California Autism Commission Prepares Legislation for 2008; Recommendations Cover Health Insurance, Education, Services, Awareness, Diagnosis

The California Legislative Blue Ribbon Commission on Autism has published a report with recommendations for legislative action in 2008. The commission's 93-page report (a PDF file), presented in September to Gov. Arnold Schwarzenegger and the state Assembly, issues findings about Californians with autism spectrum disorders, describes the presence of autism services in the state and makes recommendations in seven areas, from early intervention to post-secondary education, from health insurance to teacher training, for addressing what it calls "the ASD public health crisis."

This is a big deal for parents and families beyond the state capital in Sacramento; I would expect advocates for autism services across the country to follow closely what happens in this effort, and to glean both insights and lessons from the recommendations and resulting changes to autism services in California. Autism Bulletin readers are a busy group, but if it's possible for you, reading the commission's report is a good use of time to familiarize yourself with issues and challenges families need to address as they support people with autism and advocate for them. It's a quick education in how a big state looks at the autism issue, how it organizes to address autism needs, and how it frames approaches to important issues like health insurance and education.

Convened for two years after a 2005 state resolution, the panel's report notes that it has sought and won legislative approval to remain active for another year, until November 2008, so it can monitor the progress of work on its recommendations.

The Commission's Seven Recommendations: What They Cover

As in other states (such as Washington and Kentucky) that have formed important autism study groups, the California panel takes a comprehensive approach to providing support services to a growing number of citizens diagnosed with autism. (The California report also asserts the relative strength of services and research institutions compared to other states in the U.S.) The panel's recommendations call on California to:

1. Expand early diagnosis and intervention. The panel calls for establishing a demonstration project to serve as a model for expanding the state's ability to identify autism cases early. "the demonstration project should focus on distressed communities; ensure the timely diagnosis of and intervention for children with ASD; improve collaboration among providers; provide support to families and caregivers; establish a seamless system for service delivery between regional centers and local education agencies; and promote smooth transitions" from birth to kindergarten.

2. Enact health insurance legislation. The panel calls on the state to pass laws, regulations "and other policies to ensure appropriate and equitable coverage for ASD by private health plans and insurers."

3. Establish a muscular public awareness campaign. The panel calls on California to "implement a statewide public awareness campaign on ASD" tied to efforts by the state's Department of Public Health to improve access to autism services.

4. Increase the supply of trained educators for students with autism. This recommendation refers to teachers, paraprofessionals and other school-based staff who need specialized training to be effective.

5. Address the need to resolve disputes about autism services between families and school districts. The report's executive summary calls on California to "empower families and local education agencies to collaborate in establishing appropriate and effective individualized education programs for children with ASD," adding that the state needs to review the process for resolving such disputes.

6. Expand the educational and employment options for youth and young adults with autism. This recommendation includes broadening existing post secondary education programs and setting up new technical education models that can lead to employment with supports. The panel also urges the state to "expand innovative community-based approaches to supported employment, transportation, social-recreation programs, and housing for the ASD population."

7. Train emergency workers and first responders about helping people with autism in a crisis.

Endorsement by Autism Speaks Chapters, Focus on Health Insurance

The commission published its report in September, as required by law. On Oct. 22, representatives for the Autism Speaks chapters in San Francisco and San Diego issued statements endorsing the commission's report. You can read a copy of the San Francisco Autism Speaks chapter's press release by clicking on the web link. The statement zeroes in on the health insurance issue as a key ingredient of the commission's recommendations:

"Autism Speaks commends the Commission and its staff for reaching out in countless ways to parents and advocates across California and for listening to our concerns about appropriate and equitable health care insurance for children with autism," said Kristin Jacobson, Chapter Advocacy Chair, Autism Speaks California. "We believe that all health plans and insurers should provide a full range of services for children with autism, including intensive behavioral treatment, such as Applied Behavioral Analysis, a highly effective, evidenced-based intensive behavior modification therapy."

Also see:

* Autism Bulletin articles relating to health insurance

* House Bill Calls on Congress to Establish Autism Education Task Force

Resources for Families of People with Autism in San Diego Wildfire Area

The Autism Society of America today published a helpful list of contacts for people with autism spectrum disorders and their families affected by the wildfires raging through the San Diego area. The society urges families needing support to contact local chapters and announced:

ASA and its local chapters in southern California stand ready to assist families and individuals with autism spectrum disorders in finding the resources they need to help them find shelter or assistance during this crisis. ASA's national phone number is 1-800-3Autism.

