UCP News Brief

This week many of interesting articles have caught my eye, and although I posted a couple of them on our Facebook page I thought I would share them with you all in one place.  A few of these came from the UCP SmartBrief, so as I receive the SmartBrief monthly I will make sure to share it with you on the blog. This is a compilation of the top 10 stories and I thought many of you would benefit from reading them.
So please scroll through and look at a few that interest you!  Please leave us a comment with your opinions!
-Elizabeth Wylie


Disability Update

  • Psychiatric group OKs changes to diagnostic manual
    The American Psychiatric Association’s board of trustees approved Saturday the fifth edition of its diagnostic manual for mental conditions. The guide includes Asperger’s syndrome and “pervasive developmental disorder, not otherwise specified” in the autism spectrum disorder category, and introduces a diagnosis of “disruptive mood dysregulation disorder” for children. Bloomberg (12/2), The Wall Street Journal (12/1)     
  • Disability hiring rule would be costly
    The Department of Labor’s proposed disability hiring rule will be costly for companies, writes Sara Cann. A study by the Associated General Contractors of America found that an average-sized construction firm would need to spend about $14,000 annually — for each project site — nearly 30 times the DOL’s estimate of $473. Fast Company magazine (11/2012)     

Other News

Assistive Technology

  • Website supports better library access for students with disabilities
    A new website offers librarians a self-paced online curriculum of videos, games and assessments to help them better meet the needs of students with disabilities. Project ENABLE (Expanding Nondiscriminatory Access by Librarians Everywhere) was developed by Ruth V. Small of Syracuse University’s School of Information Studies after she conducted a survey of school librarians and found that they gave themselves low scores in the area of disability services. School Library Journal (11/30)     
  • Scientists design robots for individuals with disabilities
    Two scientists, Kaijen Hsiao and Matei Ciocarlie, at Willow Garage in Menlo Park, Calif., are developing robots to help individuals with disabilities be more independent in their homes. Still in the design stage, Hsiao and Ciocarlie are working with an individual with quadriplegia, on designing a robot to do basic household tasks, such as getting food from the refrigerator. San Jose Mercury News (Calif.) (free registration) (12/1)     
  • As online videos rise, those hard of hearing seek captions
    Videos are increasingly prevalent on the Internet, leaving out many people who cannot hear or are hard of hearing. Advocates for people who are deaf are seeking regulations requiring websites such as YouTube and Netflix to provide content captions. Some sites already are making content more accessible with automated captioning software. “Access to information has been labeled as a civil right,” said James House, public relations director for Telecommunications for the Deaf and Hard of Hearing. The Washington Post (11/28)     
  • Other News


UCP News

  • Progress on the Convention on the Rights of Persons with Disabilities
    United Cerebral Palsy and a broad coalition of disability organizations are working together to get the U.S. Senate to ratify the Convention on the Rights of Persons with Disabilities. This week, Senate Majority Leader Harry Reid called the treaty up for a vote! Learn more about the treaty and join in UCP’s efforts to finally ratify the CRPD.     

United Cerebral Palsy and #GivingTuesday
On Tuesday, Nov. 27, United Cerebral Palsy, the Huffington Post and other organizations observed the first annual #GivingTuesday, a day after the Black Friday and Cyber Monday shopping rushes, dedicated to raising support for philanthropic causes. UCP President Stephen Bennett sheds light on what this support looks like for people living with disabilities and the difference even a small donation can make. Read Stephen’s story and learn more about how to take part in #GivingTuesday.     


My Child Without Limits: June Newsletter

Fathers: A Subject Area Often Overlooked 

In honor of Father’s Day, My Child Without Limits would like to call attention to an often overlooked subject- the needs and feelings of fathers of children with disabilities. The way in which fathers deal with a disability diagnosis is typically quite different than the way a mother copes.  A father’s approach tends to be more instrumental with a focus on future planning. Recognizing the differences between a mother’s and father’s reaction is important to both the family and to the way services should be provided. The Center for Inclusive Child Care created a PowerPoint Presentation that goes into more detail on the following topics-     

  • Tips for fathers of children with special needs
  • General observations about fathers’ parenting styles
  • Research on fathers of children with special needs
  • Suggestions for helping new fathers 

Click here for the PowerPoint presentation

You can also find more information and resources on this topic at The Father’s Network. The Network advocates for fathers of children with special health needs through support and mentoring programs, conferences and training seminars, a newsletter, a Web page, development of curriculum, and ongoing work with professionals to enhance service delivery for all family members.

Want to read personal stories from fathers of child with special needs? The National Center for Fathering has put together a list of books for sale on fathering a child with special needs written by dads, for dads.

New Autism Report Shows Late Diagnosis of Children with Autism

A new report from the Centers for Disease Control finds that one-half of school-aged children with Autism Spectrum Disorders (ASD) were aged 5 years and older when they were first identified as having ASD. This is problematic since these children might miss out on early intervention services, which take place during ages 0-5. This is a vital time because this is when a child learns and develops at the fastest rate. Learn more about the importance of early intervention and find services in your community on the My Child Without Limits website.

