2012 SANDS Fall Newsletter - SANDS | Southern Arizona Network

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Newsletter
Fall 2012
Join SANDS at the annual
National Down Syndrome
Congress Conference (NDSC)
July 2012
Tucson Buddy Walk
October 28, 2012
1:00 PM to 5:00 PM
DeMeester Band Shell, Reid Park
Games, food, entertainment, raffle, silent auction,
Information/resource booths and MUCH MUCH
MORE….
This year there will be all new games, expanded
toddler tent and teen tent.
SANDS is looking for ideas for the teen tent,
volunteers, silent auction and raffle items
First Giving is up and running
Create your profile, register for the event and
start collecting pledges for the event!
Register prior to October 1, 2012 and get a free
t-shirt
SANDS Executive Board
Steve Freeman, President
[email protected]
Frank Rendon, Vice President
[email protected]
Camille Stanbery, Chairperson
[email protected]
Cindy Schaap, Secretary
Camille Stanbery, Frank Rendon, Jodi
Bess and Sharon Callaway, four members
of the SANDS Board attended the
National Down Syndrome Congress
Conference in Washington, D.C., this
July. Thanks again, Pilot Parents, for the
LEAP grants! The amount of information
we gathered was invaluable. We will be
adding all the highlights to our website,
as soon as possible, but we have a sneak
peak for you now.
As your child is growing, and moving
toward an independent life, you may
want to think about setting up a living
trust. The funds can be used for any
expense for your dependent-medication,
glasses, even vacations. The MetLife
Center for Special Needs Planning is there
to help you navigate the legal and
financial complexities involved in planning
for your dependent's future. You may
need a professional to help guide you
through federal and state laws. This may
be a better option for you than a life
insurance policy, as there is no probate
fee, no estate tax, and the money can be
budgeted.
[email protected]
Jodi Bess, Treasurer
[email protected]
SANDS
SANDS Board Members
Chad McKinley
Sharon Callaway
Lars Hammar
1-520-47SANDS (477-2637)
PO Box 17011 Tucson, AZ 85731
[email protected]
www.sandsaz.org
For the most up to date information visit SANDS on facebook!
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All Special Needs Planners have special needs
individuals in their family or close group of
friends; they understand your concerns about
the future. The Planners are there to give
you FREE advice about protecting eligibility
for Social Security Income and Medicaid, how
to provide lifetime care, how to appoint a
trustee or guardian, ways to fund the trust,
and to help you find an attorney. Check them
out at www.metlife.com/specialneeds, or call
1-877-638-3375. If the Special Planner in
your area charges a fee, they will find you a
Planner who doesn't. Remember ARC has a
list of pro bono attorneys!
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www.sandsa
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Pilot Parents of Southern Arizona Announces
Partners in Policymaking
A FREE Leadership Training for young adult self advocates & parents of children with disabilities
Partners in Policymaking is an innovative leadership training program for parents of children with disabilities and for
adults with disabilities. The program is designed to provide information, training, resources and skill building to people with a disability and the parents of children with disabilities so that they can become better advocates
for themselves or their children. Partners in Policymaking provides participants with opportunities to meet and talk
to national and state leaders in the disability advocacy field.
Participants will have an opportunity to meet and unite with others who have similar concerns to create a powerful
voice on important issues. Participants learn how the legislative process works at the local, state and national levels.
The goal of the training is to develop productive partnerships between people who need and use services and those
in a position to make policy and law.
Topics To Be Addressed
History of the Disability Movement, Inclusion & Quality Education, IEP Participation, Community Supports, People
First Language, Person Centered Planning, Assistive Technology, State & Federal Policy, Legislative Process, Planning
for Transitions, Organizing for Change & who should be involved
Application deadline: August 31, 2012
Tentative Dates for the 16th Class: 2012-2013
All sessions will take place on Friday & Saturday in Phoenix
Session 1 November 16-17, 2012, Session 2 January 11-12, 2013, Session 3 February 8-9, 2013, Session 4 March 8-9,
2013, Session 5 April 12-13, 2013, Session 6 May 10-11, 2013, tentative session times: Friday 11am-7pm & Saturday
9am-4pm
Information and an application that can be filled out online and can be found at www.pilotparents.org. Applications
can also be obtained by request. Call Pilot Parents of Southern Arizona, 1-520-324-3150, or Toll Free 1-877-3657220.