See Resources in Southern Calif. for Families and Individuals with Autism for contacts for local chapters in San Diego, Los Angeles, Long Beach, Ventura County, and others. Click on the links below for those specific Southern California chapters:

Autism Society of California
(Los Angeles County)
(800) 700-0037 (Main Phone)
Contact: Greg Fletcher
E-Mail: ca-california@autismsocietyofamerica.org


San Diego County Chapter - Autism Society of America
(619) 298-1981 (Main Phone)
Contact: John VanBrabant
E-Mail: ca-sandiego@autismsocietyofamerica.org

Los Angeles County Chapter
(562) 804-5556 (Main Phone)
Contact: Caroline Wilson
E-Mail: asalamail@aol.com

Greater Long Beach/San Gabriel Valley - Autism Society of America
(562) 943-3335 (Main Phone)
(562) 941-1931 (Other)
Contact: Rita Rubin/Gloria McNeil
E-Mail: ca-longbeach@autismsocietyofamerica.org

Ventura County Chapter - Autism Society of America
(805) 496-1632 (Main Phone)
Contact: Jennifer McNulty & Cathi Nye
E-Mail: ca-venturacounty@autismsocietyofamerica.org

Inland Empire Autism Society (Riverside County)
2276 Griffin Way, Suite 105-194
Corona CA 92879
(909) 204-4142 x339 (Main Phone)
Contact: Beth Burt
E-Mail: ca-inlandempire@autismsocietyofamerica.org

$2 Million Massachusetts Pilot Program to Offer Autism Services to 80 Low-Income Children

The Massachusetts Autism Division has unveiled a $2 million model program to provide up to 80 low-income children with autism spectrum disorders with home- and community-based services—as much as $25,000 per year for three years.

Children up to age 9 are eligible for the one-on-one services. Families must apply for the program which applies to children under age 9 who meet the income eligibility requirements of the state's MassHealth state health insurance program for low- and moderate-income families. An announcement from the state says:

The funding for this new Waiver Program is limited and the number of applicants that can be served is also limited. The Autism Division expects that up to 80 low-income children will be able to participate at this time. This Waiver Program will provide one-to-one interventions to help children with severe behavior, social and communication problems through a service called Expanded Habilitation, Education. This service is expected to occur in the child’s home under the supervision of trained clinical staff and will use an intervention method as identified by the family and clinician such as Applied Behavioral Analysis (ABA), Floor Time or a Communication Model. The waiver will also provide related support services such as community integration activities and respite.

The purpose of the Waiver Program is to help eligible children with autism to remain in their homes and actively participate in their families and in their communities. The waiver will serve up to 80 children under the age of 9, with an autism spectrum disorder who meet the clinical criteria for the Waiver Program, as well as, MassHealth financial eligibility, which is based on family income. The Waiver Program provides up to $25,000 worth of services and supports, per year, based on the assessed needs of the child. This Waiver Program is for a 3 year period of time and children are reassessed every year to ensure they continue to meet the eligibility criteria for the program. Participation in the waiver program ends, regardless of the start date, when the child reaches his/her 9th birthday.

Massachusetts families with autistic children who meet the eligibility criteria must apply for this program between Nov. 5 and Nov. 16, 2007. More information is available at the website of the Autism Division of the Massachusetts Department of Mental Retardation. Applications are available in English, Chinese, Creole, Portuguese, Russian, Spanish and Vietnamese. Here's an example of the English form. Contact information for the waiver program is available: call toll-free 1-888-367-4435 or e-mail: DMR.autismdivision AT massmail.state.ma.us.

The state also has set up a website for autism services providers to get information about providing services at home and in the community.

One advocate I spoke to mentioned that there has been some commentary on online discussion forums about this program, about how it's a shame that this program is modest and applies only to low-income families. The advocate also mentioned that there were parents who cited the acute need for families of very modest means to access vital autism-related services. Both are right.

Kansas Autism Task Force Looks at Health Insurance Issue

Advocates for people with autism spectrum disorders should take a look at the work going on at the Kansas Autism Task Force, where a group of citizens appointed by the governor have been working to identify the scope of the autism challenge facing the state and what to do about it. In particular, the panel's insurance subcommittee is worth watching because it is tackling the thorny issue of how to share the burden for autism services by engaging the insurance industry. In a report on its September 20 meeting which you can read here in a PDF document, the group states:

Two important points were stressed at the outset of the subcommittee meeting:

1. Early intensive intervention provides dramatic cost savings over the lifespan of an individual with autism.

2. The intent of this subcommittee is not to suggest that the entire burden of financing early intervention be placed on the insurance industry alone. The magnitude of the autism epidemic necessitates that this be a shared responsibility.

This statement asserts two important ideas for both advocates and policy makers: that it's cost effective to provide early childhood autism services because it saves money later; and that there's a collective responsibility for helping people with autism.

