California Legislation: Self-Determination

At California's State Capitol in Sacramento, advocates for the disabled rallied for a legislative agenda including restoration of state budget cuts.  At the Sacramento Bee, Jim Sanders reports:

To kick off the event, speakers exhorted hundreds of participants gathered near the Capitol's west steps to chant, "We're here, we're loud, we're disabled and we're proud."

"They certainly hear us, but that doesn't always mean they make the decisions we want them to make," Teresa Favuzzi, director of the California Foundation For Independent Living Centers, said of lawmakers who are weighing a revised state budget proposal unveiled by Gov. Jerry Brown this month.

The 10th annual "Disability Capitol Action Day" hoped to attract 3,000 people. Lobbying inside the Capitol was planned after the speeches and sign-waving ended. Sponsors included more than a dozen labor union, disability rights and retail groups

The article lists a variety of bills affecting Californians with disabilities, including SB 468.  From The Autism Society of Los Angeles:

The Autism Society of Los Angeles along with Disabilities Rights California are sponsoring
California Senate Bill No. 468: Self-Determination Program for Individuals with Developmental Disabilities

Click here to view the content of Senate Bill No. 468. Use this link to determine your State Senate and Assembly representatives.

Introduced and supported by Senators Emmerson and Beall, this bill would allow individuals with developmental disabilities (with the support of family, friends, and professionals) to take charge of their future by gaining control over the services, supports and resources they need to reach their life goals. Learn more.

What is self-determination?

Self-determination provides an alternative to the traditional method of providing regional center services to consumers.

Self-determination helps individuals with developmental disabilities gain a life that:

• Respects their own choices and fulfills their hopes and dreams.
• Fosters independence while encouraging interdependence.
• Allows them to choose services and supports that are not bound by what is currently available.
• Reaches farther than meeting basic needs and toward creating a meaningful life.
• Has services and supports based on their changing needs.
• Is not unique to individuals with disabilities.

Has California ever had a self-determination program?

Yes. In 1998, the California Legislature (SB 1038) amended the Lanterman Act to include a Self-Determination Pilot Project. The highly successful program was piloted in five regional centers across California and included 200 participants. The program continues to exist for the original pilot participants as long as they choose self-determination. This legislation will offer the self-determination program to consumers throughout the state.

The Society has a call to action:

Urgent action needed:

The Autism Society of Los Angeles is the sponsor of SB 468 on Self Determination. This bill, if passed, will allow clients of the Regional Centers the ability to choose their own services and support.

Currently the bill is stuck in appropriations, and the only way to get it out of the Suspense file is for people to make phone calls TODAY!!!

Please call Darrell Steinberg's office at (916) 651-4006

If we can generate enough calls the committee can decide to take it out of suspense. If this does not happen today the bill will die. This bill if passed will have significant impact on families and adults with autism.

Call Senator Steinberg today! (916) 651-4006.

For more information on SB 468, click here: SB 468 FAQ's

Bryce's Law in Missouri

After eight years, a Missouri state legislator has secured passage of his autism legislation.  Missourinet reports:

Representative Dwight Scharnhorst (R-St. Louis) named Bryce’s Law for his grandson, who died in 2007 of complications related to autism and epilepsy. It would create a grant program that parents of children with an autism spectrum disorder, Down syndrome, Angelman syndrome or cerebral palsy could apply for to help cover the cost of specialized educations that meet their unique needs.

“It’s somewhat of a mandate to the Department of Elementary and Secondary Education to seek and secure federal and state, and I will be seeking on my own private foundation money, to form a pool of money for parents who decide they want to move these children out of a public school and put them in the institutions that could probably best suit improving their quality of life as well as their family.”

The bill had met resistance in earlier versions because it would have created a tax credit program for those parents, which opponents had likened to school vouchers. Scharnhorst says converting it to a grant program removed any impact it would have on state funding for public schools. He says prior to this year, the proposal had not received a positive vote in a legislative chamber.

Two years ago, Scharnhorst spoke about Bryce and an earlier version of his bill:

Autism and The Media: Two Studies

Graham N. Dixon and Christopher E. Clarke, "Heightening Uncertainty Around Certain Science:Media Coverage, False Balance, and the Autism-Vaccine Controversy," Science Communication 35 (June 2013):   358-382.

The abstract:

To investigate how balanced presentations of the autism-vaccine controversy influence judgments of vaccine risk, we randomly assigned 327 participants to news articles that presented balanced claims both for and against an autism-vaccine link, antilink claims only, prolink claims only, or unrelated information. Readers in the balanced condition were less certain that vaccines did not cause autism and more likely to believe experts were divided on the issue. The relationship between exposure to balanced coverage and certainty was mediated by the belief that medical experts are divided about a potential autism-vaccine link. We discuss theoretical and practical implications of these findings.

The conclusion:

Despite the limitations and need for further research, this study demonstrates that the ways in which journalists present evidence in support of risk viewpoints can influence peoples’ risk-related certainty. Falsely balancing risk perspectives can be troubling, as it can heighten readers’ uncertainty perceptions around certain science. For health officials, this fact can be another obstacle to effectively communicating health risk to the public for which alternative methods of communication should be considered. For journalists, it might open up important discussions on the balance norm in terms of addressing its advantages and disadvantages in providing the public with health risk information.

Brooke Weberling McKeever, "News Framing of Autism: Understanding Media Advocacy and the Combating Autism Act," Science Communication 35  (April 2013): 213-240.

The abstract:

This study explores agenda setting, framing, and the concepts of media advocacy and mobilizing information through content analysis of The New York Times and The Washington Post news coverage of autism from 1996 to 2006, the year the Combating Autism Act was passed. Findings revealed that science frames decreased over time, while policy frames increased. Medical, government, family, and nonprofit sources were most common in news coverage. Solutions were mentioned more frequently than causes; however, mobilizing information was limited. Theoretical implications and practical applications are discussed.

