On April 13, the California Senate Select Committee on Autism and Related Disorders presented the preliminary draft recommendations from the sub-committees on early identification, insurance, housing, and employment. Click on the issue areas below to view the draft recommendations:
Early Identification
Insurance
Housing
Employment

The Early Years Break-out Session at the MAC Annual Meeting focused on what goals the Early Years group should focus on for the next year. The minutes are below.

Goals for the Early Years Sub-Committee

Through our collaborative efforts, the Early Years Subcommittee will develop and implement the following Strategies:

2008-2010
* Educate the local community about autism, and help provide information, referral and context for empirically evaluating controversial claims regarding causes and treatment
* Educate parents about developmental warning “flags”, and help them be effective advocates with their physicians and other service providers
* Educate physicians and other medical professionals about autism, to ensure prompt, effective screening, diagnosis and referral for treatment
* Ensure early, intensive intervention for children with autism before age three
* Ensure that we have a “system of care” in place for all people with autism, regardless of income level, ethnicity, language, and literacy
* Develop culturally sensitive strategies for outreach and education in diverse multi-ethnic and low income communities (for example, “mentores” – paraprofessional members of the community, who talk to parents; written information in English and Spanish; videotaped information in English and Spanish; pictorial information; website information in English and Spanish)
* Ensure continuity of care across the spectrum of age, ASD diagnoses/eligibility criteria, and systems of funding and care

2010-2011
* Continue to educate the professional community especially physicians and nurses on autism and related disorders and the importance of early screening and diagnosis
* Outreach to the Spanish community through bi-national health fairs
* Meet quarterly with other birth to 5 groups to improve collaboration to benefit consumers
* Continue to update the MAC website
* Link families with support groups hosted by MATRIX or other organizations in the community

Participant Input from Early Years Sub Committee- MAC Annual Meeting
March 6, 2010

• A therapeutic component for preschoolers with EBD/SED
• Explore why eligibility changes from ASD to Speech & Language delays when transitioning from Part C to Part B
• Explore creative ways to link service providers to families and families to providers
• Insurance issues
• Outreach to Waldorf and charter schools

Joint Meeting of the
Birth-to-Five Members of various Roundtables

March 11, 2010

AAA-California Automobile Association
99 Smith Ranch Road, San Rafael 94903

Subcommittee Members in Attendance: Susanne Kreuzer, Easter Seals, Stephanie Stein, MATRIX; Meghan Johnson, Easter Seals, Phyllis Ring, Easter Seals, Gail Cavello, Blind Babies, Doug Lipinski, SLP, Alyea Sandovar, MA, JFCS, Diana Hill, FSA, Gloria Droquett, CAM; Joan Troppmann, Headstart, Kathy Truax, FSA, Linda Mariscal, Health and Human Services, Pam Doer, CPS, Linda Cimoli, MCOE; Katrina Ferreyra,Coordinator MAC; Minal Doshi, GGRC, Wyoming Irwin, Early Start MCOE, .

Member updates:
• Katrina and Susanne spoke of about the MAC Annual meeting to be held March 6, 2010 at Hollis Hall. Key note speaker was David Amaral, PhD from the M.I.N.D. Institute. Approximately 60 individuals were in attendance

Minutes from Last Meeting:

Susanne shared information explaining the various birth to 5 Roundtables that meet in Marin and what their purposes are information was distributed about the various activities that each roundtable has been working on.

Early Start Roundtable: Presented a Speaker series in the fall on various topics related to Early Intervention. The program was held at the Wellness Center in San Rafael. Some of the presentation were videotaped. Spoke about he history of the Early Start Roundtable

Special Needs/Mental Health Roundtable: Presented the history of the Special Needs/Mental Health Initiative funded by First 5 Marin. Spoke about funded partners and distributed information regarding the program.

MAC Early Years Subcommittee: Presented information on how the MAC was established and the subcommittees developed. Information regarding the vision and goals of the Early Years Subcommittee was distributed as well as information on the MAC Website.

