Autism BR

The greater autism community of New York State has been working on a new comprehensive autism insurance bill for two years. They gathered supporters and lobbied legislators. They had victory in sight and it all started unraveling before their eyes to become their worst nightmare. New bill less coverage. Michael Smith, Chairman and Northeast Regional Director of the Foundation for Autism Information and Research, Inc. and author of the discarded bill joins me to explain his view that Autism Speaks hired an insurance company lobbyist to replace his bill with one that is harmful to children and is designed to reduce coverage from today’s unsatisfactory levels. Is there something rotten in New York?

As the autism epidemic continues more autism specific insurance laws are being debated in state legislative houses across the nation. No one is more familiar with the intricacies of autism insurance legislation then Lorri Unumb author of the South Carolina Autism Insurance law, which was one of the first autism insurance bills in the nation. Lorri is now senior policy adviser and counsel for Autism Speaks. She joins me to discuss the current bill proposed for New York State and some of the issues related to having autism therapies covered by insurance. We discuss the potentials of the Wellstone-Domenici bill that was passed by Congress and also discuss how I D E A needs to change and fresh ideas about a federal law that could be crafted to be autism specific.

Sally Colletti and Katy Franklin are advocates for children with autism. They are tough and relentless when fighting for the civil rights of those children they help. When helping their own children they have more fears and concerns than parents with typical children. They both join me to talk about some life experience stories, some political musing, and a couple of shots at Autism Speaks. Colletti and Franklin calling it “like it is”.

Raising a child with autism is a constant learning and teaching process. Not only do the parents of a child with autism have to learn from their child, they also have to teach the community how to coexist with their child. Ellen Notbohm has been learning, teaching, and sharing with the autism community since her now 17-year old was identified at age three. Ellen has appeared on the Autism Briefing Room over the past three years and I have enjoyed the visits. In this show Ellen tells us about her new book “1001 Great Ideas for Teaching and Raising Children with Autism and Asperger’s “ a revised and expanded 2nd edition and gives us a peak of what it was in like the olden days of autism treatment 13 years ago as compared to now.

As the Center for Disease Control in Atlanta Georgia places autism incidence in the United States at 1%, anecdotal evidence places the number much higher. As the general population begins to come to grips with the alarming growth in autism prevalence, different strategies are being tested to educate the public on how to work with children with autism and also how to help these children develop. A year ago, Pamela Wolfberg of San Francisco State University was on the Autism Briefing Room and shared with us the news that Autism Speaks had awarded her the 2008 Research Award for Clinical Research for a project using Wolfberg’s Integrated Play Groups™ (IPG) model. That research started first at Fairmont School, San Francisco and later at Grattan School, San Francisco, where it is now in its second semester. Pamela connected up with me via Skype video to update me on the exciting progress of the program at Grattan School and around the world.

With autism reported by the Center for Disease Control to be one percent of our population and anecdotal accounting by teachers of much higher numbers, we need to focus on strategies for early diagnosis and treatment. Lynn Koegel Co-director of the Koegel Autism Research and Training Center of the University of California, Santa Barbara joins me in a Skype video-chat to discuss Pivotal Response Training, which has been described as a “kindlier and gentler ABA”. We also delve into several topics including some exciting new news about very early diagnosis and treatment (six months of age) of children with autism.

Tremendous resources are being spent on finding the cause and cure for autism. As necessary as this is, recent statistics released by the Center for Disease Control declaring that 1% of Americans have autism, clarifies the need to focus on day-to-day strategies for all of us to cope with the disease. Jed Baker is Director of the Social Skills Training Network, a private organization. He also performs a similar function for the Millburn, NJ public schools. He is the author of “No more meltdowns” a guide for working with children. Jed Baker “the practical practitioner”

Pat Howey is a nationally known advocate for extra needs children. She has appeared on Senior Dad shows several times over the past three years. In this video check-in we catch up on our lives and discuss Response to Intervention (RTI) and is it being used improperly to delay treatment of extra needs students. Abuse or ignorance? That is the question.

