Category Archives: DIRFloortime

SB57 is on Governor Herbert’s Desk. Change is good.

sb57profile2The State of Utah’s heart grew three sizes today.  SB57 has survived each hurdle of the legislative process and now sits on the desk of Utah’s Governor.  A child who is diagnosed today will have to wait until 2016 for the mandate to take effect, but never the less, that child will have access to life changing therapies paid for by insurance.  Thank you to the Utah Autism Coalition and it’s leadership over the past 6 years and for anyone and everyone who created a “tiny ripple of hope” throughout this process for individuals affected by autism and their families.  Thank you to legislators in the Utah Senate and House, who listened thoughtfully  and allowed a greater understanding of the issue to impact decision making.  YOU DID THE RIGHT THING HERE.  A GOOD THING.

 “Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other from a million different centers of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.”

– Robert F. Kennedy

 

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For Such a Time as This

HB57_2013

We have remained somewhat silent in the fight for SB57, the bill introduced by Senator Brian E. Shiozawa to require insurance coverage for assessment, intervention, and treatment of autism spectrum disorders. Indeed, as have many others, we have become increasingly disenchanted with the national organization that seems to be loudest voice in the room, drowning out diverse ideas; wielding it’s power to drive specific treatments/ research objectives, and encouraging people to walk around in circles (literally) raising money from folks in the trenches to pay for a lot of expensive and highly compensated bureaucracy.

The drumbeat of advocacy for BCBA autism treatment coverage in Utah has been pounding away for nearly 5 years and in that time, autism advocates have earned some ground, (Utah Medicaid Waiver for ABA)  but not enough to even touch the growing need for interventions and support services in a state where the autism prevalence rate is 1:47 children, 1:24 boys.  Further, ABA is not right for every child. Families need to be given choices about which treatment modalities will be implemented, as the intervention will be powerfully shaping the child’s formation of relationships, learning style and character.  Our children, Madeline and Caleb made profound progress in relating and communicating through participation in The Play Project, a program being utilized by Baby Watch Early Intervention at Utah State University, Center for Persons with Disabilities.  “Developed by Dr. Solomon, P.L.A.Y. is a practical, family-friendly application of renowned child psychiatrist Dr. Stanley Greenspan’s Developmental, Individual-differences, Relationship-based (DIR) framework, popularly known as Floortime. Through structured monthly home visits focused on modeling, coaching and video feedback, consultants train parents to engage their child with autism in ways that promote emotional connection and communication. By training parents to participate in their child’s intervention, the program also promises to be cost-effective. The P.L.A.Y. Project costs under $4,000 per year, in comparison with other interventions that cost $40,000 to $60,000 per year.”  

It changed the outcome of our children’s future – anecdotal to be sure, but no less real for them and for us.  Read the results of the Play Project Pilot study here and further research support for play-based therapy here.

It has come to our attention that a recent amendment has been passed to open the treatment modalities to be covered by insurance as long as as that person has the appropriate credentials for service provision.   The HERO amendment looks like this:

45          (ii) provided or supervised by a

             46          (A) board certified behavior analyst; or

             47          (B) licensed psychologist so long as the services performed are commensurate with the
48      psychologist’s formal university training and supervised experience.  
 }

  person licensed under Title 58, Division of Occupational and Professional Licensing, whose scope of practice includes mental health services.       

 

We believe DIRFloortime and other developmental interventions should be financially accessible to all families in Utah. We applaud those responsible for this MONUMENTAL change and are ready to ask everyone we know to support SB57… for such a time as this.

 

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Premier of Respecting Autism Radio Show

 

How cool that we got to do this!  Here’s the link to the inaugural Respecting Autism Radio Show on The Coffee Klatch, Blog Talk Radio.  A very special thank you to Dr. Gil Tippy and Marianne Russo.  Click the logo to hear the broadcast.