After some discussion it appears that it would be helpful for the joint groups to meet on a quarterly basis and work more closely together in doing outreach coordination and presentations in the community.

The group felt that first priority was to share information and be better at linking ourselves together. Consensus determined that we would focus on two areas first
1. Stephanie from MATRIX suggested that a Tab for the Early Intervention programs could be put on their website to link families who have young children with special needs to each other and programs.
2. Explore the process of developing a yahoo email group for the professionals to share information. Katrina and Susanne would investigate

Next Joint Meeting: June 10, 2010 12-1:30
Please join us! Send an email to kferreyra@lifehouseagency.org if you would like to get on the early years mailing list!

—– Forwarded Message —-

http://online.wsj.com/article/SB20001424052748703422904575039351632663996.html

Why is a child born in northwest Los Angeles four times as likely to be diagnosed with autism as a child born elsewhere in California?

Medical experts have pondered for years why autism rates have soared nationwide, and why the disorder appears to be much more prevalent in certain communities than in others. Now, some recent studies that zero in on California may shed some light on these baffling questions.

Researchers from Columbia University, in a study published in the current Journal of Health & Place, identified an area including West Hollywood, Beverly Hills and some less posh neighborhoods that accounted for 3% of the state’s new cases of autism every year from 1993 to 2001, even though it had only 1% of the population.

Another recent study, from the University of California, Davis, published in Autism Research, also found high rates of autism in children born around Los Angeles, as well as nine other California locations. Autism, usually diagnosed before a child is 3 years old, is a developmental disorder characterized by impaired social interaction and communication and repetitive behavior.

Both of the California-based studies suggest that local environmental or social factors are driving the high autism-diagnosis rates. And they conclude that childhood vaccinations—which some people fear is a factor behind rising autism—are not to blame. Otherwise, diagnoses of the disorder would be more evenly dispersed, they say.

The studies also disagree on some points. According to the UC Davis study, greater concentrations of autism occur in communities where parents are highly educated, which could mean they have more awareness of autism and access to treatment. By contrast, the Columbia researchers discount the role of educational levels. They believe that social influences, such as shared information about diagnoses, doctors and services, are largely responsible for the high rates they found in parts of Los Angeles.

In Los Angeles itself, residents have a variety of explanations for the high autism rates, ranging from a family’s affluence and the activity of autism-advocacy groups to past air and water pollution.

James McCracken, a child psychiatrist at the UCLA Center for Autism Research and Treatment, says families often have to fight with state bureaucracies to be deemed eligible for services, and some spend thousands of dollars for private evaluations. “You can see the possibility for inequity according to social advantage or cultural background,” he says.

But Moira Giammatteo, a San Fernando Valley mother with a 12-year-old autistic son, doesn’t believe that affluent, educated parents are gaming the system. “It’s not like people think, ‘get this label and you can get services.’ Nobody wants this diagnosis; most parents are in denial,” she says.

Some of the increase in autism rates in past decades is due to changing definitions. Until the early 1990s, diagnoses of autism were rare and included only children with low I.Q.s, who were deeply withdrawn and had very minimal language skills. In 1994, diagnosticians adopted the term autism spectrum disorder (ASD), which also includes children with impaired social skills but not necessarily severe intellectual disabilities or language delays.

On average, one in 110 American 8-year-olds had an autism spectrum disorder in 2006, an increase of 57% since 2002, according to a December report from the Centers for Disease Control and Prevention. Some parts of the U.S. are seeing much higher rates than others: Metropolitan Phoenix, for example, has twice the prevalence as northern Alabama.

Whether those differences reflect actual higher risk in different regions, differences in awareness among local residents, or simply variations in record keeping is something the CDC is trying to untangle.

“We still don’t know what causes autism, and we don’t know a lot of the underlying factors, so we can’t rule out the possibility that there are differences in the distribution of risk factors.” says Jon Bai, a CDC epidemiologist.

