Tuesday, May 31, 2011

Reduced Sentence for Neli Latson

An earlier post reported that Neli Latson had received a lengthy sentence for assaulting a law-enforcement officer. The Fredericksburg Free Lance-Star reports on a dramatic new development:
A judge Tuesday suspended most of the 10½ years a jury had recommended for an autistic man whose assault on a Stafford County deputy forced the officer to retire.

Reginald Cornelius “Neli” Latson, 19, was instead ordered to serve two years in prison.

A courtroom packed mostly with Latson’s supporters watched the proceeding in Stafford Circuit Court.

Latson’s case has attracted widespread attention, with many people insisting that Latson’s condition and a long prison sentence do not mix.

In suspending 8½ years, Judge Charles Sharp imposed conditions that include several residential treatment programs and intensive probation once Latson is released from prison. He has been behind bars for a year while the case worked its way through court, and that time will count toward his sentence.

During a three-day trial in March, a jury found Latson guilty of assault on a law-enforcement officer, wounding in the commission of a felony, disarming a police officer and obstruction of justice.

Latson had pleaded not guilty by reason of insanity.

Deputy Tom Calverly, who had been in law enforcement for more than 30 years, suffered severe ankle damage and other injuries during a May 24, 2010, scuffle with Latson outside North Stafford High School, where Calverly worked as a resource officer.

Calverly was forced to give up his job because of the injury, and ankle-replacement surgery is pending.

Latson’s attorney, William Reichhardt, never disputed that Latson injured Calverly. But he argued that Latson’s conditions, which include a form of autism known as Asperger’s, made it impossible for him to control his actions that day.

The incident began when several children at Park Ridge Elementary School reported seeing a man with a gun at the nearby Porter Library.

Global Perspectives on Autism

Today the Subcommittee on Africa, Global Health, and Human Rights of the House Foreign Affairs Committee held a hearing titled "Global Perspectives on Autism—A Growing Public Health Crisis"

Video here.

AFP reports:

Activists and experts pressed the US Congress on Tuesday to do more to help promote worldwide awareness of autism, which they said is becoming an escalating health crisis.

"Autism is a 'developmental disability pandemic.' It is largely under recognized, under appreciated in its impact and under resourced," argued Representative Chris Smith of New Jersey, who leads a House subcommittee on Africa, Global Health and Human Rights.

...

"I think the (South Korean) study has set the stage for more investigation," Andy Shih, scientific affairs chief at Autism Speaks, told the panel.

Shih called the findings in South Korea "startling," and said they "raised important questions about if we are underestimating" ASD prevalence in the United States.

Around the world, recent years have seen many Western countries put in place screening programs. But developing countries lag far behind in screening and in some cases, particularly in Africa, in overcoming cultural stigma enough to make progress on diagnosis and care fronts, Smith and others noted.

"Communication is the key," said Brigitte Kobenan, an Ivory Coast native who has a son with autism and founded Autism Community of Africa. She said many government officials in Africa were not aware of the condition. And people in some African nations treat a child with ASD as a bad omen, hiding them for fear they will get no support and only be ostracized.

But media campaigns and social workers can get the word out as a first step, Kobenan added.

Arlene Cassidy, of Autism Northern Ireland, said on a remote connection that boosting autism's profile for research and as a public health issue was critical.

"The status quo is against us... The funding priority overall is still very low," Cassidy said. "When there's no data, there's no problem," she said. "The key is finding the budget... and quantifying the need."

California Assembly Shelves Insurance Mandate

Autism Speaks has sent out an action alert on the California mandate:

Thank you so much for all of your hard work over the last few months. As you know, we were working hard to have AB 171, the autism insurance reform bill, pulled from the suspense file in the Assembly Appropriations Committee so that it could continue through the legislative process this year.

The Committee met last Friday, May 27, 2011 and it decided to defer all matters relating to health insurance coverage until 2012, including AB 171.

One way you can help NOW for a stronger initiative in California next year is to get more people involved with Autism Votes.

Here is How YOU Can Help:


1) REGISTER FRIENDS AND FAMILY AT AUTISM VOTES.

One way that we will have a stronger initiative next year is to have more people in California making calls and sending emails in each district - statewide. You can help by asking people you know to participate. Think outside of the "autism box" and involve your extended family, neighbors, co-workers and friends by asking them to register at www.autismvotes.org.

