UCP News Brief

Disability Update

Children with genetic disorder may be misdiagnosed with autism
As many as 50% of children with a genetic disorder called 22q11.2 deletion syndrome were diagnosed with autism, but U.S. researchers found that none of the 29 children with the deletion disorder met the diagnostic criteria for autism spectrum disorder. The findings, published in the Journal of Autism and Developmental Disorders, show the need for more accurate assessments for autism among children with the genetic disorder. Disability Scoop (9/19), HealthDay News (9/18)
 
Md. commission to study police response to people with disabilities
Maryland Gov. Martin O’Malley created a commission to recommend training standards and best practices for first responders who handle emergencies involving people with disabilities. The Maryland Commission for Effective Community Inclusion of Individuals with Intellectual and Developmental Disabilities was created in response to the death of Ethan Saylor, who had Down syndrome and was handcuffed by deputies on the floor of a Frederick movie theater after he refused to leave after the show. The Frederick News-Post (Md.) (9/17)
 
Disney to adopt new wait policy for people with disabilities
Disneyland and Walt Disney World are eliminating a policy that allows people with disabilities to go to the front of the line at events and rides because the system was being misused. A new policy, which goes into effect in October, will use a kiosk system that gives people a ticket to go on a ride at a specific time without having to wait in line. Only one ride can be requested at a time. Disability Scoop (9/20)
 

Assistive Technology

Poll: 50% OK with service, therapy animals in restaurants, stores
Only half of Washington state residents responding to a Pemco poll said on-leash therapy or service dogs should be allowed inside a store or restaurant. Pemco spokesman Jon Osterberg said it was surprising that one-third of people said service dogs should be allowed in restaurants and shops but not therapy dogs. “It makes us wonder what’s less tolerable about therapy dogs than service dogs,” he said. American City Business Journals/Puget Sound, Wash. (9/19)
Other News

Transitions

Students learn job skills as elementary-school helpers
High-school students with disabilities at Bonner Springs High School in Kansas are working as helpers at an elementary school as part of a special-education transition program. Students in the program learn independent work skills while performing tasks, such as cleaning library books, filling teacher mailboxes and stacking chairs. “And it is also giving us an opportunity to figure out what they like to do and what they don’t like to do, what they’re good at and what they need a lot more support with,” teacher Tierney Thompson said. Bonner Springs-Edwardsville Chieftain (Kan.) (9/18)
 
Hockey team helps students with disabilities find their place
A hockey club in Montgomery County, Va., is helping students with disabilities learn social skills and self-confidence. Operated by volunteers, the club accepts children of all abilities and helps them access the sport at their level. “There’s a sense of satisfaction when you see a kid with disabilities have the same opportunities the other kids have,” a mother, Mildred Bonilla Lucia, said. The Washington Post (tiered subscription model) (9/15)
Other News
LTSS Commission releases final report
Created to replace the Community Living Assistance Services and Supports (CLASS) program, which was repealed in 2012, the Commission on Long-Term Care recently released its Final Report to Congress. The Commission was established to examine the issues surrounding long-term care, specifically service delivery, the workforce requirements and financing — but did not adequately address how it will be paid for. Learn more about the Commission, the recommendations created by the members who voted against the report, and read UCP’s statement.
 
“Breaking Bad” star RJ Mitte on World CP Day
RJ Mitte, star of the hit television series “Breaking Bad” and Global Ambassador for World Cerebral Palsy Day, has filmed a video in support of “Change My World in One Minute” campaign, which encourages people to come up with ideas that could change the world for people with CP. RJ, who has cerebral palsy himself, urges everyone to participate for the chance to see their idea brought to life. Learn more about World CP Day, watch the video and upload your idea today!
 
What is harder than rock, or softer than water? Yet soft water hollows out hard rock. Persevere.”
— Ovid,
Roman poet
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Ralphs Rewards

ralphs rewards card for UCP-OCDid you know that…

…when you shop at Ralphs and use your Rewards card a percentage of your total grocery purchase will go towards UCP-OC? All you need to do is sign-up online, register your card, use your Ralphs Card at check-out, and Ralphs will do the rest. (Instructions below.)

Starting September 1st you can go onto http://www.ralphs.com and re-enroll or sign-up for the 1st time!  You only need to sign-up once and it will be linked until September 2014.