Theories abound to explain the steep increase that has occurred in recent years. Some experts attribute it to genetic changes within families. But others say genetic changes wouldn’t occur so quickly and instead they blame environmental toxins or childhood vaccinations.

Another possible explanation: Greater awareness of the disorder, and programs in some parts of the country that can help children regain skills, may make parents more willing to have their children diagnosed.

“But awareness can only go so far” to explain the rising levels of autism, says Dr. Baio. “We are still identifying more children with autism, in all levels of severity, than ever before, which is why this continues to be a perplexing and urgent concern.”

Around the U.S.

Nine out of every 1,000 8-year-olds were diagnosed with autism spectrum disorder as of 2006. But rates vary widely in the survey areas, located in 11 states, that the CDC monitors. (Prevalence per 1,000):
Alabama 6.0
Arizona 12.1
Colorado 7.5
Florida 4.2
Georgia 10.2
Maryland 9.2
Missouri 12.1
North Carolina 10.4
Pennsylvania 8.4
South Carolina 8.6
Wisconsin 7.6

Source: CDC’s Autism and Developmental Disabilities Monitoring Network

In California, children with autism or ASD must be “substantially developmentally disabled” to qualify for services from the state’s Department of Developmental Services (DDS). The two recent studies used data from the DDS in their research. The studies looked at where the children with autism were born, not where they were diagnosed, so that their findings wouldn’t be skewed by families moving into the areas.

As part of their work, the Columbia researchers constructed a “SimCity map of California,” referring to the city-building simulation game, says Peter Bearman, the lead investigator. They assembled data pinpointing not just where children with autism were born and diagnosed but also all the parks, day-care centers, doctors’ offices, autism-advocacy groups and other gathering places.

The result: significantly higher occurrences of autism in a large area of Los Angeles stretching from Santa Monica in the west to beyond Burbank in the east, and from El Segundo in the south to the San Fernando Valley in the north. The epicenter of the autism cluster: areas around Hollywood.

Dr. Bearman says he believes social influences are the leading cause for the high autism rates in Los Angeles, although the researchers continue to examine environmental issues.

Other studies have shown that older parents run a greater risk of having an autistic child. But when the Columbia researchers adjusted the Los Angeles cluster to factor out parental age, the higher levels remained. Dr. Bearman says he believes the high levels will also remain after the data are adjusted for education levels, socio-economic status and other demographic characteristics in future studies.

In addition to parts of Los Angeles, the UC Davis study located clusters around Santa Ana, San Diego, San Francisco, Santa Clara, Fresno and Stockton where children had at least a 70% greater chance of being diagnosed with autism than in surrounding areas.

The Davis researchers believe their findings can be explained solely by parents’ educational levels—by adjusting the data for educational levels, the discrepancies in autism rates virtually disappeared.

“There are many ways that you can see that a highly educated person will be more successful at getting the diagnosis,” says Karla Van Meter, the study’s lead author. “If I’m more educated, I might have different expectations for my child,” she says.

Corrections & Amplifications
An earlier version of this article incorrectly spelled Jon Baio’s surname.

Write to Melinda Beck at HealthJournal@wsj.com

Hello Marin Autism Collaborative Members

Great News

I just received a copy of the completed DVD on Peace Officer Standards and Training for ASD in the mail.

Over 600 law enforcement agencies in CA will be receiving a copy of this.

It is now important for all of us to ask our Law Enforcement trainers to choose this DVD when training officers. They have many DVD’s to choose from.

It is now important for all of us to help our trainers understand the need in our county for this training.

I am sure we can identify ways to help our trainers see how very important this training is. It is up to us to rally for our children, teens and adults.

When officers understand our children’s needs they also understand many others with developmental learning challenges

This is another great accomplishment of the California Autism Blue Ribbon Commission!!!!

Karen Kaplan
Karensupportsu@comcast.net
415 497-3751

As we start the New Year, I am very pleased to announce the new website for the Autism Research Program at Kaiser Permanente Northern California: www.autismresearch.kaiser.org.