2) Stay Tuned! We know this is disappointing but we are not giving up. Working together we will achieve autism insurance reform in California.

For more information on the California autism insurance reform initiative visit www.autismvotes.org/California.

Shelley Hendrix
Director of State Advocacy Relations
Autism Speaks

California Cuts, Continued

More cuts loom in California.

Mediha Fejzagic DiMartino reports at The San Bernardino County Sun that Gov. Jerry Brown's May Revision includes $174 million in general fund savings achieved through cuts to Department of Developmental Services.

But even though it's showing results, Prevention Program will likely change - in its proposal on how to reach the $174 million figure it submitted to the Legislature on May 16, DDS suggested limiting program's scope and transferring its management from regional centers to parent-staffed Family Resource Centers.

"Early prevention program reduces the issues identified through assessment and evaluation," said Keith Penman, executive director of San Gabriel/Pomona Regional Center. "Family Resource Centers don't have clinical monitoring and assessment capabilities. They are not licensed professionals. It's a way to provide a level of care that may not have same value to the families."

The Prevention Program consists of intake, assessment, case management, and referral to various agencies for those infants and toddlers who are at risk for developmental delay. It was established in October 2009 after changes in eligibility were imposed to achieve savings in the DDS' comprehensive Early Start Program.

"The criteria became tighter, a child had to be more disabled, not just have a speech delay," Penman said. "It had a dampening effect on our clients. We had a downturn in numbers of referrals to regional centers across the state. But we still had the safety net of prevention program, in which we monitored the children, provided assessment and evaluation. Their progress was tracked."

The transfer is poised to save state $7.5 million.

"Prevention gives the baby a jump-start, because they get really intense services early on," said Carol Fitzgibbons, an executive director of the Inland Regional Center. "Catching up costs more and can become a burden for life."

...

The DDS' proposal also includes implementing an Annual Family Program Fee. To achieve $7.2 million in General Fund savings, DDS may require some 46,900 families to pay an annual family program fee in the amount of $150 or $200 depending on family income.

"Every time you have a program that has been free for number of years, it does make people less willing to participate or even to find out if they are eligible," Penman said.

Service provides contracted by regional centers will not remain immune to the cuts either.

Adding $13 million to the pot, a 4.25 percent reduction in payments regional centers pay to agencies providing service to developmentally disabled will likely continue.

"It puts our providers in a position of not being able to pay their staff adequately, and if you can't retain qualified staff, services to clients get diminished," he said.

"Some of our vendors, like the Goodwill are nonprofit organizations, but not all can fundraise and you can't live on fundraising," Fitzgibbons added.

Regional centers are also looking at 4.5 percent reduction in resources. Their workload is likely to get heavier - 80 to 100 cases per case manager as opposed to no more than 60.

Monday, May 30, 2011

Asperger's and the DSM

ABC News reports on Asperger's and the DSM, using as a peg the story of Eileen Parker, who got a diagnosis of Asperger's at the age of 41.
Parker said the Asperger's diagnosis, which is used interchangeably with high-functioning autism, made it easier for her to get along with others -- even her husband and their four kids. "They could finally understand why I was a certain way. They said, 'Oh, that's why you're like that.'"

The American Psychiatric Association formalized the diagnosis of Asperger's in 1994, 50 years after it was first described by Austrian pediatrician Hans Asperger. But the association plans to remove the term "Asperger's" from its new diagnostic manual, set for release in 2013 -- a decision that has sparked criticism from advocacy groups.

"When the term 'Asperger's' started to get used, it was a tremendous relief for families of children and adults with the syndrome. They finally had a name for what was going on; they could finally understand what the struggle in their lives was about," said Dania Jekel, executive director of the Asperger's Association of New England. "My worry is that we'll go back 16 years to a time when folks with Asperger's syndrome will not be recognized."

But members of the American Psychiatric Association's Neurodevelopment Disorders Workgroup, the group spearheading the change, said removing the term "Asperger's" from its manual and instead refering to it as an autism spectrum disorder will help focus the diagnosis on an individual's special skills and needs at that moment in time.

