UCP SmartBrief & My Child Without Limits

UCP SmartBrief


Disability Update:
Judge says NYC emergency plans inadequate for people with disabilities
U.S. District Judge Jesse Furman ruled that New York City’s emergency planning is inadequate to accommodate people with disabilities and the city is in violation of local and federal laws, including the Americans with Disabilities Act. Furman said the city’s plans do not ensure evacuation of people with disabilities, do not provide sufficiently accessible shelters, and do not do enough to inform people about accessible emergency services. The class-action lawsuit was brought by local disability-advocacy groups after Tropical Storm Irene in 2011. The Wall Street Journal (tiered subscription model)

Children with autism are more prone to gastrointestinal problems
In a study involving almost 1,000 2- to 5-year-olds in California, researchers found that gastrointestinal issues, such as diarrhea, food sensitivity and constipation, were six to eight times more prevalent among children with autism than those without the condition. “GI problems may create behavior problems, and those behavior problems may create or exacerbate GI problems,” lead author Virginia Chaidez wrote in the Journal of Autism and Developmental Disorders. HealthDay News

Assistive Technology
Children with autism are more prone to gastrointestinal problems
In a study involving almost 1,000 2- to 5-year-olds in California, researchers found that gastrointestinal issues, such as diarrhea, food sensitivity and constipation, were six to eight times more prevalent among children with autism than those without the condition. “GI problems may create behavior problems, and those behavior problems may create or exacerbate GI problems,” lead author Virginia Chaidez wrote in the Journal of Autism and Developmental Disorders. HealthDay News

DOT rules to make airport kiosks, airline websites more accessible
New U.S. Department of Transportation rules will require airline websites and airport kiosks to be accessible to people with disabilities. Airlines will be required to make their website pages with key travel information and services accessible to people with disabilities within two years of the rule, and at least 25% of airport kiosks used for such services as printing boarding passes will be required to be accessible within 10 years. Forbes

Transitions
Minn. district switches to inclusion model for students with disabilities
St. Paul Public Schools in Minnesota has closed most of its learning resource centers and placed students with behavioral and emotional disabilities at their home schools to have more interaction with their peers. The change has given most students a chance to be in a regular education classroom. Some student advocates and teachers raised concerns, such as not having enough aides and special-education teachers to co-teach in every classroom with students with disabilities. Pioneer Press (St. Paul, Minn.)

Adding sensory elements to stories can enhance learning
Incorporating sensory experiences, such as feeling a drop of water or smelling a favorite scent, into stories can help enrich learning for all students, says special-educational needs and disabilities consultant Joanna Grace. In this blog post, she shares specific ways sensory stories can be used with a range of student populations, including students with sensory-processing disorders and other special needs. The Guardian (London)/Teacher Network 

UCP News
2013 Design- athon a huge success!

Held in partnership with U.K.-based Enabled by Design and Futuregov, the Design-athon is an international innovation event with a focus on disabilities. More than 100 hackers, designers and inventors came together at the Design-athon to hear from experts, discuss the issues surrounding the need for more accessible, attractive and easier-to-use products for people with disabilities, and to build functional, scalable prototypes. Learn more about the Design-athon and how you can get involved!

World Cerebral Palsy Challenge final results announced
The final fundraising results from the second annual World Cerebral Palsy (CP) Challenge, an international awareness and fundraising campaign for people living with cerebral palsy and other disabilities, were recently announced — and they are amazing! More than $180,000 was raised in the U.S., and $1.6 million was raised worldwide. More than 1,900 individuals from five different countries participated in the World CP Challenge, making it a huge success. Thank you to everyone involved, and we hope to see you again next year! Learn more about the World CP Challenge.

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My Child Without Limits

Giving Tuesday

This year, on Tuesday, December 3, 2013, UCP and My Child Without Limits are part of a call to action celebrating a day dedicated to giving. Charities, families, businesses, community centers, students, retailers giving_tuesdayand more will all come together for #GivingTuesday – a movement to celebrate giving and encourage more, better and smarter giving during the Holiday Season that we are proud to be part of.

Since the beginning UCP-OC has relied on support from its community members to continue serving the children and families in Orange County.  #GivingTuesday proves that the holidays can be about both giving and giving back. It celebrates how Americans can do more with their wallets than just shop – and that we Americans can give as good as we get.