From the conclusion:

The sources included in autism news coverage seem appropriate when one considers the issue.  Science/medical and government sources are often deemed “experts” by the media and are therefore sought after for inclusion in health news. Sources that provide information freely and/or frequently in a format that audiences might find easily digestible are especially likely to be included in media coverage about scientific topics (Conrad, 1999; Len-Ríos et al., 2009; Tanner & Friedman, 2011). Additionally, many families were included as sources in news coverage of autism. As Boyce (2006) noted, families could be considered the real “experts” when it comes to an issue such as autism, and it seems that at least some U.S. newspaper reporters saw them as such and included them in coverage accordingly. However, individuals with autism, who could also be considered experts, were included in only 14% of articles; these are some of the “ordinary voices” that Boyce (2006) noted seem to be missing in autism news coverage. While nonprofit organizations were included in a fairly substantial proportion of articles (35%), they made up only 11% of total sources. This could reflect the limited number of autism nonprofits that existed or made themselves known to media at the time, which could be evidence of the need or opportunity for greater media advocacy efforts on the part of nonprofit organizations. Alternatively, there could be reluctance on the part of journalists to rely on nonprofit organizations as sources for an issue such as autism. The spike in nonprofit sources included in news coverage in 1998-1999 coincides with media coverage of the Wakefield et al. (1998) study and controversy surrounding the autismvaccine link. It could be that nonprofit organizations became more willing to speak with media during this time, while government and science/medical responses may have been lacking as the controversy emerged and was sorted out, as one recent article suggested (Holton et al., 2012).

 Boyce, T. (2006). Journalism and expertise. Journalism Studies, 7, 889-906.

Holton, A., Weberling, B., Clarke, C. E., & Smith, M. J. (2012). The blame frame: Media attribution of culpability about the MMR-autism vaccination scare. Health Communication. Advance online publication. 

Texas Lifts Age Cap

From Autism Speaks:

The Texas House of Representatives approved and sent Gov. Rick Perry a bill that would eliminate age caps for receiving autism insurance benefits. Perry signed the 2007 bill that made Texas just the third state nationally to enact autism insurance reform, then a second bill in 2009 that raised the age cap from 5 to 9.

The current law requires state-regulated health plans to cover the diagnosis and treatment of autism, including behavioral health treatment, such as Applied Behavior Analysis (ABA), as well as speech, occupational and physical therapy.

Sponsored by Senators Kirk Watson of Austin, Wendy Davis of Forth Worth and Eddie Lucio, Jr. of Brownsville, SB.1484 would take effect in September and limit annual ABA benefits to $36,000 for children aged 10 and above. Children must be diagnosed with autism by the age of 10 to gain the coverage.

The House champions for the bill included Rep. Larry Gonzales of Round Rock, Rep. Ron Simmons of Carrollton, and Rep. Senfronia Thompson of Houston.

Texas is one of four states with existing autism insurance reform laws that has considered bills to expand coverage this year. A fifth state, New Mexico, has already enacted a new law expanding its coverage to public employees. Last year, Louisana, Vermont, Virginia and Rhode Island all took action to expand coverage under their existing laws.

The Minnesota Legislature has sent Gov. Mark Dayton a bill that would make Minnesota the 33rd state to enact autism insurance reform. Dayton is expected to sign the bill shortly.

A Housing Problem

In Lake Charles, Louisiana, KPLC reports on the housing problems of ASD adults:


KPLC 7 News, Lake Charles, Louisiana

Ads Aiming at Hispanic and African American Parents

The New York Times reports:

AUTISM Speaks, the autism and science advocacy organization, this week is introducing a new public service advertising campaign aimed at Hispanic and African-American parents.

An ad in the campaign showing parents observing a child with the early warning signs of autism, a developmental disorder.

The campaign, developed with the Advertising Council, which has worked with Autism Speaks since 2005, was created by the New York office of BBDO and LatinWorks of Austin, Tex., both part of the Omnicom Group. The campaign describes early signs of autism in detail and encourages parents to take immediate action if their child does not meet standard developmental milestones.

The new campaign is geared specifically at Hispanic and African-American parents because, according to the Centers for Disease Control and Prevention, the current age of diagnosis among these groups, as well as among low-income families, is higher than that of the general public. According to the C.D.C., although the average age now of diagnosis in the United States is 4 to 5 years, a reliable diagnosis can be made as early as 18 to 24 months. And if the disorder is treated from the ages of 3 to 5, from 20 percent to 50 percent of children with autism will be able to attend mainstream kindergarten, according to studies by The Journal of Consulting and Clinical Psychology and The Journal of Autism and Developmental Disorders.

More on DSM-5

DSM-5 is now in effect. At The Huffington Post, Catherine Pearson writes:

Geraldine Dawson, chief science officer of the nonprofit Autism Speaks, said the move to drop Asperger's as a separate disorder will be felt mostly by parents seeking a first-time diagnosis for their son or daughter.

"There is no reason to re-diagnose a child who already has a diagnosis of an autism spectrum disorder, such as autism or Asperger's syndrome," Dawson told HuffPost. "That child will continue to qualify for an autism spectrum disorder."
...

"I think these changes will really come into play more [for parents] once an electronic medical record requires a specific diagnosis, or if payers require it," said Dr. Matthew Perkins, medical director with the New York State Office of Mental Health's Division of Children and Family Services. Dagnostic changes can be slow to trickle down to all health care providers, particularly because many physicians stick largely to what they initially learned in training, he added.

"Parents should ask about and be aware of their child's particular diagnosis, especially if it will impact insurance reimbursement for services, or determine the eligibility for special education services at school," Meyers echoed.