The first line of this excerpt is misleading. People have used the term for one form of high-functioning autism that does not include language delay and instead involves one-sided verbosity and narrow interests. While all people with Asperger's have high-functioning autism, not everyone with high-functioning autism has Asperger's. The current controversy revolves around the question of whether this distinction is clinically useful. The point here is that people in the community have spoken of Asperger's as if it were a distinct disorder and have not used the term interchangeably with the broader category of HFA.

Sunday, May 29, 2011

CARA: MIA Groups, Active House Members

Left Brain/Right Brain reports:

Last week, the Combating Autism Reathorization Act was introduced into the U.S. legislature last week. Many organizations were ready with quick responses: the Autism Science Foundation,ASAN, and Autism Speaks to name a few.

How about the organizations which promote the idea that autism is a vaccine injury? Organizations like Generation Rescue, the National Autism Association and SafeMinds, and Talk About Curing Autism?

A quick survey of their websites shows nothing. Nothing on the front pages that I can see. Nothing on their news pages. If I’ve missed it, let me know.

Sure, you can find great information on their sites. Like “Vaccine Injury/Autism Study, A Federal Cover-Up?” or how to buy compounded drugs or sunglasses. Or “Jenny McCarthy” in big letters. But on a key piece of legislation comes through and there’s essentially silence.

Just an observation.

A release from Representative Chris Smith (R-NJ):
Congressmen Chris Smith and Mike Doyle, the co-chairmen of the congressional caucus aimed at helping autistic individuals, today introduced a package of bills designed to reauthorize the nation’s landmark program for autism surveillance, research, education, awareness and intervention; to authorize new service programs; and to establish a national autism initiative.

These bills offer a comprehensive approach to tackling this epidemic,” said Smith, whose own state of New Jersey is believed to have the highest rate of autism in the country. “We must remain committed in all areas, including research, federal policy and patient services so that all families affected by an ASD or other developmental disability can improve their lives with the latest treatments and have hope for a better future.”

Smith and Doyle, co-chairs of the bipartisan Coalition on Autism Research and Education (CARE), introduced H.R. 2005, “The Combating Autism Reauthorization Act,” HR 2006, “The National Autism Spectrum Disorders Initiative Act,” and H.R. 2007, “The Autism Spectrum Disorders Services Act.”

I’m pleased to join my Autism Caucus co-chair Congressman Smith and our colleagues in the Senate introducing legislation today to reauthorize the Combating Autism Act and dramatically increase services for both children and adults with autism,” Doyle said. “The provisions that we passed nearly five years ago have made big differences in the lives of thousands of autistic Americans and their families. The Combating Autism Act’s research on the federal level has spurred innovation and growth in the private sector, giving individuals the opportunity to take greater advantage of better services throughout our communities as we strive to understand autism.”

Saturday, May 28, 2011

More on the Combating Autism Reauthorization Act

The Combating Autism Reauthorization Act (CARA) has begun its legislative path.

The Senate bill number is S. 1094.

Prime sponsor is Robert Menendez (D-NJ). Cosponsors are Scott Brown (R-MA), Richard Durbin (D-IL), and Mike Enzi (D-WY). The committtee is Health, Education, Labor, and Pensions (HELP).

From the Autism Science Foundation:

The new bill reauthorizes the Combating Autism Act of 2006 (CAA), which has played a critical role in advancing autism research and treatment. The original CAA, set to sunset on September 30, 2011, expanded federal investment for autism research through NIH, increased services, diagnosis and treatment through HRSA, and enhanced surveillance and awareness efforts by the CDC. The CAA authorized nearly $1 billion in federal research spending over five years—increasing autism research spending by almost 50 percent. This research has led to improved understanding of the causes of autism and has helped us begin to develop new interventions. Additionally, the research funded through CAA has increased the ability of professionals to more properly screen, diagnose, and treat individuals with autism. The Combating Autism Reauthorization Act of 2011 ensures that the programs established under the original law continue for an additional three years, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee (IACC).

Michelle Diament reports at Disability Scoop:

Mindful of the political climate, advocacy organizations including Autism Speaks and the Autism Society are backing the bill, acknowledging that maintaining the current level of support is probably the best that can be expected.

“It’s realistic,” says Alison Tepper-Singer, president of the Autism Science Foundation, which is also supporting the legislation. “There are a lot of things this community needs but this is a step forward in that it doesn’t allow the programs we’ve already made to lapse.”