Mark your calendar for #GivingTuesday or click here to donate today.

U.S. Preterm Birth Rate Falls But More Can Still Be Done
According to a report released by the March of Dimes, in 2012 the nation’s preterm birth rate was 11.5%, a 15-year low. While it is better than in previous years the U.S. received a grade of C and was ranked 131 out of 184 countries worldwide. There is still very far to go in decreasing the U.S.’s preterm birth rate. Beyond statistics about the numbers of births, the report focuses on the reasons behind the rate and strategies for prevent- including reducing smoking and increasing health insurance coverage among pregnant women.

Click here for full results of the March of Dimes Global Action Report.

Click here for more information about premature births including common associated health problems and treatments from MyChildWithoutLimits.org.

Trying To Teach Empathy Through A New Video Game
quandaryMIT’s Education Arcade and the Learning Games Network created a new free game called Quandary with the idea of engaging kids to start thinking. Quandary approaches the broad topic of ethics by helping students understand how to take a different perspective and learn how to empathize.

As a player you are the captain on an Earth colony on a distant planet charged with the survival of your crew and residents. In order to understand the situation you must interview different characters and organize the information you get in to facts, solutions, or opinions, and then act. The game allows players to experience a diverse set of character viewpoints. Gamer creators believe “The game offers a unique decision-making mechanic, one where the choices and outcomes available to players are not a binary ‘good or bad’, and where there are no easy, right answers.”

Creators are careful to say the game doesn’t teach ethics, per se. Instead they “…see games as an organized space for playful exploration and through the process people encounter and form new ideas and concepts, they begin to construct knowledge.”

Quandary has a new iPhone and Android app that offers the same experience as the web-based game and are available for free. Check out the website for more information and to download the game.

Other interesting news:

Life’s a Journey With CP and Me

Hi Everyone!

Katy FettersKaty here, a local college student who is always writing, sharing, and learning about cerebral palsy since I also have CP!

I just recently participated in the World CP Challenge, a global, month-long fundraiser that works to raise awareness and educate participants about CP. In addition, participants dedicate this entire month to their own health and fitness: in teams of four, we climb seven virtual mountains all over world with a pedometer step count! As the leader of Team TeenCP, I am happy to say we completed our second year doing the challenge. This year was more successful for us with steps, but fundraising was a bit difficult due to the competitive nature of the challenge in my community! (What a good problem to have, though.)

While I can’t do as much running and walking as I used to, what is great about this fundraiser is that you can still gain “steps” for your team no matter the activity! Biking became my main mode of exercise for the challenge and I always felt so great after logging in my steps for my team to see our progress! Another plus, is that the CP CP_Challenge_logoChallenge really allowed me to feel more in-tune with my physical health and I have been able to keep up with consistent cardio and strength training because I feel so great after a hard work out! I hope others who did the challenge feel the same way. What I also loved about this year was that the challenge ended on World CP Day (Oct. 2), so as a great send off, I was able to speak toward some young adults that I know who have CP and urge them to share something about their own experience with having a physical disability. What an empowering movement I get to be a part of! Team TeenCP will look forward to a stronger, better fundraiser for the fall of 2014.

My parents, Paul and Carolyn Fetters, owners of The Training Spot in Huntington Beach have supported UCP-OC for quite some time now, and this is the second World CP Challenge that they, their personal trainers and committed clients have also participated in the fundraiser. A gym or fitness center is a great environment to host something like the World CP Challenge because it encourages members and clients to get active for such a great cause (and something so personal to our family.) Overall, we are happy to be a part of the challenge in the coming years because of its positive message, results, and awareness for the local community and UCP-OC. Thanks UCP National for bringing the World CP Challenge to the United States!

