NATIONAL DISABILITY NEWS

Friends of NCBDDD & ACA Implementation: National Disability Navigator Resource Collaborative Feb 27, 2014

Webinar Date: Thursday, March 6, 2014   Time: 12:00 PM - 1:00 PM EST

Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/121206001

Join the next Friends of NCBDDD webinar to learn more about the National Disability Navigator Resource Collaborative (NDNRC), which provides disability information and support to navigators and other enrollment specialists as they assist consumers with enrollment through the Affordable Care Act insurance marketplaces.

The American Association on Health and Disability (AAHD) along with 6 other national disability organizations have partnered to form a cross-disability resource coalition known as the NDNRC. Funded by the Robert Wood Johnson Foundation, the NDNRC provides expertise and assistance to navigators and enrollment specialists on disability information related to enrolling in the right healthcare plan under the Affordable Care Act. The webinar will introduce the NDNRC and highlight resources available through the website.

Presenter: Karl D. Cooper, Esq., Project Associate, AAHD

Robert E. Cooke, MD Passes Away Feb 11, 2014

Robert E. Cooke, M.D., of Oak Bluffs, MA, died Sunday, February 2, 2014, at the age of 93. As medical advisor to Presidents John F. Kennedy and Lyndon B. Johnson, he was an architect of the Great Society program, Head Start, the National Institute of Child Health and Human Development at the NIH, and the Kennedy-Krieger Institute, the world-renowned institution for children with developmental problems at Johns Hopkins University. He was also a medical advisor to the Joseph P. Kennedy Jr. Foundation, served on the Board of the International Special Olympics, and was a member of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. READ MORE

The AADMD Congratulates EP's CEO Joe Valenzano on UNICO Americanism Award Mar 14, 2013

"The American Academy of Developmental Medicine and Dentistry (AADMD) congratulates our colleague Joe Valenzano on the announcement of his being named as the recipient of the 2013 UNICO Americanism Award. UNICO is a national Italian American service organization. The name is the Italian word for unique, one of a kind.

Joe is the Publisher-CEO of Exceptional Parent Magazine and a known advocate, educator and supporter of the disability community. This particular award was in recognition of his work on behalf of military families impacted by disabilities - either a child with intellectual and developmental disabilities or a warrior with an acquired service related disability. Exceptional Parent Magazine has provided military specific editorial content for the Dept of Defense's Exceptional Family Member Program for many years. Joe has served with distinction on a number of advisory boards in the support of our military families. Congratulations to Joe on this recognition."

-- Rick Rader, MD; VP, AADMD External Affairs

AAP Issues New Guidance on Genetic Testing for Children Feb 24, 2013

Genetic testing and screening of minors is widespread, and testing is done routinely on virtually all newborns. In the American Academy of Pediatrics (AAP) policy statement – "Ethical and Policy Issues in Genetic Testing and Screening of Children," in the March 2013 issue of Pediatrics (published online Thursday, Feb. 21) – the AAP and the American College of Medical Genetics (ACMG) issue recommendations on updated technologies and new uses of genetic testing and screening.
READ MORE

Social Security's Proposal to Drop the Term 'Mental Retardation' Jan 30, 2013

Michelle Diament recently reported on Disability Scoop that The Social Security Administration has signaled its intention to start using the term "intellectual disability" in place of "mental retardation." It has been more than two years since Congress required the language switch in all federal health, education and labor policy under Rosa's Law. READ MORE

Creating a National Lipodystrophy Support/Advocacy Organization Jul 2, 2012

Volunteer Consulting Group Governance Matters (VCGGM) is seeking individuals within the lipodystrophy community who are interested in participating in the creation of a national lipodystrophy support and advocacy organization. For more information, visit the VCG website (www.vcggm.com/rare_diseases.php). Or contact Robert Tomaino,(rtomaino@vcg.org) Project Advisor. READ MORE

In Memoriam: Katie Beckett May 22, 2012

If anyone has ever had, or known of a child with special health care needs, they may have heard about the Ill and Handicapped Waiver, also known as the Katie Beckett Waiver. When Katie was six months old she fell ill with viral encephalitis, requiring hospitalization and placement on a ventilator. She was never able to be weaned off the ventilator and, after a couple of years, her family tried to advocate for her to be cared for her at home. READ MORE

Indiana Senator Brent Waltz Highlights New Guidelines for Infant Heart Disease Screening Oct 31, 2011

In less than a minute and for as little as $10, the life of a newborn can be saved.
Sen. Brent Waltz (R-Greenwood) carried the important issue of pulse oximetry testing to state legislators in a new law passed earlier this year and now, the U.S. Department of Health and Human Services has validated Indiana's actions by adding the simple procedure to its list of recommended newborn screenings. READ MORE

Kansas Promotes September as Newborn Screening Month Oct 13, 2011

Topeka— The Kansas Department of Health and Environment (KDHE) is proud to promote Newborn Screening Awareness Month in September. While most newborns look perfectly healthy, there are some diseases that aren't visible. Unless these diseases are identified and treated early, they can cause severe illness, mental retardation, or in some cases death. To test for these diseases, about 24 hours after birth, a baby's heel is pricked and a small sample of blood is collected by the hospital staff. This blood is then sent to the State public health laboratory where it is tested for several different diseases. If the test is abnormal, re-testing must be done to confirm a diagnosis. READ MORE

AAP Issues New Guidance on Genetic Testing for Children Feb 24, 2013

Genetic testing and screening of minors is widespread, and testing is done routinely on virtually all newborns. In the American Academy of Pediatrics (AAP) policy statement – "Ethical and Policy Issues in Genetic Testing and Screening of Children," in the March 2013 issue of Pediatrics (published online Thursday, Feb. 21) – the AAP and the American College of Medical Genetics (ACMG) issue recommendations on updated technologies and new uses of genetic testing and screening.
READ MORE

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