The meeting report discusses related issues, including:

* The difficulty that families can have in getting coverage for autism services (one parent, the chief operating officer of a health insurance organization, had to spend more than a year appealing denial of speech therapy coverage by Blue Cross Blue Shield of Kansas).

* Comments from insurance lobbyists who say that covering autism services would raise premiums.

* Notes from a 2004 report from the Kansas Department of Insurance saying autism services coverage would have "no meaningful impact" on overall health care costs in the state.

Michael Wasmer, a member of the Kansas task force and a founder of the Kansas Coalition for Autism Legislation, has issued a call for more testimony from representatives from the health insurance industry for the panel's next meeting on October 25.

The Kansas panel is tackling not just health insurance, but all the important issues—identifying the people affected by autism, best practices for providing services, professional development for those providing services, school-based services and funding—with a goal of recommending legislation to improve availability and accessibility of autism services. You can visit the task force's website to see a summary of its second meeting by clicking here.

Also see on Autism Bulletin:

* Update from Kansas Autism Task Force

* Kansas Appoints Autism Task Force with Goal of Improving Access to Services

* Report with Map of State Health Insurance Laws

British Researchers Unveil Brain Imaging Center Devoted to Autism Studies

Researchers at the Oxford University Department of Psychiatry announced the opening of a special imaging center to study the brains of both children and adults with autism spectrum disorders. The university is calling the Oxford Neurodevelopmental Magneto-
encephalography Centre the world's first brain imaging facility devoted to studying autism. It is located at the Warneford Hospital in Headington, England, about 56 miles west of London.

The magnetoencephalography technology, using a machine like the one pictured above, allows researchers to create a "window on the brain" of its subjects, allowing scientists to watch brain activity as it changes from moment to moment, of an individual subject while they sit upright and perform tasks.

The Oxford Mail newspaper reported the center's opening on October 12, complete with a ceremonial visit by Princess Anne, daughter of Queen Elizabeth II.

The brain scanning equipment costs 2.3 million British pounds, about $4.7 million at today's exchange rate. A Swedish medical equipment maker called Elekta makes this machine. (Note to e-mail subscribers: you can also see a photo of the machine here.)

This project fits into a broader effort to understand brain anatomy and genetic components of autism spectrum disorders, one of several themes of autism research ongoing around the world. Other notable research efforts are underway to examine potential environmental factors in the incidence of autism. You can read about past coverage of these and other notable research studies by going to Autism Bulletin's archives for articles labeled "research," or by clicking here.

Oxford unveiled plans for the brain imaging center in January. The university's press release emphasizes the need to make subjects comfortable while researchers monitor their brain activities. One look at the machine's large apparatus shows this could be a challenge with young children; notably, the Oxford facility is supposed to look less imposing. More from the press release:

The scanner will help Oxford University's autism research group, led by Professor Anthony Bailey, to understand the brain basis of autism. It will also be a resource for researchers from all over the UK.

MEG (Magnetoencephalographic) scanners provide a 'window on the brain': they allow doctors and researchers to view brain activity whilst a particular task is performed, showing both where and when different parts of the brain are active. The scanner measures the tiny magnetic fields generated by brain activity.

'MEG is ideal for studying autism,' says Professor Bailey. 'The scanner is silent and safe, children and adults can sit upright, and researchers are able to sit next to them, making it a stress-free experience. Imaging the brain allows us to compare the brain activity of someone with autism to that of someone without autism.'

MEG scanners allow the patient or subject to sit upright and unenclosed. MEG scanning also provides millisecond time resolution: in other words, it shows how brain activity is changing from one moment to the next.

Until now, Professor Bailey's team has traveled to Finland to measure brain activity, either taking with them adults with autism from the UK, or studying affected Finnish children. 'The new centre in Oxford will transform our research into the brain basis of autism,' he says. 'It will also be a resource for other autism researchers.'

Professor Bailey and his team's MEG research in Finland has already shown that human faces are processed in a quite different way in children and adults with autism. 'The next step is to understand why there is this difference in processing and how it changes with development,' he says. 'Ultimately we aim to develop more effective treatments.'

The £2.3m MEG Centre has been designed as a relaxing environment for children with autism, with plenty of exposed wood, natural light and open space. It contains a 'practice' scanner which allows children to get used to the process without using up valuable time on the active scanner.

Studies using the MEG scanner will form one part of the work carried out by the autism research group. The team leads an international study to identify autism susceptibility genes; uses several imaging techniques to understand the brain basis of autism; and is investigating how computer-generated worlds can be used to develop social skills. The team is currently looking for children and adults with autism to take part in their studies. Individuals and families interested in learning more about, or helping with, research by the group can contact them on autism.research@psych.ox.ac.uk.