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The Respecting Autism Radio Show

We get to be the first guests on The Respecting Autism Radio Show with Dr. Gil Tippy.  Gil Tippy, PsyD, is the Clinical Director of the Rebecca School in Manhattan. As one of the founders of the school, he has been responsible for evaluating over 300 children, and has been central in creating both the academic and clinical programs. He creates the training for the entire staff, and consults on their interventions with the children in the school. He was directly supervised by Dr. Stanley Greenspan, creator of the Developmental, Individual difference, Relationship-based (DIR®) model and is one of our personal heroes.  His super power is bringing people into authentic relationships, and seeing the best in each individual he encounters.  If you have not read his book, Respecting Autism, please pick it up and at least read the introduction. Dr. Tippy lays out the argument for a developmental/relationship based approach to autism intervention and treatment.  The implications are profound. We are recording tomorrow night and it will air this Sunday, December 8th, at 9:00 pm  Eastern Time, on the Coffee Klatch Special Needs Radio Network.  Just in the nick of time, Dr. Tippy’s Facing Autism portrait is done!

 

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Summer 2013: NYC Trip

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At the end of July, I traveled to NYC to meet with several individuals and families I’d been wanting to photograph for quite some time. It was a monumental challenge to figure out how to get around the city with all of the necessary gear, but with a bit of help from friends familiar with New York, some creative packing, and a local photo assistant Sam Dole, I managed to get myself and the gear I needed to each location.  I stayed at Pod 39, a trendy, but closet sized hotel room at 145 E 39th St.  I tried authentic New York style pizza.  It was good, but Chicago pie will forever have my heart.  I am especially grateful to Eric Taubman and Geoffrey Berliner of the Center for Alternative Photography for their hospitality and use of the Center’s roof for shooting.

I met Dr. Gil Tippy first at the Rebecca School in Manhattan.  Dr. Tippy is the Director of the Rebecca School, a therapeutic day school promoting the education and development of children with neurodevelopmental disorders of relating and communicating.  Dr. Tippy recently co-authored a book with the late Dr. Stanley Greenspan titled, Respecting Autism, and is a passionate advocate for developmental, relationship based approaches to the intervention and treatment of autism.  The classic reluctant hero/martyr blend, Dr. Tippy challenges the notion that Applied Behavior Analysis is the right way to overcome core deficits in relating and communicating, and he provides leadership for the growing movement of educators, clinicians, and parents dedicated to engaging children with autism using their natural emotions and interests to build higher levels of social, emotional, and intellectual capacities.  I also had the opportunity to meet several amazing families whose children attend Rebecca School.  These portraits are still in post-production and when completed will be added to the Facing Autism project.

Later that day, I traveled north of Central Park to meet Anthony Di Salvo, The Founder and Executive Director of Sprout Inc. Sprout is a non-profit organization that provides innovative programs for adults with developmental disabilities.  The Sprout Film Festival, an annual film festival featuring work created by people with disabilities, reinforces accurate portrayals of people with developmental disabilities and exposed the general public to important issues facing this population.  Anthony Di Salvo is using film to breakdown stereotypes, and promote a greater acceptance of differences.  Check out Di Salvo’s film One Question.

The following day, Sam and I took the subway to Coney Island to visit Steven St. Bernard, a NYC transit bus driver responsible for catching a seven year old child with autism who had climbed out a window, teetered on the air conditioner before plunging 3 stories into his arms.  The story of his heroism was reported widely throughout the media, and though he caught that child at sacrifice to his own body, he has been known to shrug off attention with the retort, “a hero is a sandwich.”  After meeting with him, it became clear that this one decision made in a crucial moment was not the only thing that made him noteworthy.   He is also known for being a surrogate grandfather to many in his community and has been scrounging up parts to build bicycles for the neighborhood children for years.

Dashing back to Manhattan, we met with Alicia Hansen on the roof of the Center for Alternative Photography, which is, coincidentally right next door to Rebecca School. (small world, eh.) Alicia Hansen is the Founder and President of NYC SALT, a nonprofit photography program inspired by the photographer Zana Briski‘s documentary film, Born Into Brothels,  NYC SALT’s mission is to engage, inspire and empower New York City teenagers by providing them with professional visual communication skills.

The trip was a crazy whirlwind, but truly unforgettable.

 

 

 

 

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