Until next time,
Katy

UCP SmartBrief

Disability Update

Virginia Tech clinic seeks new treatments for cerebral palsy
The Virginia Tech Carilion Research Institute has created the Neuromotor Research Clinic to find new treatments for cerebral palsy. A $4.2 million NIH grant will be used for a program that tracks 135 children with CP who will get high-intensity therapy for hemiparesis. The Roanoke Times (Va.) (8/15)
 
Cerebral palsy a risk factor for severe flu-related complications in children
Medical records gathered from 79 hospitals across 12 countries revealed six risk factors for identifying children at greater risk of suffering severe complications due to influenza. The risk factors included dehydration, breathing problems, need for oxygen therapy, heart rate above the normal age-based range, and history of conditions such as chronic lung disease, cerebral palsy and developmental delay. The findings were published in the British Medical Journal. The New Zealand Herald (8/15)
Other News

Assistive Technologies

How iPads make education more accessible to students with disabilities
The range of mobile applications available on the iPad offers many options for students with various disabilities, adaptive technology expert Therese Willkomm said during a four-day iPad boot camp in Concord, N.H. This article highlights some of the apps discussed at the conference, such as TextGrabber, which reads aloud pictures taken of text. Concord Monitor (N.H.) (8/15)
 
Companies ask FCC to exempt e-readers from accessibility rules
Companies such as Amazon, Sony and Kobo asked the Federal Communications Commission to exempt their e-readers from requirements that they be accessible to people with disabilities. The companies said e-readers are not designed or marketed for advanced communications services, but disability advocates disagreed and pointed out that some of the devices are being marketed for school use. Disability Scoop (8/14)

 

Transitions

Some Va. students with disabilities receive incorrect scorecards
Virginia school officials will meet with representatives from education and testing company Pearson to discuss the more than 4,000 incorrect scorecards that were given to students who took the Virginia Alternative Assessment Program. Officials are saying the problem arose when students’ scores were converted into proficiency levels — fail, pass/proficient or pass/advanced. The Washington Post (tiered subscription model) (8/13)
 
Ohio bakery helps workers learn business operation skills
Crumbles Bakery in Poland, Ohio, hired workers with disabilities, providing employment and teaching them how to run a business. Workers participate in all aspects of the business, from packaging and baking to cleaning. WFMJ-TV (Youngstown, Ohio) (8/18)
 
Other News

UCP News

World CP Challenge starts in one month!
Have you registered your team for the World CP Challenge yet? This four-week fitness activity helps to support people with cerebral palsy and other disabilities, and starts Sept. 4 and ends on World Cerebral Palsy Day, Oct. 2. Teams of four challenge themselves to take 10,000 steps a day — and nearly any activity, from walking to biking to yoga, can be converted into steps. Join today to get active and help support a great cause!Help Life Labs make the 2013 Design-athon a success!
 
UCP’s Life Labs is partnering with Enabled by Design to hold the 2013 Enabled by Design-athon, a two-day event dedicated to finding innovative solutions to problems faced by people with disabilities. Through presentations, speeches and active designing, the Design-athon is a great way to jumpstart ideas that make a difference in the lives of people with disabilities. Check out the Life Labs blog to learn more about the Design-athon and how to get involved.
 
Some people grumble because roses have thorns; I am thankful that the thorns have roses.”
— Jean-Baptiste Alphonse Karr,
French critic

Life’s a Journey With CP and Me

katyfd-225x300Hi Everyone,

Wow, it certainly has been awhile since I have blogged for UCP-OC! I am happy that things have slowed down for me a bit, so I can share with you all, what I have been up to this summer.

I just finished my sophomore year of college at Soka University, here in Orange County. It was a busy semester, but I enjoyed it so much and I am proud of what I have accomplished. I haven’t blogged in a few months for UCP because I have been recovering from surgery since the end of my semester, too! Due to the imbalance of my body and pressure on my feet from having CP, I’ve been dealing with stress fractures in both of my feet over the past year. Two surgeries later,  I am happy to say I am healing, walking again, and on the road to make a full recovery! It’s been a stressful journey, but as a result, I am much more in-tune with my body and I am focusing on doing more physical therapy, strength training, and yoga to get back to where I was before my injuries.

I also have been able to volunteer more at UCP-OC! Alongside UCP-OC’s Marketing and Development Coordinator, Elizabeth Eckman, I am helping to promote the World CP Challenge, a 4-week fun and interactive fundraiser that supports our very own center right here in Irvine! There will be more information to follow in the coming weeks, but if you are interested please email myself at kfetters@ucp-oc.org or Elizabeth at eeckman@ucp-oc.org  and take a moment to check out their website here: www.worldcpchallenge.org/ucpoc.