But not everyone is on board. The Autistic Self Advocacy Network is strongly opposing the legislation, arguing that the current bill focuses too little on services for individuals with autism and pays almost no attention to adults with the developmental disorder.

“It tells adults and all those families waiting for services that they’re just going to have to wait for three long years,” says Ari Ne’eman, president of the self-advocate group.

It’s not immediately clear when Congress will take up the legislation, but advocates say they expect lawmakers to act quickly.

Friday, May 27, 2011

Thursday, May 26, 2011

The Autism Society & the Ryan Plan

Autism politics has intersected with national budget politics. An email today from the Autism Society:

Yesterday, you received a legislative alert from the Autism Society regarding a U.S. House of Representatives budget bill. That email included language and statements that do not represent the position of the Autism Society or its board of directors. The email was sent out without going through proper review channels and, while I had no prior knowledge of this communication, as CEO Ad Int., I take responsibility for it and apologize for its contents and any implication of a partisan stance. The Autism Society does not make it our practice to engage in any public or private national discussion that implies or suggests a politically motivated or partisan position. Our role must remain non-biased and non-partisan; our position on budget issues is only that we encourage our elected officials to not reduce funding that will negatively impact our constituency.

Sincerely,

Scott Badesch
Autism Society
CEO Ad Int.

Here is the email that prompted the retraction:

Federal Spending Plan is Devastating for People with Autism and Will NOT Reduce the Deficit
Tell Your Senator to Vote NO!

The House of Representatives has passed a disastrous budget that pulls the plug on people with autism, individuals with disabilities, seniors, students and the middle class to pay for tax cuts for the wealthy. The Senate is planning to vote on this budget this week, and your Senator needs to hear from you!

This budget plan, known as the “Ryan Plan” after its author Congressman Paul Ryan of Wisconsin, includes drastic cuts and changes to:

Medicaid: Cuts $750 billion over 10 years and ends Medicaid as a guaranteed benefit by turning it into a “block grant” that leaves cash-strapped states to fill in the funding gaps with very little oversight.

Medicare: Replaces Medicare with a voucher program for younger beneficiaries that will certainly provide less than the current system.

Discretionary Programs: Over time, eliminates most federal government programs outside of health care, Social Security and defense.

Health Care Reform: Repeals and defunds the Affordable Care Act.

The $4.3 trillion from all of these cuts will be used to provide $4.2 trillion in tax cuts over 10 years. Very little money will go towards deficit reduction.

What would these changes mean for people with autism?

There would be no guarantee of services. People with autism could be denied:
health insurance coverage
• home and community-based services
• supportive housing
• job training
• education
• transportation
• and much, much more

Worse yet, states could return to the days where they “warehoused” people with autism and other disabilities in institutions to save money. This would be cheaper under the Ryan plan since states would no longer have to meet the quality standards currently imposed by the Medicaid program for institutions. And waiting lists for home and community-based services would grow much longer.

What can you do?

The Senate is set to vote on this budget THIS WEEK. We must let them know that this plan is just plain wrong for America. Please call your Senators this week. Click here to enter your zip code to get their phone numbers. Or go to the U.S. Senate website: http://www.senate.gov/

What should you say?

• I am a person with autism or a parent, caregiver or loved one of a person with autism (briefly describe your situation, if you like).
• The Ryan budget plan will take funding from people with autism to pay for tax cuts for the wealthiest Americans. And it does almost nothing to reduce the federal deficit.
• A Medicaid block grant would be devastating for me/my family member.
• Please vote against the Ryan budget plan.

Sincerely,


Jeff Sell, Esq.
Vice President, Public Policy & General Counsel
Autism Society


Last-Minute Action Alerts on California Mandate Bill

Action alerts from Autism Speaks:

May 25, 2011 ACTION ALERT!

The people who oppose this bill are busy today making phone calls to these very same legislators begging them to keep AB 171 from moving forward and stuck on the suspense file. Don't let their actions keep you in a position of paying out of pocket for your child's treatment and therapies.

We recevied emails back from people who said they already made calls on this issue. That's great but to move this bill you must make them every day, multiple times, involving others if you want to be louder than the opposition.

You don't want to get a denial notice next May and think - I really could have taken one minute to make those calls last year so this bill would be paid by insurance.

Lather. Rinse. Repeat......enthusiastically!





May 26, 2011 ACTION ALERT!



