NIH promotes data sharing through Down syndrome patient registry | States nudge insurers on child-only health plans | Recognizing specific language disorders among students
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October 30, 2012
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Disability Update
NIH promotes data sharing through Down syndrome patient registry
PatientCrossroads has partnered with the National Institutes of Health to create a Down syndrome patient registry to organize contacts and data exchange among patients, families, parent groups and researchers. "The registry links those seeking volunteers for their research studies with those who most stand to benefit from the research," said Dr. Yvonne T. Maddox, deputy director of the NIH's Eunice Kennedy Shriver National Institute of Child Health and Human Development. Healthcare Informatics online (10/26)
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States nudge insurers on child-only health plans
Many health insurers stopped selling child-only policies after the Affordable Care Act forbade denying coverage to anyone younger than 19 on the basis of a pre-existing medical condition. Many insurers have since re-entered the market and others have entered for the first time after 22 states and the District of Columbia implemented new laws or regulations that encourage insurers to sell child-only plans. Kaiser Health News (10/22)
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Recognizing specific language disorders among students
Specific language disorders may be difficult to identify, write Dorothy Bishop, professor of neuropsychology at the University of Oxford and Becky Clark, a speech and language therapist. To help, the pair and a group of academics have formed Raising Awareness of Language Learning Impairments -- or RALLI -- and a YouTube Channel that offers related tips and ideas for teachers and others. The Guardian (London)/Teacher Network Blog (10/24)
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Assistive Technology
Smartphone is designed for individuals with visual impairments
A new smartphone by Qualcomm and Project RAY is designed specifically for users who are visually impaired. It includes an interface that utilizes audio cues and vibrations. The device is being tested at the Central Library for the Blind in Israel, where 100 people are using it to access books and other reading materials in audio format. (10/23)
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Students with autism form iPad band
Students with autism are part of a band in which the only instruments are iPad tablet computers. The students, who attend a school in New York City, use the iPads in music class to play complex compositions. The band's first original single, "4-2-4," is being sold for 99 cents on iTunes, with proceeds benefiting the school. (10/25)
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Big Tent Jobs connects workers with employers
Adam Kaplan started the Detroit staffing company Big Tent Jobs because he was dismayed by the high unemployment rate among people with disabilities. Kaplan, whose daughter died of complications from cerebral palsy, helps job seekers find the right fit and get through the interview process, and familiarizes businesses with a talent pool they do not always know how to engage. "Every disability is different," Kaplan said. "Every position and person is a case-by-case basis." WWJ-TV/WWJ-AM (Detroit) (10/23)
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Business mentors show students with disabilities career paths
Forty-nine students with disabilities spent a day with local business professionals during the annual Disability Mentoring Day in Leon County, Fla., as part of a statewide effort focused on getting an early start to creating career paths. Maria Folsom of Ability 1st said the program helps get students ready for the workplace and gives them a better idea of job expectations. Tallahassee Democrat (Fla.) (tiered subscription model) (10/25)
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UCP News
Results of UCP's First Annual World CP Day and Challenge
On Sept. 4, the first annual World CP Day was celebrated, marking the beginning of a month dedicated to raising awareness and support for people living with cerebral palsy. People submitted 461 ideas to the "Change my world in 1 minute" contest, which featured ideas that will help people with cerebral palsy through improved mobility, independence, accessibility or social connections. The winning ideas will be announced in March 2013 and given grants to help turn their ideas into reality. World CP Day also kicked off the World CP Challenge, a fundraising and fitness effort that raised $774,399 worldwide to help support people living with cerebral palsy. Learn more about the World CP Day and Challenge.
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UCP announces new national leaders
United Cerebral Palsy has elected four new members to its national Board of Trustees and four leaders to serve as officers of the Board. Edward G. "Woody" Connette, an attorney in Charlotte, N.C., will lead the Board of Trustees as its new Chair. Connette has long had an interest in public policy, litigation related to disabilities, health care and mental health and has been involved with disability groups for more than 20 years. He is joined on the Board by Ian Ridlon, Mark Boles and Pamela Talkin, and by new members Michael Burke Jr., Ruth Gullerud, Melvin "Chip" Hurley, Linda Maguire and Rob White. Learn more about UCP's new leaders.
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Sometimes we stare so long at a door that is closing that we seek too late the one that is open."
-- Alexander Graham Bell,
American inventor
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About UCP
United Cerebral Palsy (UCP) educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. Together with nearly 100 affiliates, UCP has a mission to advance the independence, productivity and full citizenship of people disabilities by supporting more than 176,000 children and adults every day—one person at a time, one family at a time. UCP works to enact real change—to revolutionize care, raise standards of living and create opportunities—impacting the lives of millions living with disabilities. For more than 60 years, UCP has worked to ensure the inclusion of individuals with disabilities in every facet of society. Together, with parents and caregivers, UCP will continue to push for the social, legal and technological changes that increase accessibility and independence, allowing people with disabilities to dream their own dreams, for the next 60 years, and beyond. For more information, please visit

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