celebration. Captain America and Cinderella were going to be in
attendance. We had a young lady with Down syndrome that was excited to sing the National
Anthem. The Self-Advocates that serve on the DSPNT Board of Directors were prepared to help with
the event announcements and introductions. There was going to be a Baby Zone so that new parents
could congregate together. A balloon artists and face painters were going to delight the children. The
Teen+ Zone was going to offer a game truck and activities. Almost 30 exhibitors were looking forward
to participating. Numerous volunteers had been arranged and were looking forward to helping. I was
most excited about the many friends and neighbors and co-workers that may only know one person
with Down syndrome who would have the opportunity to see everyone enjoying the celebration, and as
they walked and saw the posters of our beautiful DSPNT members they would have learned numerous
facts about Down syndrome. Unfortunately, Mother Nature had alternative plans and we were crushed
that the walk was not able to happen as planned. I am so thankful for everyone that participated in the
Virtual North Texas Buddy Walk. Seeing the outpouring of support and positive attitudes to press on
and still smile and spread awareness was truly uplifting. Thank you so much for your support and
understanding.
2015 North Texas Buddy Walk Committee
What My Daughter Gave Me On Her 5th Birthday
Kate is turning five next week.
Kate’s 5th birthday seemed to be waving at me in the distance challenging me to do more — to be more. More therapy,
more educational activities, more early intervention. What was enough?
Luckily, it quickly occurred to me: she is enough. She is enough with her bright blue eyes and smile as wide as the sea. She
is enough. When she was born, I read that the most important brain growth happens in the first five years. This news gave
me a strong sense of urgency enough with her love for her siblings and her gentle strokes of my hair.
She is enough with her hilarious personality, giant cackle and strong opinions.
She is enough — as she is — and my job is to help her be the best her.
I am so grateful to live in an age where there are boundless resources for a family with a child with Down syndrome. The
wonderful therapists and experts we have met on this half-decade journey have enriched our lives and provided
encouragement.
They have taught us techniques and focused our efforts.
They have given us tools for developing the brain and the body, all of which I have incredible gratitude for.
But do you know what I’ve realized about these first five years?
What grows exponentially faster than the brain is the heart.
But you see, the heart doesn’t measure growth by a checklist — how soon first steps are wobbled or when first sentences
are said. No, the heart measures growth in a more subtle way, a stretching of character, a stirring of the soul, a change in
life perspective.
And as I’ve celebrated Kate’s accomplishments, scooping her up with joyful tears when she clearly asked for a banana,
giving a standing ovation when she toddled her first steps — what I’ve celebrated most is the growth of her heart.
Kate doesn’t sit at the breakfast table until she’s given everyone a good morning hug. Her favorite music sends her into a
spin, arms spread wide like a prima ballerina. She tenderly tucks her 1-year-old sister in bed, kissing her forehead and
patting her back. She delights in the happiness of people around her and giggles with empathy when someone else gets
tickled. She may not be able to do everything all 5-year-olds can do, but oh man, when it comes to the good stuff, she’s
ahead of the curve.
And I, like the Grinch, whose heart grew three sizes in just one day, have found myself to have had quite a growth-spurt
since Kate was born as well.
It’s the nature of motherhood, of course, to be stretched (physically, emotionally, spiritually), but Kate’s big heart has changed
mine.
She has given me the gift of perspective.
For in her five years, she has accomplished more than many much older — simply in how well she loves and how
effortlessly she inspires others to do the same.
Read more at: www.sippinglemonade.com
Texas ABLE Act
On December 19, 2014 individuals with disabilities saw the most powerful piece of legislation since the
1960’s become law. The Achieving A Better Life Experience (ABLE) allows individuals with disabilities to have taxfree savings accounts that can hold up to $100,000.
May 30, 2014, the state of Texas enacted its version of the ABLE Act. For the first time individuals with
disabilities can save money in their own name without concern of losing benefits such as Medicaid for exceeding
the $2,000 personal resources limit. Anyone with a disability diagnosed before the age of 26 qualifies for the
account.
Deposits may be made as often as an individual, family member or friend prefers as long as you do not
exceed the annual limit of $14,000. Accounts may be set up through the Texas Comptroller of Public Accounts
once the program is available to the public.
Are you planning on opening a Texas ABLE Account? If you have any questions please call our office at
(817) 390-2970.
Home & Community-Based Stakeholder Input
The Health & Human Services Commission is requesting stakeholders’ input concerning new rules that
have the potential to raise the bar for community services for people with intellectual and developmental
disabilities in Texas by mandating certain rules that differentiate community-based vs. institutional-like settings.
This means people getting services should be able to:
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Have opportunities to seek employment and work in competitive and integrated settings.
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Engage in community life.
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Control personal resources.