We’ve designed the site to provide an overview of the many autism research projects underway at the Division of Research and to be a resource for families and providers. Our intent is to keep the site timely and lively so that parents, providers, and researchers can stay current and connected to the most up-to-date news on autism research at Kaiser Permanente. We also provide many downloadable materials containing general information about autism and describing the system for support and services at Kaiser Permanente Northern California.

We believe that the path to prevention starts with research. Please help us raise awareness of the opportunities for families to participate in research by adding a link on your organization’s site to the Kaiser Permanente Autism Research Program website. We are eager to share resources and work together to advance the scientific understanding of autism spectrum disorders.

We welcome your comments and questions about the website or our program. Please contact us at autism.research@kp.org.

An interesting article from the New York Times on the cost of autism and health insurance…

http://www.nytimes.com/2010/01/23/health/23patient.html?%2334;autism =&sq=&st=cse&%2334;=&scp=1&pagewanted=print
________________________________________
January 23, 2010
PATIENT MONEY
Dealing With the Financial Burden of Autism
By WALECIA KONRAD
WHEN Jeff Sell’s twin sons were found to have autism 13 years ago, he, like so many other parents in the same situation, found himself with a million questions: Will my children be able to function? What are the best treatments and where do I find them? How will this affect the rest of my family?
And besides those monumental worries, Mr. Sell kept asking himself another fundamental question as he began the long string of doctor and therapist visits with his sons: “How in the world am I going to pay for all this?”
Autism trends, treatments and therapies routinely make headlines. Often overlooked, though, is the financial burden for many families with autistic children.
Treatment is extremely expensive. Direct medical and nonmedical costs can add up to as much as $72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum, according to a study from the Harvard School of Public Health.
That figure includes medical costs like doctor visits, prescriptions and occupational and speech therapy, as well as expenses for things like special education, camps and child care, said Michael Ganz, the author of the study, who is now a health care consultant.
“It can cost $3.2 million to take care of an autistic person over the course of his or her lifetime,” the study said.
More families are grappling with the disorder than ever before. One of every 110 8-year-old children in theUnited States has been diagnosed with autism — and one of every 70 boys, according to the latest survey from the Centers for Disease Control and Prevention, released last fall. That is up from one in 150 children in a comparable report released in 2007.
“The numbers are just amazing,” said Pat Kemp, executive vice president of the advocacy group Autism Speaks, “Unless we attack this like a national health crisis, we’re going to have a huge economic crisis on our hands.”
Certainly families feel the financial strain. Many health insurance policies do not cover autism treatments, while those that do often have severe limits. And there is very little government or private financial assistance available.
In many cases these children will need assistance all their lives, Mr. Ganz points out. Making sure there is money for the future is something else parents worry about.
When his sons received their diagnosis, Mr. Sell was practicing personal-injury law in Texas, and he began paying for many of their treatments from his own income and savings. In 2005, as he became more involved in autism issues, he joined the staff of the Autism Society of America in Bethesda, Md., where he is now a vice president.
His sons are now 15. One, Joe, is talkative and considered “high functioning.” The other, Ben, is nonverbal with profound autism.
“What works for one child doesn’t necessarily work for the other,” Mr. Sell said. “So we’re talking about finding and paying for twice as many treatments.”
In the early years, the Sell family had some autism coverage under Mr. Sell’s health insurance. But claims for certain therapies, tests and treatments were often denied. “I was very aggressive about appealing those denials, and I often won,” Mr. Sell said.
But even with coverage, Mr. Sell found he needed to pay enormous amounts out of pocket to come close to giving his sons the 20 to 40 hours of behavioral therapies each week that were often recommended. (Eventually, as discussed below, Mr. Sell was also able to obtain financial assistance through a special part of the Medicaid program.)
