April 2 is U.N.-declared World Autism Awareness Day. A life touched by autism is one forever in search of new information, and answers to the questions “Why did this happen?” and “How can I help my child?” Here’s a brief wrap of some of the latest headlines about the mysterious neurological disorder, which affects as many as 1 in 110 children, according to the Centers for Disease Control and Prevention.

In March, a federal court ruled that the evidence supporting an alleged link between autism and a mercury-containing preservative in vaccines was not persuasive, and that the families of children who have  autism were not entitled to compensation. Vaccine court finds no link to autism

In February, a notorious study that linked the measles, mumps and rubella (MMR) vaccine to autism and digestive disorders, was retracted 12 years after it was published.  Its lead author Dr. Andrew Wakefield was found to have acted unethically in conducting the research by the British entity that oversees doctors.   Medical journal retracts study linking autism to vaccine

As research  indicates that the rates of autism are increasing and that about 1 percent of the children in the United States have the disorder,  there is an increasing body of science looking into causes and contributing factors to the mysterious condition.

Here are some major findings according to Autism Speaks, a leading advocacy and education organization.

1) Two major studies using different methodologies reached similar conclusions: autism is on the rise.  Four years earlier, autism spectrum disorder was found to affect 1 out of 150 children, but more recent data suggest it’s closer to 1 in 91 or 1 in 110 children, depending on the study.  Research also found that autism is four times more common in boys than girls.

Prevalence of parent-reported diagnosis of autism spectrum disorder among children in the US

Prevalence of autism spectrum disorders – autism and developmental disabilities monitoring network

2) Delivering early intervention programs for children with autism improved IQ, language skills and adaptive behavior even for those as young as 18 months.

Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver Model

3) An autism genome study found a genetic variation associated with the genes cadherin 10 and 9, which are responsible for forming nerve connections. This suggests abnormal interactions between neurons may cause the deficits seen in autism.

Common genetic variants on 5p14.1 associate with autism spectrum disorders

4) Researchers analyzed submicroscopic DNA deletions or duplications called copy number variants in the autism genome and found a new cellular pathway called “ubiquitin pathway,” in the pathology of autism.

Autism genome-wide copy number variation reveals ubiquitin and neuronal genes

5) A study demonstrated that combining drug and behavioral treatments were more effective than drug treatment alone for reducing challenging behaviors.

Medication and parent training in children with pervasive developmental disorders and serious behavior problems: Results from a randomized clinical trial

For the complete list and expanded explanation, visit Top 10 Autism Research Achievements

Editor’s Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.

Latest on autism research – Paging Dr. Gupta – CNN.com Blogs.

The Global Assistive Technology Encyclopedia (GATE) is a Wiki, or piece of software that allows users to freely create and edit Web page content using any Web browser. It’s a little bit like Wikipedia, but just concentrating on assistive technology. GATE is very simple to use, with a control panel enabling you to add content and more.

This wiki has been created by AbilityNet, the UK’s largest provider of advice and information on all aspects of Access to technology. The purpose of the wiki is to provide live and up to date information on all aspects of Assistive Technology.

The wiki is moderated and all comments and opinions are those of the individual contributor not necessarily that of AbilityNet.

The wiki is in constant development and we welcome comments, thoughts and contributions.
Anyone who is a registered user can enter information.

via Global Assistive Technology Encyclopedia – Global Assistive Technology Wiki.

Thousands of people with disabilities, their families, caregivers and healthcare professionals are expected to attend this free, three-day expo and conference for a taste of the latest technologies, techniques and tips for improving their physical, technological and social environs.

The following products–many of which are still in development–will impact people of all ages with a wide range of physical, sensory and intellectual disabilities.

– Tongue Drive System TDS: Enables people with high-level spinal cord injuries to maneuver a powered wheelchair or control a mouse-driven computer cursor using simple tongue movements.

– Accessible Wii: Custom-designed Nintendo Wii interface for quadriplegic users. — Cushion Pressure Mapping: Allows for the development of more comfortable and usable wheelchairs by mapping pressure points on seat cushions of various materials.