Summer time is busy with internships for college students, and I started my summer off with a part-time internship with a music production company in Venice, CA called Mophonics Music and Sound. It’s been fun getting to experience a new environment and change of atmosphere from the quiet of the suburbs here. I am able to sit in on most production calls and talk with music composers and songwriters about their work with ad agencies or even aspiring musicians and bands. This company works to provide their clientele with original and fun music to any type of commercial or movie reel that needs some creative voice behind it. I’ve always enjoyed writing and music, so to combine and pursue my love of both behind such a talented group of people would be so exciting!

I hope you all had a fun and safe 4th of July, and please enjoy the rest of this beautiful summer month! Thanks everyone!

-Katy

———

For those of you who don’t know me, My name is Katy Fetters and I have cerebral palsy on the left side of my body… and I am also the creator of TeenCP! (www.teencerebralpalsy.com) TeenCP is a blog that has become a great resource over the past four years for teens and young people with cerebral palsy to connect and find the support that they may not find otherwise find. If you haven’t already “liked” the page on Facebook, be sure to type in TeenCP and find us there, too!

Do you have your team?

 

We would like to invite you to participate in the World CP Challenge – an event centered around physical fitness, encouraging personal well-being and teamwork, while supporting the local community.

REGISTRATION is OPEN
www.worldcpchallenge.org/ucpoc

In teams of four, participants track their daily step count by wearing a pedometer, and record their results on the interactive Challenge website. The aim for each team is to reach the summit by the end of the four weeks. There are three different levels to choose from, depending on the fitness level of the team (and how ambitious they are).

The World CP Challenge is not just about walking your way to better health – participants can run, cycle, swim or even play lawn bowls to reach their daily step target. There are more than 40 activities you can convert to steps including activities suitable for people with a disability.

Play this short video below for more details on the campaign.

HOW IT WORKS

Registrations are almost open so please visit http://www.us.worldcpchallenge.org/ucpoc to sign up.

The World CP Challenge runs from 4 September to 4 October 2012. The cost is $25 per adult or $10 per child. Each participant will receive 2 pedometers, a fundraising booklet and gain access to the interactive website once registered.

Please pass on this information to anyone you think may be interested including friends in large and small organizations, schools and community groups.

BENEFITS

Improve your health and wellbeing

Increase motivation

Be more productive

Encourage teamwork

Support the local community

You will be making a huge difference to the lives of children at United Cerebral Palsy of Orange County!

If you are interested or have questions please contact: Elizabeth Eckman, eeckman@ucp-oc.org 949.333.6412

World Cerebral Palsy Day!

 

At long last, the countdown is over, and the day has finally arrived. Today we celebrate the first-ever World Cerebral Palsy Day and the kick-off of the World CP Challenge! These global campaigns are meant to serve as a catalyst for innovative change for the 17 million people living with CP across the globe.
 
“The World CP Challenge and World CP Day provide a great way for people around the world to step up, get involved, and support the approximately 57 million Americans living with cerebral palsy and other disabilities, as well as the estimated 650 million individuals worldwide. By committing to just one month of activities, people can make a lasting difference for those living with and impacted by CP and other disabilities,” said Stephen Bennett, President & CEO of UCP. “I challenge everyone to take part and walk, step, or roll their way to supporting people with cerebral palsy around the world.”

So, what’s in a day?

  • As we celebrate World CP Day, head over to worldcpday.org and submit an idea you have on what would make the world a better place for those living with CP. Afterward, be sure to vote for your favorite submissions. Ideas and voting will be open through September 30. In October a panel will review the most popular submissions and select a number of them to put forth in a global campaign, seeking inventors to make them a reality!
  • Have a Facebook page or blog? Use one of our World CP Day avatars as your profile image.
  • For those participating in the World CP Challenge, don’t forget to clip on your pedometers and log your daily activity! Looking to step off on the right ‘foot’ and celebrate World CP Day? The proceeds you help fundraise will go toward vital services and groundbreaking research to help people with CP.  So spread the word; let everyone know about the virtual mountain you’re climbing and why it’s so important to you and the people we serve. When you log in to the Challenge website, click over to the “Raise Funds” section and you’ll see an area to send a pre-written email and below that, a variety of posters to put up in your office.