Day on the Hill Advocates Successful in Getting Co-Sponsors
NDSC advocates were very successful in achieving the purpose for which they went to Capitol Hill - getting new cosponsors our four different bills. Those four bill were:
1. Achieving a Better Life Experience (ABLE)
A bill that creates a new savings instrument for people with disabilities without the risk of losing important benefits
such as SSI and Medicaid.
2. Keeping Students Safe Act
A bill which prohibits the use of restraint and seclusion, except in the event of a true emergency, in schools.
Two bills which improve coordination of research and create new Centers of Excellence.
3. Research Resource Act (H.R. 2696)
4. Research Centers of Excellence Act (H.R. 2696)
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Arizona Twelfth Annual Transition Conference
Facing the Future: Who’s in Your Network?
Addressing the Transition Needs of Youth and Young Adults with Disabilities
October 15—17, 2012
Talking Stick Resort
Scottsdale, AZ
A limited number of scholarships are available so that youth and young adults with disabilities and/or their family
member/personal assistant needing financial assistance can attend the conference. Note: Sessions for youth, young
adults and family members will be held on Monday, October 15th and 16th. Scholarships can assist with conference
registration fees, lodging costs, or both. The total number of scholarships awarded will be based on available
funding and offered on a first-come, first-serve basis.
Eligibility:
Eligible applicants must be Arizona residents and must also be a:
1. Youth/Young adult between the ages of 14 and 22 years with a documented disability;
2. Family member of a youth/young adult with a disability who is between the ages of 14 and 22 years; or a
3. Personal assistant to a youth/young adult attending the conference.
Special Notes:
• In order to ensure that scholarship funding is fairly distributed, the number of scholarships offered per family
may be limited at the discretion of ADE/ESS.
• Scholarships may be limited based on scholarship awards received by the scholarship applicant in prior years.
• Scholarship recipients are responsible for their own travel expenses to and from the conference, as well as dinner
costs.
• In the event that requests for scholarships exceed available funding, your name will be placed on a waiting list.
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Registration confirmation and hotel approval will be e-mailed to you if your application is approved.
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For more information contact: ADE/Exceptional Student Services, Jeannette Zemeida at (602) 542-3855 or Becky
Raabe at (928) 679-8106.
Registration for scholarships is available at the following link: http://tinyurl.com/Scholarship2012. Please
refer to the program overview for more information about the Arizona Twelfth Annual Transition
Conference: http://www.azed.gov/special-education/files/2012/06/transition-conference-program-overview2012.pdf.
Ruby’s Rainbow is a nonprofit 501(c)(3) organization
supporting the higher educational needs of individuals with Down syndrome
I am contacting you to let you know of our non-profit organization, Ruby’s Rainbow. We are dedicated to the
higher educational needs of adults with Down syndrome. Our mission is to create awareness of the capabilities of
these amazing individuals and also grant scholarships for enrichment, vocational or postsecondary educational
classes. We will have funds available for the fall semester of 2012 and are currently seeking applicants!! This is
our first year so we are trying to get the word out! You can find us at www.rubyrainbow.org. Please feel free to
call me personally with any questions, and please pass the info along to any potential recipients. I can mail you
some cards and pamphlets to have on hand also if you would like!
We would also love to hear of any programs available in your area for adults with Down syndrome.
Thanks and we look forward to hearing from you!
Liz Plachta
President, Ruby’s Rainbow
512-879-7801
[email protected]
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The Santa Cruz Parent Love Connection is excited to announce that our
Annual Buddy walk is just around the corner, Sunday October 28Th, 2012
is the date! The Buddy Walk is a national Walk program created to
promote acceptance and inclusion of people with Down syndrome! Mark
your calendars and prepare to walk and support people with Down
syndrome and their families!