Tips for Summer Trips in the Car

It’s summer time and many families will be hitting the road in search of fun and adventure. If you are traveling with a child with special needs, there are some important safety precautions to consider. Your child might require a specialized car seat or vehicle modifications to ensure safe transportation. The American Academy of Pediatrics has some Tips on Transporting a Child with Special Needs.

The National Center for the Safe Transportation of Children with Special Health Care Needs at the Riley Hospital for Children provides a wealth of information on safe care travel including recommended types of safety restraints and safe positioning by specific condition, behavioral modifications to ensure children remain safely seated, and much more. Check the website for more information. Safe travels!

Expanding the MCWL Experience 

For more than three years, families have relied on mychildwithoutlimits.org for information, resources and support to nurture and care for their children living with a spectrum of disabilities. We rely on generous support from people like you to continue offering this valuable resource for parents and caregivers. Your contributions help us provide welcome packs to new parents, populate the web site with up-to-date and relevant tools and resources, and provide a place where more than 1,300 parents connect with each other. In the coming months, we hope to expand the resources of My Child Without Limits even more by adding a dedicated “Medical Director” to the website to provide regular updates and interactive Q&A sessions with you!

October Child of the Month: Alexa


Alexa is an 18 month-old with the cutest pony-tails on the top of her head. Her smile melts your heart and you cannot help but smile back! Even better, Alexa knows exactly what to do when a camera is present. Lights, camera, action…she’s a star! Alexa even knows how to perform behind a camera too! While I was taking pictures of her, she took my camera and started taking pictures of herself, simply adorable.

Alexa has hypotonia, which means she has low muscle tone and hyper extension in her limbs. At six months the family saw that she had trouble bearing weight, and went to see a doctor. After many tests and a diagnosis, Dr. Lin suggested the family come to UCP-OC. Her mother only says great things of our Therapy Center and loves that Melanie and Jeanne tell her what to do at home and that it is a professional organization with a kid friendly atmosphere.

Alexa attends UCP-OC for physical therapy with Melanie, and speech therapy with Jeanne. Who knew physical therapy could be so fun?! Alexa’s physical therapy started with the tire swing so she could work on standing with support, then went into the ball pit to work on strengthening her core, next she went to the piano and started playing (hitting) a lovely melody and that was all in just the first 5 minutes! During her speech therapy Jeanne works with Alexa to start making sounds and introduce words to her vocabulary. Singing the words allows Alexa to hear the sound each letter makes, so that learning new words becomes easier. In just a short 10 months they have seen her start pulling up, taking steps and strengthening her core. Alexa certainly will live a Life Without Limits!

 “Watching her grow is a huge blessing even in the 10 months we have been here.”

-Anna, Alexa’s Mother


(This last picture Alexa took herself with my iPhone. Too cute!)


New in Assistive Technology

The Apple iPad…it’s as though the word is just lingering in the air today. Why is that you ask? The new iPad 2 comes out today! This means that there is a new iPad available, but you can also find the first iPad at a much more affordable price! The new iPad promotional video even features a lengthy portion to the unexpected use of the iPad by kids with special needs.

As full supporters of living a life without limits we continually look for ways that your children can communicate, learn and play effectively. Recently we have come across a couple applications that are innovative and that really work, and conveniently available on the iPad. Many special educators, speech pathologists and occupational therapists use these applications now and have seen positive results. These apps make communication fun and are great for kids with autism, down syndrome, cerebral palsy and other special needs.

We are really excited to tell you about these apps! First we would like to introduce you to the Proloquo2Go. This is a product from Assistive Ware that provides a full-featured communication solution for people who have difficulty  speaking. It has a text to speech feature that will allow your child to type or select an action when they have a hard time communicating their needs or wants. This is also a learning tool for young toddlers so that they can learn their shapes, colors and expand on their vocabulary! UCP-OC has recently, through a Bellows Grant, provided 3 year-old Gabe with an iPad and Proloquo2Go application and his mother says, “He has blossomed with his speech production, and is now imitating words constantly and recognizes shapes, colors and the alphabet…Not only has the iPad improved his speech production, it has been a tool to help him learn and share with the rest of the world all he knows, even with limited speech abilities.”

You can find more information at http://www.proloquo2go.com/About/article/what-is-proloquo2go this app is available on the iPad, iPhone and iTouch and is $189.

The second application we want to tell you about is called Tap to Talk and is similarly offered on Apple products as well as the Android, Nintendo DS and PCs. It is a yearly subscription for $99.95 and they offer a 30 day no questions asked trial. The program originates on your computer and the apps for your mobile devices come free. On this app your child has 2,500 pictures to choose from so he/she can organize and make their own albums. The text to speech option allows your child to speak to you, or allows you to record your own voice to different pictures to stimulate memory for your child.

For more information go to http://www.taptotalk.com/

Of course before making a purchase look at reviews online and try it out! These applications give children the opportunity to learn and share with the rest of the world despite their limited communication abilities. Allowing them to be independent…truly living life without limits!

written by: Elizabeth Wylie