– Implanted Electrode Technology: Experimental technology which can actually be implanted in the body and, when used with external programmable control units, it can help provide function to paralyzed limbs.

– Auditory Menus and Deaf911 Phone: Exciting demonstrations of experimental technology currently under development for people with visual and manual limitations Auditory Menus and hearing loss Deaf911 Phone.

– Robotics technology: Displays on robots that retrieve and deliver objects using a laser pointer.

– Accessible Bluetooth headset options for people with manual limitations.

– Visit www.abilitiesexpo.com/atlanta/pavillions.html for more.

This unique peek into the future of AT is made possible by the Shepherd Center, NeuroTech Network and Georgia Tech's Center for Assistive Technology and Environmental Access CATEA, Rehabilitation Engineering Research Center for Wireless Technology Wireless RERC and Aware Home Research Initiative. “In addition to providing an exciting forum for people with disabilities to gain knowledge and view products and services, we are thrilled to present the Community with the new Assistive Technology Pavilion,” said David Korse, president and CEO of Abilities Expo. “The forward-thinking scientists and professionals at Georgia Tech and the Shepherd Center are revolutionizing accessibility and, at Abilities Expo Atlanta, attendees will find out how!” Registration for Abilities Expo is free. Preregister for priority access at www.abilitiesexpo.com/atlanta SOURCE Abilities Expo

Kevaleen Lara of Abilities Expo, +1-310-210-3138, klara@shomex.com

via Experience the Future of Assistive Technology at Abilities Expo on November 6-8, 2009 | Reuters.

Technology Assisting the Disabled

Join us tomorrow, November 19th 2009 from 1:30pm to 3:30pm EST at the Greater Ft. Lauderdale Chamber of Commerce conference room for a FREE presentation on this awesome technology.

Georgia Tech researchers believe a magnetic, tongue-powered system could transform a disabled person’s mouth into a virtual computer, teeth into a keyboard – and tongue into the key that manipulates it all!

Presented by Maysam Ghovanloo of the Georgia Institute of Technology in coordination with ARC Broward, Broward Children’s Center, The Wasie Foundation and the Greater Ft. Lauderdale Chamber of Commerce.

For those of you who can not attend this event, I will be broadcasting it LIVE at the times listed above.  You can visit the live stream tomorrow by going to:

http://www.SkipKimpel.com/live/

Remember, this event is FREE and open to the public.  If you do plan on attending the event at the Chamber office, please RSVP to mleachman@arcbroward.com or by calling 954-746-9400.

The Ft. Lauderdale Chamber office is located at 512 NE 3rd Ave, Ft. Lauderdale, FL  33301

Hope to see you there or online!

It also gives you a good idea of the children that we serve at the BCC and the challenges that we have to overcome both medically as well as technologically.

The Gordon Hartman Family Foundation believes that a real need exists to create a special place for special friends . . . to provide an oasis for those needing a safe place to relax and enjoy the outdoors. Millions of children and adults who suffer from cognitive and physical special needs generally do not have access to facilities specifically established to assist them in enjoying outdoor activities.  Currently, less than 10% of those with special needs participate in daily outdoor recreation. The Morgan’s Wonderland story began with a desire to re-imagine the possibilities of what an inclusive park could be . . . if everyone were free to soar. The creation of this new 25 acre special needs park will serve as a haven not only for those with special needs, but also for their families, caregivers and invited friends.

In 2007, Sports Outdoor And Recreation (SOAR) was created as a 501 (c) (3) non profit organization to A) raise the funds necessary to create the park and B) to insure that the park is professionally managed and maintained.  The SOAR Board of Directors chose to develop this one-of-a-kind park on the former site of the Longhorn Quarry in San Antonio, Texas.  To encourage the idea of inclusive recreation where individuals of all abilities can play side by side, Morgan’s Wonderland will be part of a larger 106 acre sports complex that will feature 14 fully lit, tournament quality soccer fields. In an exciting collaboration with SOAR, the North East Independent School District (NEISD) is also building their new 11,000 seat stadium, baseball complex and track & field facilities directly adjacent to the park. The construction of Morgan’s Wonderland and the soccer complex is underway and will be open for fun, friendship and new experiences in early 2010.