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Get services in the community
The Texas Department of Aging and Disability Services (DADS) has begun the process of implementing state
transition plans. The agency must submit a statewide transition plan to CMS for each 1915 (c) Medicaid waiver.
The transition plans WILL apply to the following DADS programs:
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Community Living Assistance and Support Services
Deaf-Blind with Multiple Disabilities
Home and Community-based Services
Medically Dependent Children Program
Texas Home Living
The new federal rules will affect the Texas Department of State Health Services Youth Empowerment Services
program, the 1915(i) and 1915(k) state plan options.
For information about Home and Community Based Services (HCBS) Rules, visit:
http://www.dads.state.tx.us/providers/HCBS/index.cfm
A meeting will be held:
November 6, 2015 from 6:30 PM – 8:30 PM
Resource Connection
2300 Circle Dr. │ Ft Worth, Texas 76119
Thriving With Down Syndrome 2015 Recap
On October 3, 2015 DSPNT held our first annual Thriving With Down Syndrome (TWDS) Conference for families, self-advocates,
educators and service providers. TWDS featured something for every age group, as well as a track for our Spanish speaking families.
Amy Allison, Executive Director of the Down Syndrome Guild of Greater Kansas City was our featured speaker who led sessions on Down
Syndrome 101 & Managing Behaviors. This was our highest attended educational event to date.
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Tiffany Love-Engeman & Leslie Garcia- Reading Rediness
Darby Gilliam & Valisa Tungate- Helping Your Church Develop a Special Needs Ministry
Ashley Southerland- Understanding HCS & Other Medicaid Waiver Programs
Angela Harvey- Guardianship, Trusts, & Wills—Making the Right Decisions For Your Family
Debbie Wilkes- The Role of Job Coaching & Mapping the Future Through Person Centered Planning & Transition Planning
Kristin Adams- Early Intervention: Getting Ready To Go To School
Liliana Dominguez- Formando parte de la Fundacion de Padres con ninos con Sindrome de Down del Norte de texas
Ana Castellanos- Informacion importante respecto a Medicaid para ninos y adultos con Sindrome de Down
Tiffany Love-Engemann, Valeria & Veronica Lopez- Preparandose para aprender a Leer, ayudando a tu hijo a conectar con sus
actividades diarias
Coral Bibloni- Promoviendo y apoyando el aprendizaje en casa
Jeff Turner- Self Defense & Personal Safety
Patricia Martinez & Mike Foster- Drumming
Jacque Linville- Cooking For Fun & Good Health
Jonelle Christian & Bethany Huff- Skin Care & Appropriate Make Up Application For Ladies
Madelyn Allivio- Getting Crafty
DSPNT is excited to announce after a highly successful Buddy Walk fundraising season, thanks to members like you, we’ve
already begun planning Thriving With Down Syndrome 2016. In fact, we are excited to announce that we have already scheduled Dr.
Brian Chicoine. You may already be familiar with some of his work, including the books Mental Wellness in Adults in With Down
Syndrome or The Guide to Good Health for Teens and Adults With Down Syndrome. If you haven’t had a chance to read any of his work
yet, call our office at 817-390-2970 to find out what’s available in our lending library.
We want to hear from you! What topics and issues are important to you and your family? Please send us your thoughts and
ideas on offerings you would like to see in the future to [email protected] today.
~ November 2015 ~
◄ October
Sun
1
Mon
2
Tue
3
Wed
4
December ►
Thu
5
Fri
6
Sat
7 Club 321 Masquerade
Ball
Green Oaks School
7:00 pm
8
9
10 D.A.D.S. Meeting
11
12
13
14
17 DSPNT Gymboree 18
19
20
21
26
27
28
Cooper’s BBQ
6:30 pm
15 DSPNT Board
16
Retreat
Playdate
Gymboree Southlake
6:00 p.m.
Cost is $5.00 per child
22
23
24
25
29
30
Notes: Save the date for the annual DSPNT Holiday Party on
December 13th!
Resources
D.A.D.S. is a community of fathers of children who have Down syndrome who come together to share insights and
experiences, and who want to help create a better environment for their children with Down syndrome as well as for
their typically developing children. The group meets monthly on Tuesdays at Cooper’s BBQ. The next D.A.D.S. meeting
is November 10th. For more information or to RSVP, contact Patrick Bierle at [email protected]
Mom’s Night Out is every third Friday of the month! Mom’s Night Out will be announcing our 2016 schedule next
month!
La Asociacion Sindrome de Down del Norte de Texas ofrece recursos y apoyo a personas con
syndrome de down y sus familias. Para mas informacion: Favor de contactar a Liliana D. Rueda y [email protected]
Club321 is our Adult Social Club! Send an email to [email protected] for more information!
C
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