Although direct financial support may be scarce and hard to obtain, there are several autism information and advocacy groups that routinely help parents navigate financial hurdles. Here is a road map parents can use to get started.
CHECK YOUR INSURANCE Coverage for autism treatments is still far from common, but it is improving. Some large employers offer policies that cover treatment, and 15 states have passed laws mandating at least some autism-related coverage. The Autism Society’s Web site lists the relevant states.(That section of the site is still under construction, but you can scroll down to see the states.)
In addition, Maine and New Hampshire both have legislation pending that could pass soon, Mr. Kemp said.
If you do have coverage, watch for limitations. Because treatment for autism is so individualized, there are few uniform standards or protocols for insurance companies to follow. That means parents often have to argue that a certain therapy or treatment is necessary. Also, be sure to check any caps on treatment, Mr. Sell warns. What may look generous — say $36,000 a year — can be spent quickly. Or there may be limits on how many sessions of a particular type of therapy will be paid for each year.
And you will want to coordinate your insurance coverage with the services you may be receiving from your child’s school. If an occupational therapist sees your child regularly in school, for example, you may want to save your insurance dollars for social interaction therapies.
In addition, you may need to be especially aggressive about coverage for some medical conditions. Gastrointestinal problems, for instance, are extremely common in autistic children.
Mr. Sell found himself fighting for such coverage for Ben, his nonverbal son. The insurance company had denied the claim for gastrointestinal testing, saying that because Ben’s behavior problems were related to autism, the testing was not covered.
Mr. Sell, convinced Ben was in pain and could not tell anyone what was wrong, appealed and won. The tests showed that Ben had ulcers and lower-intestine problems that still occasionally flare up and require treatment.
MEDICAID WAIVERS Some states offer Medicaid coverage for children with autism without taking the family’s income into account — only the child’s diagnosis. This is usually reserved for fairly serious cases but is worth exploring, Mr. Sell said.
“This was a godsend for us,” he said. The waiver, he said, allows families access to services that private insurance won’t cover and that they wouldn’t be able to afford otherwise.
With the waiver, Mr. Sell was able to get more home-based speech and occupational therapies for his sons to supplement the sessions they receive at the public school they both attend. Medicaid also covers recreational therapy during which a specialist takes Ben and Joe on hikes and other outings, giving the parents some downtime.
To see if your child is eligible for a Medicaid waiver, go to the Centers for Medicare and Medicaid Services Web site and click on your state.
Because Medicaid is one of the few government lifelines available, waiting lists for waivers can be extremely long. Mr. Sell, for example, waited nine years to get waivers for his sons.
“Just go ahead and get on the list and try not to be too discouraged,” advised Mr. Sell. “Many states are moving faster now.”
GO LOCAL Many autism advocacy organizations, including Autism Speaks and the Autism Society of America, are affiliated with local chapters throughout the country. In addition, most states, counties, towns and cities provide lists of local autism resources and support groups.
It is people in the local groups who will know all the resources available. They can also help you keep up with the latest research, so you don’t spend time and money chasing the many unsubstantiated “cures” out there. They will also have lots of practical advice, like which dentists, optometrists and even barbers are good with autistic children.
“You think going to the barber is no big deal?” Mr. Sell asked. “Just try it with an autistic child.”
OTHER RESOURCES A handful of organizations like Easter Seals and the National Autism Associationoffer financial help to struggling families. Autism Family Resources and United Healthcare Children’s Foundation also offer grants to pay for autism treatments.

Kidspace is pleased to announce that Social-Behavior Coach Karen Wolfe, MA, will be offering social skills groups beginning on Friday afternoons in January. Enrollment is open. Email info@kidspacetherapy.com or visit www.kidspacetherapy.com.

The EARLI study is seeking volunteers who have a child with ASD and are planning to get pregnant or are less than 20 weeks pregnant. The study is being conducted in Maryland, California, and Pennsylvania. See this flyer for more information.

This recently released study demonstrated, again, the effects of early intervention for toddlers with autism. See the link here.