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United Cerebral Palsy

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Inside this Issue

It's Official:
UCP Announces MyChildWithoutLimits.org,
An Online Resource for Parents of
Young Children with Developmental Delays

United Cerebral Palsy (UCP) today announced the launch of My Child Without Limits (MyChildWithoutLimits.org), UCP's pioneering initiative that provides parents of children with disabilities an online resource with critical information that also connects parents to a vital social network of parents of newly diagnosed children ages 0 to 5.

The first realization that your child is going to face the many challenges and obstacles encountered by those who live with a developmental delay or disability can be a lonely, frightening and confusing time. Many parents who have been assisted by UCP have reported that finding the organization and receiving the information and advice our affiliates provide has been a very significant turning point for them.

My Child Without Limits is a place for parents worried that their child is not developing like other children, to find answers to their questions. It is a place where parents know they are not alone after their child has been diagnosed with a developmental delay or disability. The authoritative site and online community are designed to be resources for families and their caregivers and professionals.

The Web site provides access to accurate, user-friendly and relevant disability-related information, resource guides, and experts on early intervention and family support in three basic areas:

  • Understand Help families answer the questions: What are Autism Spectrum Disorder, Cerebral Palsy and Down Syndrome?
  • Plan Provide guidance about where to go for early intervention services, treatments and therapies, assistive technologies, and expert direction and advice.
  • Act Direct parents and caregivers to where they can explore issues surrounding disability awareness, advocacy and lifespan planning.

The community section of My Child Without Limits also offers a venue for parents to communicate with each other, ask questions of professionals and service providers and receive support through the critical period of initial diagnosis.

"I can't think of a better way to reach parents of children with disabilities who are so desperately seeking credible information they can trust," said Stephen Bennett, President & CEO, United Cerebral Palsy, Inc."My Child Without Limits will be the one-stop shop for parents and professionals, and help children with disabilities start achieving a life without limits at an early age."

For more information, please visit www.MyChildWithoutLimits.org.

My Child Without Limits
Teams Up With Including Samuel:
A Film Documentary About Inclusion
For People With Disabilities

Before his son Samuel was diagnosed with cerebral palsy, photojournalist Dan Habib rarely thought about the inclusion of people with disabilities. Now he thinks about inclusion every day. Shot and produced over four years, Including Samuel centers on the efforts of Habib and his family to include seven year-old Samuel in all facets of school and community. The film also features four other families with varied inclusion experiences, plus interviews with dozens of teachers, young people, parents and disability rights experts.

Including Samuel is a highly personal, passionately photographed film that captures the cultural and systemic barriers to inclusion. Says Habib, "Four years ago, I sat at my son Samuel's hospital bedside at Dartmouth Hitchcock Medical Center as he lay in a medically-induced coma. He was four years old and had developed pneumonia from complications following surgery. Samuel's neurologist, Dr. James Filiano, encouraged me to be a photojournalist in the midst of my fear." The result is this documentary that accounts for Habib's experiences with his son.

Including Samuel comes to public television in September and October (Disability Awareness Month) with support from the National Inclusion Project and CVS Caremark All Kids Can.

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Disability Advocates Meet at
the White House in Late August

On August 27, as follow-up to the meeting that President Obama had with disability community representatives on July 24, a group of advocates for home- and community-based long-term services and support, met with Nancy-Ann DeParle and other senior staff at the White House to discuss the Community First Choice (CFC) Option.

The disability representatives thanked the President's staff for his strong leadership on enacting comprehensive health reform that will help advance the goals of the Americans with Disabilities Act by eliminating disability-based discrimination in health care coverage and barring pre-existing condition exclusions.

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Guest Post: A Life Without Limits
Because of UCP of New York City

By Christine Rudd, UCP supporter and past consumer of UCP of New York City services.

I have never thought of myself as different. That's just not the way my family has ever treated me or how I see myself. So, when I was little and couldn't walk because of my Cerebral Palsy (CP) and wanted to play with one of my toys, I remember being told that I could crawl and get it if I wanted it, because there was nothing wrong with me. I never saw that as mean or a bad thing, and I think those words are what continue to push me today.

I started my interaction with United Cerebral Palsy (UCP) at the UCP Center in Brooklyn, New York when I was around two-years-old. One of my earliest memories of that time is being in my classroom singing and playing with a parachute with the rest of my classmates. I also remember a field trip we took to Pennsylvania and having a great time with everyone.

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Ask Lara:
Information on Swine Flu and Children with Disabilities

Q: Are children with cerebral palsy or other developmental disabilities more susceptible to the H1N1 virus (otherwise known as the swine flu)?

A: Children with chronic health problems such as asthma, diabetes, heart disease, metabolic conditions, neurologic and neuromuscular disorders, and pregnant women are at higher risk of having complications from flu.

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