The state of special education. This report covers special education , due process, inclusion, parent communities, and trust. Colin Ong-Dean, researcher and author of Distinguishing Disability: Parents, Privilege, and Special Education, has investigated special education and due process. Two of our panelists have children in special education. Both have fought to get the services their children justly deserved. Katy Franklin has not engaged in litigation but she effectively points out her child’s legal rights. Robin Hansen has fought the system through due process hearings and eventually won the services her children needed. This report gives you real-life instances of the conditions within our schools and special education. Some of it will make you laugh, some of it will get you angry, and some of it will make you cry. But this is a day-to-day situation of over 5,000 families every day in San Francisco, and millions around the country.

We first heard Katy Franklin’s story about her son Alex’s autism two years ago. We learned about his diagnosis and the issues that developed for him and the issues Katy encountered with “the system” while advocating for her son. Now we have a two year check-in. Alex has completed the third grade and Katy has encountered a few more hassles with the School District. We hear what this nationally known advocate for special needs children has experienced in “ The sun will shine brighter.”

How does someone become the mother to two children with autism? If you are Felicia Burk, you adopt them. Felicia has long been an outspoken advocate against restraint and isolation of children with autism, long before her son we restrained and removed from school by the police in handcuffs. For many years she has been a Behavior Analyst, at times working for the very school system that abused her child. This healthcare professional believes that her firm but gentle approach that she advocated to parents throughout her professional life is being effective in maximizing her children’s potential. Felicia shares with us the joys and the frustrations of teaching children with many severe issues how to cope with life. Felicia Burk- Wings and pedestal optional.

What is adaptive technology? In every individualized-education-plan (IEP) meeting the question must be asked, “Can this child benefit from an adaptive technology?” What are these technologies and how can they be used to help students learn? Gayl Bowser is an expert in adaptive technology. She has been working in the field for over 20 years and was coordinator at the Oregon Technology Access program. Gayl joins me to discuss adaptive technology and make me aware of its uses and its limitations in today's modern world. Interestingly, over 70% of all IEP’s have goals that involve writing. Gayl heads Assistive Technology Collaborations, a consulting firm. Gayl Bowser, can technology help?

The new chairperson of the Citizens Advisory Council for Special Education of the San Francisco Unified School District panders to none. Robin Hansen is an online columnist for the San Francisco Examiner and has revealed situations where the School District is not following the law. Robin joins me and we discuss what, if anything, is changing for special education in our schools and what progress schools are making towards giving civil rights to all students in the system. How typical kids are benefiting from special education funding, how money is going down the drain and what is really going on in Oz. Robin Hansen- Naming names and speaking out.

Pamela Wolfberg of San Francisco State joins me to share some exciting news. Pamela is an internationally know expert on integrated peer play groups for children with autism. I interviewed Pamela in February 2007 (2007 interview) . Autism Speaks has awarded Pamela the ‘2008 Treatment Award for Clinical Research’.  The award enables three years of research about the benefits of integrated peer-play groups at after-school programs.  Autism Speaks, who historically has been funding research in the causes of autism, now has funded this clinical research that is directed at treatment and building life-long community patterns. I wrote about my daughter's experience while visiting an integrated play facility in April 2007, one of Pamela’s earlier successes (stan’s story). This is a very important step in addressing the Autism epidemic and I applaud Autism Speaks for taking this important step. Good move Autism Speaks!

Patrick Henry Hughes was born enabled. His father, Patrick John, relates that when Patrick was four months old, the sound of the piano soothed the child, and by the time Patrick Henry was a-one-year old he was playing tunes on the piano. In the ensuing years Patrick Henry learned to play the trumpet and developed his voice. When Patrick applied to college he wanted to be in the pep band. The band director said ‘no problem’, however, all pep band members were also members of the marching band. This was somewhat of an obstacle for Patrick since he was born without eyes and had a muscle disease that made him wheelchair-bound. His father said that he’d be willing to move Patrick around in the formations. And so what is extraordinary for some is normal for this family. We talk to the two Patrick’s and hear about their new book, I Am Potential. Listening to the optimism of the Hughes family, where Patrick is the oldest of three boys, I can’t help but feel the strength and devotion of Patrick Henry’s parents. Eight lessons on living, loving, and reaching your dreams.