AB 171 is STILL on the suspense file despite everyone's phone calls. There is hope where there is action! We need you to press harder than you have all week. There is still a chance that Chairman Fuentes could make an exception for autism insurance reform.

He needs YOU to convince him to do this. We need you to convince ten of your friends to help you convince him if you want this California.

You will be glad you made this call and gave it everything you've got.

Here is How YOU Can Help:

1) FAX ASSEMBLY LEADERSHIP AND ASK THEM TO MOVE THAT BILL. Bypass the phones by taking action HERE. It will deliver a fax for you or use the fax number below to send your own fax.

***FAX SPEAKER PEREZ: 916.319.2136
***FAX CHAIRMAN FUENTES: 916.319.2139

2) CALL ASSEMBLY LEADERSHIP AND ASK THEM TO MOVE AB 171 OFF THE SUSPENSE FILE.

**CALL: Speaker John Perez - 916.319.2046
**CALL: Assemblymember Felipe Fuentes - 916.319.2039

Say this with your nicest voice ever:

"Please make an exception! Move AB 171 off the suspense file for a committee vote. Thanks!"

Call once for each member of your house. If you are a constituent of Speaker Perez or Assemb. Fuentes, please be sure to note that when you call. BE POLITE. BE PATIENT in getting through but light those phones up now!

3) ASK YOUR FRIENDS TO HELP SPREAD THE WORD BY POSTING THIS ON FACEBOOK.

"THIS IS OUR LAST CHANCE! Help me get autism insurance reform for California! Go to www.autismspeaks.org/California to take action and fax Speaker Perez and Chairman Fuentes RIGHT NOW! We can't wait another year! Write done below. I want to see how many of my friends helped us."

Encourage your friends in the comments below your post by thanking them and ask them to cut and paste to spread the word.

The people answering the phone should be busy and only give you 30 seconds to talk. If they don't sound cranky of breathless when you call - then they aren't getting enough calls.

Lather. Rinse. Repeat. Until they tell our community we can have a hearing - and then we will turn the phone calls off!

To learn more about California Autism Insurance Reform visit www.autismvotes.org/California.

Happy Dialing and Dialing - Then Emailing!

Shelley Hendrix
Director, State Based Advocacy
Autism Speaks

and

Kristin Jacobson
State Advocacy Chair, California
Autism Speaks

Lawmakers Introduce Combating Autism Act Reauthorization

Senator Robert Menendez (D-NJ) has issued a press release:

Senators Robert Menendez (D-NJ) and Mike Enzi (R-WY) today unveiled legislation to reauthorize the Combating Autism Act of 2006. This legislation ensures that the critical programs established under the original law continue for an additional three years, including CDC surveillance programs, HRSA intervention and training programs, and the Interagency Autism Coordinating Committee (IACC). These programs are set to expire in September of this year without any Congressional action. Senators Richard Durbin (D-IL) and Scott Brown (R-MA) are original cosponsors of this legislation. Representatives Chris Smith (R-NJ) and Mike Doyle (D- PA) will be introducing companion legislation in the House of Representatives.

“Families in New Jersey, more than anywhere else, understand that we need to address autism on multiple fronts. I am proud to introduce this legislation to continue work on research, surveillance, awareness and treatment efforts in order to give these families the support they need. I look forward to passing the Combating Autism Reauthorization Act into law before it sunsets in September in order to ensure that we don’t lose the vital research and services that this legislation provides.” Said Senator Menendez.

“This important legislation continues the good work of the original Combating Autism Act, which assists individuals living with autism and other developmental disabilities and their families, and ensures that those key programs do not expire,” said Senator Mike Enzi (R-Wyo.), Ranking Member on the Senate Health, Education, Labor and Pensions Committee. “This bill safeguards autism research and makes sure that there will be sustained awareness of autism across federal health agencies. I am glad this bill will continue to provide a voice to the community of people affected by this disorder.”

Bob Wright, co-founder of Autism Speaks: "Autism Speaks thanks Senators Menendez and Enzi for their leadership in introducing this critical legislation which deeply impacts the futures of the ever-growing number of Americans diagnosed with autism. Action is needed quickly in Congress to assure the federal government remains committed to addressing this national health crisis."

