Autism Speaks No Longer Seeking Cure

by Michelle Diament | DisabilityScoop

For the first time, the nation’s largest autism advocacy organization has revamped its agenda and one notable objective is no more.

Autism Speaks’ board of directors voted in late September to modify the organization’s mission statement, marking the first such change since the nonprofit was established in 2005.

The new iteration is shorter and strikes a markedly different tone. Gone are terms like “struggle,” “hardship” and “crisis.” Also absent is any mention of seeking a cure for the developmental disorder.

“Our mission statement was updated to reflect the evolving strategic direction of Autism Speaks and current needs in the autism community,” C.J. Volpe, the group’s spokesman, tells Disability Scoop.

Previously, Autism Speaks spoke of unifying the autism community to address what it called an “urgent global health crisis.”

“We are dedicated to funding global biomedical research into the causes, prevention, treatments and a possible cure for autism. We strive to raise public awareness about autism and its effects on individuals, families and society: and we work to bring hope to all who deal with the hardships of this disorder,” the old statement indicated.

The new version, which the nonprofit says has been in the works since at least late last year, takes a decidedly different tack.

“Autism Speaks is dedicated to promoting solutions, across the spectrum and throughout the lifespan, for the needs of individuals with autism and their families through advocacy and support; increasing understanding and acceptance of autism spectrum disorder; and advancing research into causes and better interventions for autism spectrum disorder and related conditions,” reads the update. “Autism Speaks enhances lives today and is accelerating a spectrum of solutions for tomorrow.”

The approval of a revamped mission statement caps a year in which the nonprofit saw significant leadership turnover, bringing on a new president, saying goodbye to its chief science officer and the death of co-founder Suzanne Wright this summer.

Stephen Mark Shore, a member of the Autism Speaks board, said the revision reflects a broader shift for the nonprofit.

Autism Speaks was established more than a decade ago in part by merging with existing advocacy groups including one known as Cure Autism Now. For years, critics blasted Autism Speaks for lacking representation from people with autism themselves. But last year the group invited Shore and Valerie Paradiz, who are both on the spectrum, to join its board.

“Autism Speaks was founded on the goal of curing autism as one of its objectives,” Shore said. “However, similar to many experiences of parents of children with autism, the organization grew to believe that autism is something to be worked with for promoting fulfilling and productive lives of people on the spectrum — rather than something that has to be done to.”

Nonetheless, the change in thinking may be too little, too late for some.

Members of the science board within Autism Speaks asked the nonprofit’s top leaders to drop the cure language from its mission statement back in 2011, but were rebuffed, according to John Elder Robison, who has autism and served on the organization’s science and treatment boards before resigning in 2013.

“The response I got from the executive board was that the executive board is controlled by (co-founders) Mr. and Mrs. Wright and they are not ready to hear that yet,” Robison told Disability Scoop.

“While I think it’s a good step, it’a step that was asked of them five years ago and I think they need to do a lot more,” he said. “Those are the words, but who directs the action?”

Join us for NBRC’s Open House – October 25th

North Bay Regional Center has recently moved to our new office space at 610 Airpark Road in Napa.

This office will be the new administrative headquarters for services to the almost 9,000 children and adults with developmental disabilities in Sonoma, Solano and Napa counties. This location houses over 140 employees dedicated to ensuring the highest quality services possible are provided to clients and their families. State-of-the-art technology and comfortable meeting space will make it a place that is warm and welcoming for both NBRC clients, families and for hard-working staff.

Join us for light refreshments and tours will be provided through the new space. There will also be a special presentation by state and local elected officials celebrating and commemorating the 50th anniversary of the Lanterman Developmental Disabilities Services Act, the civil rights legislation that gives NBRC the privilege and pleasure of serving people with different abilities in California.

Please RSVP to this event so we can know you will be attending by clicking here.

Self Determination Program – Financial Management Services Presentations

The Self Determination Program option is getting closer to receiving final approval from CMS. In preparation for this, outreach has been happening in the North Bay Regional Center catchment area to provide interested clients and families more information about the program and about the Financial Management requirements.

Financial Management Services help participants manage their individual budgets by paying bills and managing the payroll for support workers. Join Joe Hernandez from Premier Healthcare Service, with Lisa Hooks from the State Council on Developmental Disabilities and January Crane from NBRC  for this important presentation  on Monday, Oct 17th 6:30-8:30 pm in Fairfield,  Tuesday, Oct 25th, from 6-8pm in Santa Rosa, and Tuesday, November 8th in Vacaville.

Information about the Fairfield presentation: cnp_sdp_fms_training_flyer

Information about the Santa Rosa presentation: bi_sdp_fms_training_flyer

Information about the Vacaville presentation: vacaville_sdp_fms_training_flyer

Can We Conquer All Diseases By The End Of The Century?

From California HealthLine

The goal is lofty and expansive: to cure, prevent or manage all known diseases by the end of the century.

Facebook Chief Executive Officer Mark Zuckerberg and his wife, pediatrician Priscilla Chan, announced last month that they planned to invest $3 billion over 10 years to begin tackling everything from Alzheimer’s disease to the Zika virus.

Read more… 

President Obama Issues Proclamation – National Disability Employment Awareness Month, 2016

“Americans with disabilities are entitled to the same rights and freedoms as any other citizen — including the right to dignity and respect in the workplace.”  President Barack Obama

This weekend, President Obama issued a proclamation designating October 2016 as National Disability Employment Awareness Month.

You can read the proclamation in its entirety at the White House Press Office website.

DDS Extends Deadline For Regional Center Providers to Submit HCBS Transition Funding Proposals

On August 3, 2016, the Department sent  information regarding the process for requesting funding to assist providers in making changes to meet the federal Home and Community-Based Services (HCBS) settings requirements.  To allow more time for the development and completion of these proposals, the Department is extending the deadline, until October 30, 2016, for service providers to submit proposals to regional centers.  The Department will update its website with this revised timeline:

http://www.dds.ca.gov/HCBS/

All proposals for NBRC vendors need to be sent attn: Maura McDonough at Mauram@nbrc.net

 

NBRC Town Hall Meeting to Address Purchase of Service Disparity

Join NBRC for a Town Hall Meeting at ParentsCAN in Napa. We realize cultural and language barriers may impact your ability to access and utilize services- we would like public comment on our proposal for additional funding to address these disparities.   Join us October 7th or 10th.

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Flyer in English: town-hall-meeting-flyer

Flyer in Spanish: spanish-town-hall-meeting-flyer