MONTHLY PLAYGROUPS!
The Santa Cruz Parent Love Connection is having now monthly Play
Groups the first Friday of each month at the library in Rio Rico 1060
Yavapai Dr. just around Garret's Super Market. We start at 2:30PM to
close at 3:45. Our playgroup activities are for all ages, siblings are
welcome! Volunteers too! for more information call Maria Scholnick
520-285-6112
Barbara Gudenkauf was our special storyteller last summer and she is
back to read stories for our kids during our monthly play groups events!
Come and enjoy seeing your child learn to read! Bring a book of your
child’s preference if you wish! Bring your child’s favorite toy, too! Volunteers and ideas are welcome !
Entre Amigos a social group for adults (16 yrs and older) with any
disability. We meet on the second and fourth Fridays of each month.
Summer is coming to a close and so is our bowling season, our last session is August 24th from 5:00 pm to 8:00
pm cost is $4.50 per person. Includes pizza, beverage, shoe rental and three hours of free style bowling at Cactus
Bowl 1630 S Alvernon. Next month we will be meeting at the Quaker house 931 N 5th for dinner and good
company cost is $1.00 per person.
We will be voting in a Board of Directors on September 11, 2012 at Denny’s 555 N Freeway from 1:00 pm to 3:00
pm, all are invited. Food is available for purchase.
Looking for individuals to assist cook, serve, cleanup or donate food.
For more information contact Chuck at 790-5806.
Dear Jodi,
I wanted to say thank you for approving Matt's application for his glasses.
This is the second time I have used the Give It Back Program (GIB) for Matt's
needs and you guys have come through in an extremely timely manner.
I am so happy there is a program to help us parents with our kids. Everything adds
up and it is nice to know there is help out there for us if we need it.
So thank you again, and God Bless!!
Sincerely,
Lisa Phillips
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ANNOUNCING: APP UPDATE!
For all of you using our NACD Home Speech Therapist app "Speech Therapy for Apraxia," there is a new
update that includes a 10-minute instructional video. Be sure to update your app to access it. If you
aren't already using the app, check it out!
Speech Therapy for Apraxia
NACD Home Speech Therapist
The therapy tool you've been waiting for!
This app works on syllable production for all of the different speech sounds (phonemes).
With 8 different levels, it can be used at the easiest level to practice one syllable at a time or at the hardest
level to practice being able to sequence different syllables in a string.
It's easy for parents or therapists to use to work with their children!
And stay tuned for more apps to come from NACD....
Visit the iTunes App Store to purchase the app
Dear SANDS,
I have an 18 year old daughter, Paloma, who is moving to Tucson August 1st to go to U of A
who would like to work with a client with DS. (She has been working all summer as a hab
worker with her younger sister (Lily, 10 with DS) and has done a fantastic job.) What she
would love to do is meet a child with DS at an after school program Tues, Thursday, and
Friday to facilitate them playing well and being included in the group. I believe your after
school program is called KIDCO.
She worked this summer at Camp Challenge in Tempe doing this very thing for her sister and
loved it. She wants to do the same for some child in Tucson. She is excellent at helping
facilitate inclusion. She would like to go through a habilitation agency and bill that way. She would also
accept private pay if someone doesn't have services. Other ways she would like to help out would be
taking a child to a lesson such as dance, karate, etc. and being able to help them stay with the class. She
will have a car ( A new Honda accord). Her cell is 480-204-3709. Feel free to contact her if you are would
like her help.
Paloma Romo 480-204-3709
Next Tucson
Buddy Walk Meeting
August 27, 2012 6:00 PM Murphy-Wilmot Library 530 N Wilmot Road
If you want to be involved in the planning, volunteer, find out what’s going on
or have good ideas please plan on attending!
