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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?”

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

CA Treasurer John Chiang convenes CalABLE Advisory Council

In California, some people living with disabilities and their families rely on a variety of public benefits provided by state and federal governments to make ends meet. They include Supplemental Security Income (SSI), Medicaid, CalFresh, and other state health insurance programs.

These programs provide critically important services to the disabled but often do not allow individuals to save more than a total of $2,000, or earn more than $680 a month.

These restrictions are a disincentive for people with disabilities and their families to save for long-term needs, leaving them vulnerable to changes in health, living arrangements, unexpected emergencies, or simply the explosive growth in the cost of disabled care.

During the 2015-2016 Legislative Session, Senator Fran Pavley of Agoura Hills and Assemblymember Jacqui Irwin of Thousand Oaks co-authored and passed two bills, Senate Bill (SB) 324 and Assembly Bill (AB) 449, that will help ease financial challenges faced daily by people with disabilities. The new laws give Californians access to the federally recognized 529A – ABLE accounts.

An ABLE account is a tax-advantaged savings account that can be established for the benefit of qualified individuals with disabilities. Contributions to the account, currently limited to $14,000 per year, can be made by family, friends, or the beneficiary themselves. The account’s earnings are allowed to accumulate tax-free, and the withdrawals, provided they are applied to qualifying disability expenses, are tax-free. One of the biggest benefits of the ABLE account is that the savings held in the account, up to a current $100,000 limit, is not counted against the $2,000 limit on personal assets for individuals to qualify for public benefits.

The ABLE program, once operational, will open up life-improving opportunities for California’s disabled and their families in much the same way ScholarShare 529 plans opened educational opportunities to California’s students. The treasurer’s office has administered the ScholarShare savings program for the past 16 years.

For more information about CalABLE and Advisory Council meetings, visit the CalABLE page on the Treasurer’s website.

Contract Compliance Community Resource Developer

POSITION

Position reviews, monitors, implements, negotiates and renews NBRC vendor contracts, related to NBRC’s Community Placement Plan.  Tracks contract timelines and implementation to ensure compliance.  Works with leadership and legal to draft contract language for new service models.  Serves as point of contact for Resource Development Department for contract implementation.   Monitors and tracks key program/project performance metrics.  Must be able to quickly process and analyze information and be able to use said analysis to make decisions and solve problems.

MINIMUM EDUCATION AND EXPERIENCE

Completion of a Master’s Degree in public administration, communications, business administration, health administration, non-profit administration, project management or a related field.  Two years’ experience after graduation in a field of contract compliance including some experience in the area of community organization, project planning or program evaluation.

-OR-

Two years experience as a Service Coordinator at North Bay Regional Center and experience in either community organization, project planning, or program evaluation.

A Baccalaureate Degree in a related field and four years experience in the above areas may substitute for a Master’s Degree.

Experience prior to Master’s or Baccalaureate Degrees will be considered on a case-by-case basis.

SPECIAL REQUIREMENTS

Possession of a valid driver’s license, and minimum legal automobile liability insurance, or access to another form of reliable transportation.

Benefits:
We offer our employees an all-inclusive compensation and benefits plan, including:
• Medical and Dental Insurance
• Life Insurance and Long Term Disability
• Retirement plan – CalPERS
• Vacation Time and Sick Leave
• Training and Orientation
• Paid Holidays

Salary Range:

$53,796– $72,120 with opportunities for 5% increases annually.

Company Overview

At North Bay Regional Center we believe that all people with developmental disabilities should have the same opportunities as are available to all other citizens. As one of the 21 nonprofit Regional Centers throughout California, we offer a comprehensive program supporting the needs of our communities, provided by driven and passionate employees who ensure that we achieve our goals daily.

 

Autism can be Asset in Workplace

As the population of people diagnosed with autism spectrum disorder keeps growing, so does the number of people with that diagnosis who aren’t finding employment.

Though many young adults on the spectrum are considered high functioning, recent research shows 40 percent don’t find work — a higher jobless rate than people with other developmental disabilities experience. Read More.

Target Offering Carts For Shoppers With Special Needs

Retail-giant Target plans to make a special cart available at nearly all of its stores that alleviates the need for caregivers to simultaneously push a cart and a wheelchair while shopping. (Thinkstock)

Brian Britz’s 2-year-old daughter cannot sit in a regular shopping cart because of health issues and developmental delays. That means shopping is a family affair with one parent pushing the medical stroller while the other pushes the shopping cart. To alleviate the difficulties that parents like his face, Target said that by March 15 the majority of stores will have at least one Caroline’s Cart. Read more.

The Future of Foster Care of CA

Group homes, which lack the kind of nurturing parental relationships thought to be developmentally necessary for healthy children, have historically been a last resort for foster kids. But a family placement does not guarantee a happy child; as Natasha Vargas-Cooper reported for Pacific Standard in the 2013 September/October issue, foster children typically bounce between at least three family placements, and often as many as 10 or 12 different homes. Read more.