The Autism Self-Advocacy Network takes exception:

Today, Senators Menendez and Enzi will be introducing legislation extending the Combating Autism Act for three more years. The Combating Autism Act was passed in 2005 without the involvement or consultation of a single Autistic person, let alone the broader self-advocate community. Without legislative action by Congress, the Act would expire on September 30th of this year. While we respect the Senators' good intentions, the Menendez-Enzi legislation would freeze in place the current flawed CAA programs, which fail to make any provision for services, do not incorporate anything about adults on the autism spectrum and exclude self-advocates. As a result, ASAN opposes any long term re-authorization of CAA without badly needed investments in services and vital program reforms to ensure self-advocates are involved at every level. We're urging you to call your Senators and tell them to OPPOSE the Menendez-Enzi re-authorization legislation as too long an extension without any of the needed reforms.

Skepticism on Autism Prevalence

At the Psychiatric Times (registration free but required), Dr. Allen Frances runs through several familiar explanations for the increase in prevalence (expandining definitions, identification of previously-missed cases, environmental toxins, and changes in diagnostic procedures). He mentions a fifth that has gotten less attention:
There is a systematic bias in all large-scale epidemiological studies to
report as mental disorder even mild presentations of symptoms that may not have
any clinical significance. It is entirely plausible that 3% of the population
might have a smidgen of autism- completely implausible that so many would have
an autistic mental disorder. Rates in epidemiological studies should be seen as
no more than a screening upper limit- not a true reflection of the rate of
actual mental disorder in the population being studied.

Human nature and the true rates of neurological illness and psychiatric
disorder all change very slowly. Environmental toxins are more labile, but
generally don’t just pop out of nowhere to make a condition 100x more common
than it was just 15 short years ago. By far the most plausible explanations for
the autism “epidemic” are factors 1,4, and 5. DSM-IV gave autism purchase by
introducing a milder form close to the populous boundary to normality. Then
autism took flight on the wings of definitional diffusion, Internet contagion,
financial incentive, and naïve interpretation of epidemiological results. The
overall rate of autistic symptoms is probably the same as it always has been
since time immemorial- only the naming of them has changed.

Wednesday, May 25, 2011

Mandate Legislation in New York

Shelley Hendrix writes at the Autism Speaks blog:

Passage of reform in New York State is not only incredibly important for New York families of children with autism but a key state for the rest of the country as well. By securing New York, our community sends a clear message to Congress that discrimination against people with autism must end – now. Additionally, it will provide coverage for people who live in states that have not passed reform yet provided they work for a company headquartered here.

For some kids in Utah, Ohio and Georgia, to name a few, relief might be on the way a little early.

I came to Albany to meet with parent advocates and network with other groups to create one formidable force – one mighty and unstoppable river of advocates made up of parents like those who drove up braving the inclement weather and apparently an alligator on the Long Island Expressway.

I also came partly to remind this otherwise progressive state that they have yet to do what 26 other states including Arkansas, Montana, West Virginia and my own home state of Louisiana have done.

The autism community was divided over support for last year’s bill and the river of support was directly affected by the environment. The initiative destroyed as the constituent river forked and flooded the Legislative and Governor office phone lines with calls both in extreme support and determined opposition. In the end, who wants to fund an initiative like this if the community it benefits is fighting about it. In this economy with scare resources, it’s just easier to fund initiatives with a more unified front.

This year though the river is moving along smoothly, staying within its banks. Community leaders from various organizations painstakingly compromised on language introduced one bill this year to move forward in a unified manner. But in order for this bill to become law, New York politicians will need to hear from their constituents. And our voices will have to drown out opposing forces outside the autism community.

Tuesday, May 24, 2011

The California Mandate Bill and Autism Speaks

Peggy Clifford writes in the Santa Monica Dispatch:

Autism insurance reform can be approved in California this year, if voters demand it, according to Autism Speaks, an advocacy group.

AB 171, the reform measure is currently on the suspend calendar, where it can languish indefinitely. Autism Speaks is asking voters to call, email, write, tweet and text Assembly Speaker Perez and Assembly member Fuentes asking them to pull AB 171 off the suspend calendar and pass it favorably out of committee.

In addition, it is asking people to join Autism Votes Mobile by texting “AVotes” to 30644! Autism Votes is an initiative of Autism Speaks.

