A Sibshop is a special program just for brothers and sisters of kids with disabilities. A Sibshop is a fun filled day designed to help kids get to know fellow siblings, play games and learn to embrace the meaning of having a sibling with a disability. Sibshops are a great way for brothers and sisters of kids with special needs to gain peer support in an entertaining and recreational way.  The Down Syndrome Network of Northern Nevada is hosting a sibshop event this Saturday March 31, 2012.  The sibshop will be located at Damonte Ranch High School from 10:00am – 2:00. This event will give children ages 8-13 a rare opportunity to talk about the good and not-so-good aspects of having a sibling with a disability, also to learn about how peers feel about their similar situations.

Who: Parents and caregivers of children (of all ages) with (any and all) disabilities

What: Parents expressing themselves through writing

When: Last Thursday of Every other Month 7:00-8:30 pm

At our upcoming meeting, Thursday, March 29, we are honored to have a guest speaker, Shaunta Alburger. Shaunta has been a professional writer for twelve years. She will be sharing some of her books with us and will be talking to us about the importance of having characters who have disabilities in books. Shaunta is a Partners in Policymaking Graduate and mom to three children, a wonderful son, Nicholas, age 18, who happens to have autism, and two daughters, Adrienne, age 19 and Ruby age 7. Come hear Shaunta share her experiences with us!

University of Nevada, Reno

The Nevada Leadership Education in Neurodevelopmental and Related Disabilities (NvLEND) program at the University of Nevada, Reno (UNR) is pleased announce the admission of the first class 12 interdisciplinary trainees. The NvLEND is a cooperative project of the Nevada Center for Excellence in Disabilities (NCED) in the College of Education, the Department of Speech Pathology, and the Division of Health Sciences. On September 24, the trainees will attend their first full day training session from 10:00 a.m. – 6:00 p.m. at the Nell J. Redfield Bldg Building in the Department of Speech Pathology and Audiology at the University of Nevada, Reno. The trainees previously attended a half-day orientation on September 10. The goal of NvLEND programs is to improve the health of infants, children, and adolescents with autism and other disabilities by preparing practicing professionals, parents, and pre-service graduate level trainees from diverse professional disciplines to assume leadership roles in their respective fields and by insuring high levels of interdisciplinary clinical competence. This first group of trainees includes students and professionals from physical therapy, occupational therapy, pediatric dentistry, education, special education, psychology, social work, speech pathology, nutrition, pediatrics, and families. It important to note that parents of children with disabilities participate in the training with professionals and family is treated as discipline. The NvLEND trainees for 2011-12 are:

• Amanda Backlund, DPT, Reno
• Courtney Carsman, DOT, Reno
• William Dahlke, Pediatric Dentistry Fellow, Las Vegas
• Joy DeGuzman, M.D, Pediatrician, Parent, Elko
• Sandra Em, Reno, Educator, Nachez Elem, Pyramid Lake Reservation
• Cynthia Oceguera, Nutrition, Wadsworth, Pyramid Lake Reservation
• Linda O’Neil, Reno, Special Education Early Intervention, Parent
• Marisela Pallares, Reno, UNR Psychology Student
• Donica Pierce, MSW, Reno
• Julie Smith, Speech Path, Reno
• Nicole Sweeney, Reno, Pediatric Physician Assistant
• Kathleen Whitlow, Truckee, CA, Parent

This interdisciplinary training program is made possible by a new grant for $508,00 per year for 5 years from Health Resources and Service’s Administration’s (HRSA) Maternal and Child Health Bureau (MCHB). Dr. Stephen Rock, NCED; Dr. Erika Ryst, Department of Psychiatry and Behavioral Sciences; and Dr. Debra Vigil, Department of Speech Pathology and Audiology are project co-directors.

As of July, there are 43 LENDs in 36 states and the District of Columbia (for a directory of programs see http://www.aucd.org/LEND). While each LEND program is unique, they all provide interdisciplinary training, have faculty and trainees in a wide range of disciplines, and include parents or family members as paid program faculty and as program participants. They also share the following objectives:

• advancing the knowledge and skills of all child health professionals to improve health care delivery systems for children with developmental disabilities;
• providing high-quality interdisciplinary education that emphasizes the integration of services from state and local agencies and organizations, private providers, and communities;
• providing health professionals with skills that foster community-based partnerships; and
• promoting innovative practices to enhance cultural competency, family-centered care, and interdisciplinary partnerships.

Faculty and community professionals participating in the NvLEND include:

•  Eric Albers, Social Work
• Tami Brancamp, Speech Pathology
• Melanie Crawford, Psychology
• Glen Dunlap, Positive Behavioral Supports/ECSE
• Patrick Ghezzi, Psychology
• Kate Green, Early Childhood Special Education
• Robbin Hickman, UNLV Physical Therapy
• Lynn Kinman, Dev Pediatrics
• Jan Marson, Occupational Therapy
• George McKinlay, Assistive Technology
• Colleen Morris, Genetics
• Kathy O’Connor, Pediatrics
• Stephen Rock, Special Education
• Patsy Ruchala, Nursing
• Erika Ryst, Child Psychiatry
• Barbara Scott, Nutrition
• Dennis Uken, Audiology
• Debra Vigil, Speech Pathology
• Liz Williams, Parent
• Wei Yang, Health Informatics

For more information on please visit the NvLEND website at nced.info/LEND or contact:

Stephen L. Rock, Ph.D.