  • Go to www.ralphs.com

  • Click on the “Community” Tab

  • On the left hand side menu click on Community Contribution

  • Under Participantclick Enroll

  • You will now be prompted to sign in

  • If you have not created an account you will need to do so and verify your account via email

  • Once signed in, you will be brought to another page where you can type in “United Cerebral Palsy of Orange Countyand hit search

  • Select United Cerebral Palsy of Orange Countyand hit save!

If you have any questions or difficulties please don’t hesitate to ask for assistance. Please spread the word to families and friends, and let’s start raising money for UCP-OC!

Thank you,

Elizabeth Eckman

949.333.6412

eeckman@ucp-oc.org

Fun Facts

When we get down to it, we all like to hear new fun facts about people and places we are invested in. Especially when they are great conversation starters! This week we wanted to share with you our top 10 fun facts about United Cerebral Palsy of Orange County!

 

Fun UCP-OC Facts:

  1. Did you know UCP-OC started in 1953 serving 7 children with cerebral palsy?

    Early Intervention Specialist Ana Reyes in the Let’s Grow class on Monday mornings.
  2. UCP-OC provides access to resources all in one place! We offer the most comprehensive suite of services for children with disabilities anywhere in the Orange County community.
  3. The 5 most prevalent disabilities we serve, in no specific order, are cerebral palsy, developmental delay, autism, Down syndrome and speech disorders.
  4. Our iPads are used in therapy 40-48 hours a week, equivalent to a full-time therapist’s aid.
  5. We have 14 therapists on staff with a combined 160.5 years of experience. Four of our therapists have advanced practice certifications in addition to their credentials.
  6. More than 300 families receive respite care through UCP-OC each year. Respite provides a much-needed break for caregivers, transportation of special needs clients within the community, or assisting with other special care needs. Last month, families received over 6,600 hours of respite and childcare.
  7. Early Intervention Specialist Ana Reyes has been with UCP-OC for 25 years and has directly impacted over 2,500 families.
  8. UCP-OC’s Pediatric Medical Board consists of 15 of the county’s finest and most innovative doctors.
  9. In 2013, 464 new donors learned about UCP-OC and made an impact on the children we serve.
  10. UCP-OC’s Friday Night Club for Teens and Young Adults with Special Needs founder Natalie Cernius will receive the 2013 National Philanthropy Day Youth Award.

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Child of the Month: September 2013

September 2013: Aya

Aya 1We first met Aya in March 2013 when her family flew “across the pond” from England so that she could receive services from UCP-OC. Aya is almost three years old and has an undeniable smile and the cutest little walker you will ever see!  Her difficulties with balance due to her CP and different medical approach in England brought her family to the states to receive services. Aya’s cousin received services from UCP-OC and insisted that Aya come to meet with our therapists.

During her visit in March, Aya began to walk with the assistance of her walker. She has about the cutest walker we have seen! This past August Aya’s family came to UCP-OC again. The UCP-OC Team has been working on refining the things they focused on the first visit and encouraging her towards walking independently. Aya is a strong clever girl that is determined to work and every day her family wakes up hoping and praying this will be the day she walks!

From the start Aya had difficulty with her balance and depended on her mother  to keep her upright. Throughout her time at UCP-OC, physical therapist Moira strengthened her tone, muscles and worked on other physical weaknesses characteristic of her cerebral palsy.

Her occupational therapist, Kristy, has been working diligently as well on her fine motor skills, as well as  assisting Aya with her ability to be more confident in her environment. Kristy works on these elements to allow her to enjoy all the fun things we have to offer (playgrounds, slides, Disney) by working on her body awareness, sensory regulation and emotional regulation. She is now more confident with using her body to help her explore her environment and she is able to enjoy playing with her sister in all environments. Aya’s treatment also focused on her using her right hand more and improving her fine motor skills.

Aya’s mother says, “UCP-OC has helped Aya clearly become a more confident child, overcoming her fears, working continuously and consistently targeting the weaknesses she ha. she is looking great and her character is evolving through the amazing team she works with!”

If you would like to make a gift to support the services that are helping Aya and her family, please click here or contact Elizabeth Eckman at eeckman@ucp-oc.org  for more information.

Aya's Walker
Aya’s Walker
Aya with her sister and therapists Lisa and Kristy.
Aya with her sister and therapists Lisa and Kristy.