The funding for Morgan’s Wonderland began with an initial $1,000,000 donation from Gordon and Maggie Hartman inspired by the love of their daughter Morgan.  The park’s fundraising campaign has been bolstered by financial commitments from the City of San Antonio ($7,250,000), Bexar County ($5,000,000) and the State of Texas ($5,500,000). That total of $17.75 million, along with up to $10 million of additional funds to be raised from local foundations, corporations and individuals, will be used to complete the development of the park.

Upon completion, Morgan’s Wonderland will be the largest park of its kind in the world specifically designed for the recreation and enjoyment of individuals with special needs. Our vision for Morgan’s Wonderland is to play an instrumental role in helping to establish more Ultra Accessible Family Fun Parks throughout the country, thus establishing San Antonio as a national leader in the promotion of family-oriented outdoor activity and fun for these beloved members of our community.  Thank you again for helping us make this dream a reality and for caring enough to make a difference and change lives . . . one special friend at a time.

The mission of Morgan’s Wonderland is to set a new standard for excellence in providing outdoor recreational opportunities for individuals with disabilities. We believe that there is a real need for a special place for special people, one that provides an oasis for people with disabilities, their families and caregivers who need facilities specifically designed to assist them in enjoying outdoor activities.

via Morgan’s Wonderland – The World’s First Ultra Accessible Family Fun Park.

On Tuesday, the chip maker unveiled the Intel Reader, a handheld device for people who struggle to read standard texts because of conditions like dyslexia and blindness. The Intel Reader can scan books and other printed material, turn the text into a digital form and read it aloud. Intel looks to sell the device through resellers like HumanWare and Howard Technology Solutions that cater to the assistive technology and medical technology markets.

In the mainstream computer market, Intel will sometimes make prototypes that show off the power of its chips. The company, however, has resisted bringing such products to market and always steps aside to let its PC-making customers go directly after end users. But, in the health care market, Intel has opted to sell its own gear.

The device costs about $1,500, which may sound pricey for a fixed-function type of computing device. But, as I pointed out in an article in September, many of the text-to-speech products covered by Medicare and health insurance companies start at $5,000 and run up to $10,000. The high cost of such products, along with their limited functions, has resulted in people with a variety of conditions adding cheap text-to-speech software to iPhones and netbooks to create their own assistive devices.

“The direct sales of products is part of our strategy in the health area,” said Ben Foss, the director of access technology in Intel’s Digital Health Group. “These markets are large and going after them is important. We are trying to get economies of scale.”

For Mr. Foss, the Intel Reader arrives with a personal twist. Mr. Foss has dyslexia and went through special education classes in elementary school. In college, Mr. Foss would fax his assignments home so his mother could read them out loud to him on the phone.

“My speech technology was my mom,” he said.

The Intel Reader has a five-megapixel camera that lets people point the device at reading material and capture the text. Software helps align pages correctly and fix things like shadows or curved pages. In addition, Intel is selling a complementary scanning station product that can digitize text and transfer the information over to the Intel Reader.

At its core, the Intel Reader runs on Intel’s own modified version of Linux called Moblin, although general-purpose computing functions have been limited. For example, the computer lacks wireless support. “We didn’t put it in because we didn’t want students surfing the Internet,” Mr. Foss said.

As things stand today, health insurers decline to cover general-purpose computing systems. Instead, they will cover the $5,000 to $10,000 products that can only perform text-to-speech functions. In some cases, people use their health insurance money to buy such text-to-speech devices and then pay about $50 later to “activate” the products and turn them into full-fledged computers.

“The product definitions the government and insurers use are a bit peculiar,” Mr. Foss said.

Interestingly, Mr. Foss said that Great Britain has a more flexible program in place that gives students a 5000-pound grant to buy whatever assistive technology they need before heading to university.

Intel looks to make a variety of devices for the health care market as it tries to find more uses for its chips. The company has been going after products that make it easier for doctors and nurses to pull up digital records along with talking up home health products that can perform certain tests and link patients remotely with their doctors.