The original iPortal app connects to powerchairs via Bluetooth and displays info like battery life, speedometer, a speed-range indicator, compass and also stores emergency contact info.

The new accessibility upgrade will enable people to use their wheelchair joystick to better interact with their smart phones for those who can’t take full advantage of their devices’ touch interfaces. Users will control their smart phone with their wheelchair joysticks to control an on screen cursor, much like a computer mouse.

Using a menu system, users can select a variety of inputs simulating touch gestures like swipe, two-figure scrolling, and pinching. You can also use the joystick to input off-screen commands like pressing the home button, adjusting volume, shaking and rotating the screen.

iPortal interface

The iPortal app can be downloaded from the iTunes app store for free, but the Accessibility Upgrade has yet to be added. Info on the iPortal app can be found at their website along with instructions on how to download the app on a iPhone or iPod touch.

Olmstead ruled that states must eliminate policies that unnecessarily segregated people with disabilities and provide community-based services, like medical care, to those with disabilities in the most integrated setting appropriate.

The document provides information on the Americans with Disabilities Act (ADA) and its Integration Mandate, including guidelines about inclusive settings and how to file complaints. Along with the document, the ADA has launched a new section on the Olmsted decision.

“The Olmstead decision recognized the rights of individuals with disabilities to live the lives they choose, but its promise has not yet been fully realized. Far too many people remain segregated in institutions when they would rather be thriving in their communities,” said Thomas E. Perez, Assistant Attorney General for the Civil Rights Division. “The Justice Department is committed to making the promise a reality, and will continue to aggressively enforce Olmstead.”

Read more on the release here.

Click to read about the Olmstead v. L.C. case.

View the ADA’s new Web site at www.ada.gov/olmstead, and visit www.ada.gov/olmstead/q&a_olmstead.htm to read the full Technical Assistance Document.

The study is the first global estimate of people with disabilities in 40 years.

Findings include:

• People with disabilities are more than twice as likely to find healthcare providers skills inadequate to meet their needs and three times more likely to be denied medical care than the non-disabled.
• People with disabilities are 50% more likely to experience catastrophic expenditures than the non-disabled.
• In other countries, the employment rate of people with disabilities is 44% compared to a 77% employment rate of people without disabilities.

The study stresses that few countries have adequate mechanisms to serve the needs of those with disables. WHO urges governments to invest in programs and services and adopt national strategies to aid those with disabilities.

“We have a moral duty to remove the barriers to participation for people with disabilities, and to invest sufficient funding and expertise to unlock their vast potential… It is my hope this century will mark a turning point for inclusion of people with disabilities in the lives of their societies.” Disabled theoretical physicist Stephen Hawkling said.

Read more about the study here.

There is no cost to participate in the Special Kids Rodeo.  Registration is limited to individuals under the age of 18 who are receiving special education services with an IEP and/or medical services.

Those who participate in the Special Kids Rodeo will also receive  dinner, gifts, and three general admission ticket vouchers for an evening performance of the Reno Rodeo for the participant and his/her parents/guardians.  The ticket voucher may be exchanged for Sunday 6/19, Monday 6/20, Tuesday 6/21 or Wednesday 6/22 night tickets.

To register, go to: http://www.renorodeofoundation.org/images/2011-SKR/2011-Special-Kids-Rodeo-Application.pdf

LONDON – The first study to link a childhood vaccine to autism was based on doctored information about the children involved, according to a new report on the widely discredited research.

The conclusions of the 1998 paper by Andrew Wakefield and colleagues was renounced by 10 of its 13 authors and later retracted by the medical journal Lancet, where it was published. Still, the suggestion the MMR shot was connected to autism spooked parents worldwide and immunization rates for measles, mumps and rubella have never fully recovered.

A new examination found, by comparing the reported diagnoses in the paper to hospital records, that Wakefield and colleagues altered facts about patients in their study.

The analysis, by British journalist Brian Deer, found that despite the claim in Wakefield’s paper that the 12 children studied were normal until they had the MMR shot, five had previously documented developmental problems. Deer also found that all the cases were somehow misrepresented when he compared data from medical records and the children’s parents.

Wakefield could not be reached for comment despite repeated calls and requests to the publisher of his recent book, which claims there is a connection between vaccines and autism that has been ignored by the medical establishment. Wakefield now lives in the U.S. where he enjoys a vocal following including celebrity supporters like Jenny McCarthy.

Deer’s article was paid for by the Sunday Times of London and Britain’s Channel 4 television network. It was published online Thursday in the medical journal, BMJ.

In an accompanying editorial, BMJ editor Fiona Godlee and colleagues called Wakefield’s study “an elaborate fraud.” They said Wakefield’s work in other journals should be examined to see if it should be retracted.

Last May, Wakefield was stripped of his right to practice medicine in Britain. Many other published studies have shown no connection between the MMR vaccination and autism.

But measles has surged since Wakefield’s paper was published and there are sporadic outbreaks in Europe and the U.S. In 2008, measles was deemed endemic in England and Wales.