Speaker Perez’s phone number is 916.319.2046. Assembly member Fuentes can be reached at 916.319.2039. Tell them it’s time to move AB 171 off the suspend calendar for a committee vote. Then, Autism Vote says, “Lather, rinse, repeat and do it again. Light those phones up now!”

It also suggests that everyone ask their friends to post the message On FACEBOOK.


From Autism Votes:
Today we need you to LATHER, RINSE and REPEAT. We need you to call Speaker Perez and Assemblymember Fuentes to ask them to take AB 171 off the suspense file.

If the people answering the phone don't sound breathless when you call them then they aren't getting enough calls. Ask 10 of your friends to help you then call their offices again.



You should only have about 30 seconds to get your message across. They should be that busy.

Here is How YOU Can Help:


1) CALL ASSEMBLY LEADERSHIP AND ASK THEM TO MOVE AB 171 OFF THE SUSPENSE FILE.

**CALL: Speaker Perez - 916.319.2046
**CALL: Assemblymember Fuentes - 916.319.2039

Say this:

"It's time to move AB 171 off the suspense file for a committee vote. Thanks!"

Call once for each member of your house. If you are a constituent of Speaker Perez or Assemb. Fuentes, please be sure to note that when you call. BE POLITE. BE PATIENT in getting through but light those phones up now!

2) CALL FIRST - THEN SEND A FOLLOW UP EMAIL. Your calls should be short and is very important. To explain in more detail why your family wants this, send a follow up note here.

3) ASK YOUR FRIENDS TO HELP BY POSTING THIS ON FACEBOOK.

"Help me get autism insurance reform for California! Call Speaker Perez at 916.319.2046 and Assemblymember Fuentes at 916.319.2039 and tell them "It's time to move AB 171 off the suspense file." Then write DONE below!"

Encourage your friends in the comments below the post to cut and paste this and put it as their status.



Working together we can achieve this in the state of California this year. But it will take everyone participating and letting your legislators know that your family really wants this.

To learn more about California Autism Insurance Reform visit www.autismvotes.org/California.

Happy Dialing!

Shelley Hendrix
Director, State Based Advocacy
Autism Speaks

and

Kristin Jacobson
State Advocacy Chair, California
Autism Speaks

Monday, May 23, 2011

California Mandate: Action Alert

From The Autism Society:

Your Action Needed in California: Move Insurance Reform to a Vote

Please join the Autism Society in advocating for insurance coverage for individuals with autism in California. Call the following two members of the State Assembly and ask them to take AB 171 off the Assembly Appropriations Committee Suspense File so that it can move forward in the legislative process.

The calls need to be made by no later than Tuesday! If we don’t act soon, the suspension list will expire at 5 p.m. on Tuesday, May 24.

Speaker John Perez: 916-319-2046

Assembly Member Felipe Fuentes: 916-319-2039

About AB 171:

  • The cost estimates for AB 171 are high, according to the California Health Benefits Review Board. However, evidence from the 26 states that have already passed insurance reform measures shows that the actual costs experienced have been significantly lower than expected.
  • This is the ONLY bill that will have significant savings for the General Fund because the state is currently paying for insurance services through the Regional Centers. The Regional Centers currently spend more than $300 million annually on behavioral services. If AB 171 is passed, the savings to the Regional Centers alone will be $100 million annually.
  • This is a civil rights issue and California needs to stop discrimination against autism. Autism is the only medical condition for which the standard of care is denied by health insurance.

CDC Study of Developmental Disabilities

Prevalence is in the news again. Nancy Shute writes at NPR:

Fifteen percent of American children have a developmental disability, including autism and ADHD, according to a new report from the federal Centers for Disease Control and Prevention.

That's an increase of almost 2 percentage points from 1997 to 2008, or almost 2 million kids. But that number may be squishier than it sounds.

The new figure comes from the National Health Interview Surveys, which ask parents if their children have ever been diagnosed with a variety of behavioral and developmental problems. That can include assessments by teachers or counselors, so the number is less than airtight. The number also could reflect increasing awareness of autism, and decreasing stigma.

The results were published online by the journal Pediatrics.

The question of how many children have autism has become a huge political issue, used to argue for more funding for early intervention, special ed classes, and insurance coverage. The numbers have also been used in battles over possible causes of autism.

Various studies have put the number of American children with autism as between 1 in 80 and 1 in 240. (The CDC has a good explainer on the varied numbers in the U.S., and in other countries.)