Source: NYTimes

A Message from Dr. David Blumenthal, National Coordinator for Health Information Technology

As the many activities mandated by the HITECH Act move forward, I want to take a moment to share my vision of the overarching goal and some of its implications.  Our goal, above all else, is to make care better for patients, and to make it patient-centered.  Information policy and health IT policy should serve that goal.

A key premise: information should follow the patient, and artificial obstacles – technical, business related, bureaucratic – should not get in the way.  As a doctor, I have many times wanted access to data that I knew were buried in the computers or paper records of another health system across town.  Neither my care nor my patients were well served in those instances.  That is what we must get beyond.  That is the goal we will pursue, and it will inform all our policy choices now and going forward.  This means that information exchange must cross institutional and business boundaries.  Because that is what patients need.  Exchange within business groups will not be sufficient – the goal is to have information flow seamlessly and effortlessly to every nook and cranny of our health system, when and where it is needed, just like the blood within our arteries and veins meets our bodies’ vital needs.

If we are to reap the benefit of information exchange, Americans must also be assured that the most advanced technology and proven business practices will be employed to secure the privacy and security of their personal health information, both within and across electronic systems, and that persons and organizations who hold personal health data are trustworthy custodians of the information.  We must have comprehensive, clear, and sustainable policies that strengthen existing protections, fill gaps as they emerge, fortify new opportunities for patients’ access to and control of their information, and align with evolving technologies.  I will devote a separate letter to this critical issue and the many activities mandated by the HITECH Act that we are developing.

On the question of exchange, however, the HITECH Act is pretty specific about eliminating inappropriate barriers.

It squarely tackles the commercial barriers.  The HITECH Act calls for the “development of a nationwide health information technology infrastructure that allows for the electronic use and exchange of information and that…promotes a more effective marketplace, greater competition…[and] increased consumer choice” among other goals.  (Section 3001(b))  This means we cannot support arrangements that restrict the secure, private exchange of information required for patient care across provider or network boundaries.  Some of these arrangements may improve care for those inside their walls.  But ultimately, they have the potential to carve the nation up into disconnected silos of information, and thus, to undermine the vision of a secure, interoperable, nationwide health information infrastructure, which the law requires us to establish.  Consumers, patients and their caretakers should never feel locked into a single health system or exchange arrangement because it does not permit or encourage the sharing of information.

It tackles the economic barriers.  The HITECH Act incentives for providers and hospitals are powerful tools.  While the official definition of “Meaningful Use” won’t be finalized until next year, the HITECH Act specifically highlights “information exchange” as one requirement for the incentives.

It tackles the technical barriers.  The HITECH Act focuses on “interoperability” or “interoperable products.”  In plain English, this means that our policies, programs, and incentives must aim for electronic health record (EHR) software and systems that can share information with different EHRs and networks so that information can follow patients wherever they go.  And to build the pipelines to carry this information, HHS is directed to invest in the infrastructure to “support the nationwide electronic exchange and use of health information …including connecting health information exchanges…”  (Section 3011)  This means we will work with all our partners in the health and IT industries and with organizations that are committed to information sharing to develop the technologies and policies that can help us deliver information securely, privately, and accurately to whomever needs to see it on behalf of the patient’s health.  We must ensure interoperability for the future.

It provides building blocks for information exchange across jurisdictions.  The grants for states and state-designated entities in Section 3013 – which will total $564 million – target information exchange across boundaries, not only within each state but explicitly as part of a nationwide framework.  We will start announcing the awards this winter.  These grantees’ activities must support interoperability that lets patient data follow the patient across political and geographic boundaries.  The grantees will be our partners in building the nationwide infrastructure mentioned previously.

In short, the HITECH Act not only authorizes but requires us to mobilize all our policies, programs, and incentives to give the American people the patient-centric care they deserve and expect.

I look forward to engaging all our partners in this unique opportunity.

Regards,

David Blumenthal, M.D., M.P.P.
National Coordinator for Health Information Technology
U.S. Department of Health & Human Services