Brave Kids–August Newsletter

Does Having a Pet Change Your Child’s Behavior?

Think twice before telling your child “no” the next time he or she begs you for a furry friend. A new study evaluated the association between the presence or arrival of pets in families with an individual with autism and the changes in his or her social behaviors and development. While animal assisted therapies are used widely but their relevant benefits have never been scientifically evaluated. Read more from DisabiltyScoop about the study.

 

 

Are Apps on Your Back to School List?

Transitions back to school are always tough with new teachers, classrooms, classmates and routines. But as with most things, there’s an app for that. Which app is right for you and your child? One collection of apps, made by Panther Technology, are built around principles of Universal Design – to foster inclusion in education through access. Panther apps incorporate innovation and intuitiveness while focusing on the fundamentals of reading, writing and arithmetic. To learn more about Panther apps click here.

Or check out some other recommendations for elementary, middle school and high school apps.   

 

World Cerebral Palsy Day and Challenge

This September United Cerebral Palsy, Brave Kids’ parent organization, will be celebrating the first-ever World Cerebral Palsy Day-a kick off to the World CP Challenge, a global campaign promising nothing short of changing the world!

World Cerebral Palsy Day, on 4 September 2012, has the theme ‘Change my world in 1 minute’. People with CP, their family and friends suggest ways to improve the quality of life of people with CP. Each idea is posted on the website as text or video and will only take one minute to read or watch. During September, everyone is encouraged to go online, review the ideas and vote for the concepts that will have the greatest impact on people’s lives. At the end of September, the World Cerebral Palsy Day Panel will select the best ideas, solutions and inventions for people with cerebral palsy. In the following few months social activists, researchers, inventors, and innovators propose how they would make these ideas a reality and financial assistance will be provided to a selected few to assist their project. Check out the World Cerebral Palsy Day website to make a suggestion or to vote on other people’s ideas. 

On September 4 — World CP Day — United Cerebral Palsy is launching an exciting four-week team activity called the World CP Challenge, and we want you to be part of it! It’s a fun and healthy way to improve your fitness while improving the lives of people with cerebral palsy.

The World CP Challenge is a perfect activity for your family, your coworkers or anyone who’s interested in getting fit and supporting United Cerebral Palsy. When you register, you will receive a “Challenge Kit” that will include a pedometer to track your daily step count. Your aim is to climb a “virtual mountain” with your team, and reach the summit by the end of the four weeks. Your progress will be charted on our interactive website.

It’s not just about “walking” your way to better health – you can run, bike, or swim to reach your daily step target. There are more than 40 activities you can convert to steps, including activities suitable for people with a disability. It’s an easy and a fun way to get fit while raising much-needed funds for people with cerebral palsy. Register today.

World CP Challenge

 

We would like to invite you to participate in the World CP Challenge – an event centered around physical fitness, encouraging personal well-being and teamwork, while supporting the local community.

www.worldcpchallenge.org/ucpoc

In teams of four, participants track their daily step count by wearing a pedometer, and record their results on the interactive Challenge website. The aim for each team is to reach the summit by the end of the four weeks. There are three different levels to choose from, depending on the fitness level of the team (and how ambitious they are).

The World CP Challenge is not just about walking your way to better health – participants can run, cycle, swim or even play lawn bowls to reach their daily step target. There are more than 40 activities you can convert to steps including activities suitable for people with a disability.

Play this short video below for more details on the campaign.

 

HOW IT WORKS

Registrations are open so please visit http://www.us.worldcpchallenge.org/ucpoc to sign up or simply respond to this email.

The World CP Challenge runs from 4 September to 2 October 2012. Registrations close 17 August 2012.

The cost is $25 per adult or $10 per child. Each participant will receive 2 pedometers, a fundraising booklet and gain access to the interactive website once registered. 

Please pass on this information to anyone you think may be interested including friends in large and small organizations, schools and community groups.

 

BENEFITS

    Improve your health and wellbeing

    Increase motivation

►    Be more productive

    Encourage teamwork

    Support the local community

You will be making a huge difference to the lives of children at United Cerebral Palsy of Orange County!

If you are interested or have questions please contact: Elizabeth Wylie, ewylie@ucp-oc.org 949.333.6412