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SANDS Sponsorship “Give It Back! Program” for Individuals and the Community
The Give it back! Program provides a medium by which SANDS can return the funds it raises directly to individuals with
Down syndrome and their families.
This is an extremely important part of our mission both to enrich the lives of those with Down syndrome & to fulfill the
needs of the community in which we live. In addition to helping families financially, a desirable benefit of the program is to
inspire families to explore new and/or alternative options that may not otherwise be considered.
The Give it back! Program provides three different options for individuals with Down syndrome and their families:
1) Individuals with Down syndrome or Family Member Training Sponsorship 2) Reimbursement/Pre-payment option 3)
Community Sponsorships For more details on the program & application form visit our web site
[email protected] or 520-47SANDS
If you are unsure if a product or service can be purchased with GIB funds please feel free to call or e-mail
SANDS and we can answer all your questions (please allow 4 to 6 weeks for GIB processing)
Miss Katie’s Kreations, Katie Henderson a fashion illustrator who happens to have Down syndrome
Katie is an emerging artist who loves fashion and fashion design. Miss Katie’s offers a unique, trendy and stylish
collection of apparel including fashion and sport t-shirts, note cards, original art work and giclee prints. Each item
is designed from original art created by Miss Katie.
On July 2011 Miss Katie held the Grand Opening of her own studio, Café Katie. Katie’s “Passion for Fashion” is
the theme for Café Katie. Guest are encouraged to be prepared to enter the intriguing and whimsical world of
European flair as they enter Café Katie. Come enjoy a touch of Paris , class and elegance . Vibrant splashes of
color mixed with vintage charm inspire Miss KK’s French Collection.
To see or purchase Miss Katie’s Kreations go to www.misskatieskreations.com or visit Miss Katie at https://
www.facebook.com/MissKatiesKreations
Inclusive Practices, Part III
Behavior Matters
A free special education inclusion workshop. The emphasis of this workshop is on looking at our own behaviors first
when we are in a challenging situation with a child or children, and evaluating the role that our own behavior has in
contributing to the unsuccessful interaction, since our own behavior is ultimately the first behavior that has to change
for the interaction to change. There is no charge to attend the workshop and it is open to all participants including parents, family members, educators, social workers and community members. Please provide your own lunch.
Saturday, October 6, 2012 10:00am – 4:00pm
Pima Community College Downtown Campus, Amethyst Room
1255 N. Stone Ave. (at Speedway) Tucson, AZ
Jill McCollum, Developmental Specialist
Please send your RSVP's to [email protected]. Seating is limited.
Mrs. Rita Rago “The Puppet Lady”
Mrs. Rago is 92 years old and has spent the last few years
making puppets for individuals with disabilities.
This past spring, she donated several puppets to SANDS
and we gave them to children who attended the annual
Down Syndrome Connection spring picnic. Mrs. Rago
has again donated a variety of puppets to SANDS. We
will be giving out the puppet’s at the Annual Tucson
Buddy Walk, October 28, 2012
Reid Park, DeMeester Band Shell.
SANDS wants to give a big thank you to Mrs. Rago for
her time and thoughtfulness!
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SANDS is partnering
With Albertson’s to
raise funds for
SANDS.
To be part of this
fund raising project,
just contact me to get a free key ring tag. Then,
every time you shop at Albertsons have your tag
scanned. As a result SANDS, will get a
percentage of the total sale. The more you shop
the more SANDS earn.
Best regards,
Cindy 495-9343
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Leaders of D.A.D.S. National (Dads Appreciating Down Syndrome) provide information
on how fathers can get engaged and why. They will offer assistance to fathers who wish
to shepherd a D.A.D.S. program with their local Down syndrome affiliate. If interested in
starting a local chapter contact Joe Meares at [email protected]
Joe can help by providing brochures, merchandise, logo art and plenty of advice as you plan and execute meetings
and events. You'll likely find as we did, that there are plenty of D.A.D.S. out there looking for information and
inspiration as they work through the daily issues and joys of having a child with Down syndrome.
The AYSO Very Important Players (VIP) Program provides a quality soccer experience for children and adults whose
physical or mental disabilities make it difficult to successfully participate on mainstream teams. VIP teams may
include: Blind or visually impaired, Amputees or with conditions that impair mobility,
mentally or emotionally challenged, Autistic, Down syndrome and Cerebral Palsy
EAST SIDE REGISTRATION- $75.00
Who: Boys and Girls, Ages 8-adult, no age limit
$75 registration includes uniform and trophy
Additional details www.ayso217.org or 751-4604.You can
pre-register at www.eAYSO.org, please select
Region217 if you are a returning player.
Registration fee includes uniform, insurance & trophy.
Call VIP Coordinator Nellie at 762-5903 for more information
Please see website for possible changes & information. Bring shin guards!
First game Saturday September 8th
American Youth South Organization, Region 206
V.I.P, Very Important Player Soccer for adults and children with special needs
Play Soccer! Make Friends! Have Fun! Be Part of a Team!
A soccer program for children and adults with mental and/or physical disabilities
Very Important Player (V.I.P.) - a “special needs only” league that offers an alternative for young people and adults
choosing to enjoy a shorter game, modified rules, field size, and assistance of a helpful “buddy” on the field as
needed. Anyone in Tucson, 5 years or older, regardless of disability is welcome to register.
NORTHWEST SIDE REGISTRATION- $55.00
Saturday, September 10th, 8:30am with practice
Season: Saturday Mornings, September to November
Location: Denny Dunn Park (4400 W. Massingale Rd) / Oldfather Rd
Practices/Games: Saturdays (combined) between 8:30am-10am. Starting
times depends on which division your player is in. (practice & games takes
about 1 to 1.5 hours) Equipment needed: Shin Guards
Uniforms: Shirt, and Shorts provided with registration fee.
If you are not sure VIP is the right program for your player? Just call
and ask!
The VIP League was designed to implement the players’ individual differences
in the league’s operation and play that serve to “help everyone”. This
includes combined practices and games into a single session on a single day
(Saturday mornings) and always at the same location.
Registration Information To register by mail;
Fill out your registration form online at: www.eayso.org Fill out the registration form, print 2 copies and sign them
Please Put V.I.P. at the top of registration forms $55 Registration fee payable to: AYSO Region 206
Put the registration form and payment ($55) in an envelope and mail to:
AYSO Region 206 P.O. Box 91226 Tucson AZ 85752
Scott Hodgkinson V.I.P. Coordinator, A.Y.S.O. Region 206 [email protected] or (520) 237-0918
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PO Box 17011
Tucson, AZ 85731
www.sandsaz.org
SANDS Board of Directors
2012 Meeting Schedule
Address
Second Monday of the month except January
October and December
Meetings are open to the public
come and see how we work!
6:00pm to 8pm
Fronimo’s Greek Café
3242 E Speedway
Specs4us, Erin’s World Frame Line, was designed to fit children
with Down syndrome by providing custom frame to fit their
unique need. Www.specs4us.com (800) 586-1885
To receive this newsletter electronically or be
removed or added to the mailing list call 52047SANDS or [email protected]
Help us save on postage
Due to overwhelming demand,
The Arizona Technology Access Program (AzTAP)
will provide two more trainings for Tucson in August 2012.
Assistive Technology in Southern Arizona
Wednesday, August 29th from 2:00 to 5:00 at the Wheeler Taft Abbott Sr. Library,
7800 N. Schisler Dr.
(limit 30 people)
OR (pick one, they are the same)
Thursday, August 30th from 9:00 to 12:00 at the Murphy-Wilmot Library,
530 N. Wilmot Rd.
(limit 100 people)
IMPORTANT:
PLEASE RSVP ASAP TO [email protected] WITH “TUCSON
TRAINING” IN THE SUBJECT LINE
Reasonable Accommodations Provided if Requested by August 22, 2012
1-800-477-9921
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