Bloomberg reports:

"Because the prevalence of some of these developmental disabilities is increasing, there's going to be an increased demand on the health system for these kind of specialized medical services," Sheree Boulet, the study author and an epidemiologist at the Atlanta-based CDC's National Center on Birth Defects and Developmental Disabilities, said in a May 20 telephone interview.

Today's study is the first to document the prevalence of developmental disabilities in U.S. children since 1994, Boulet said.

Sunday, May 22, 2011

Asperger Update

Asperger's Syndrome is much in the news. The Daily Beast is running an essay by Lucy Berrington of the board of the Asperger’s Association of New England.

Why is the Asperger’s label worth retaining? At the Asperger’s Association of New England (based in Watertown, Massachusetts), the largest and most established U.S. organization supporting people with Asperger’s, we see daily how powerfully and positively this diagnosis influences the lives of those with the condition. Before 1994, when Asperger’s syndrome was first included in the DSM, they wandered a diagnostic wasteland, sometimes picking up inappropriate labels—bipolar disorder, schizophrenia, OCD, atypical ADHD—that did little to clarify or address their needs. The Asperger’s diagnosis, in contrast, has provided meaningful identity and generated a tremendous international self-help movement. As Temple Grandin, a professor and a prominent autistic American, has said, the size and voice of the Asperger’s community is reason enough to leave the diagnosis in place. A corresponding profusion of literature and research has facilitated leaps in understanding among individuals, families, educators, and clinicians. A simple qualitative scale cannot serve this community and culture.

Moreover, the DSM changes risk an erosion of the autism spectrum at the higher-functioning end. Tony Attwood, a leading Asperger’s expert, has expressed concern that dropping the label will dissuade people from being evaluated. Some aspects of the proposed criteria can be unclear in adults, who might be “undiagnosed” under the numerical cutoffs. Neuropsychological testing instruments can be insensitive to less-pronounced autism, again making diagnosis less likely.

The effect on the continuity of service provision is a major concern. Proponents of the DSM change argue that in the small number of states where students with Asperger’s syndrome are not entitled to special-education services, dismantling the subcategories of autism may broaden access. The move, however, could have the opposite effect nationwide. Higher functioning students are likely to be perceived as inhabiting the “mild” end of the autism spectrum (though there is nothing mild about their condition) and less deserving of supports. Conversely, students with the diagnosis formerly known as Asperger’s could be placed in a catchall autism classroom that will fail its students across the board. The change is likely to lower expectations for many academically capable students.

Retaining the current diagnosis is not about distancing Asperger’s from other forms of autism. This is about classifying a particular subgroup in a way that demonstrably adds value. That Asperger’s is a form of autism does not mean we should know it only as autism. Spanish and Italian are closely related linguistically, yet it isn’t helpful to call Italian Spanish [emphasis added].

PhillyBurbs.com has an item about Asperger's and crime:

Often when Jeff Sell watches police videos of a suspect talk about a horrific crime with the same warmth as a toy robot, avoid eye contact, offer precise detailed descriptions - perhaps even a confession - and appear oblivious to the harm caused, he doesn't see a monster.

What Sell sees is Asperger's.

"That is the textbook definition," said Sell, an attorney and vice president of public policy for the Autism Society of America.

A definition that fits a small but growing number of criminal defendants, such as James Lee Troutman, the 24-year-old man accused of raping and murdering his 9-year-old neighbor Skyler Kauffman earlier this month at the Souderton Gardens apartment complex where they lived.

The so-called Asperger's defense is cropping up in legal cases nationally, as lawyers argue that people with the disorder may be incapable of completely understanding the ramifications of their actions or expressing remorse in a socially acceptable way.

...

Statistically, people with Asperger's are more likely to be a crime victim than perpetrator, according to advocates for people with autism.

A 2007 Autism Society of America survey of more than 1,500 individuals on the autism spectrum and their caregivers found that 35 percent had been the victim of a crime and, of that 35 percent, 3 percent reported being coerced to commit or participate in a crime.

People with Asperger's syndrome accounted for fewer than 5 percent of U.S. prisoners in maximum security psychiatric wards and estimates suggest only about 2 percent of affected individuals exhibit violent or otherwise problematic behaviors, according to a 2009 appearing in the journal Clinical Psychiatry News.

Saturday, May 21, 2011

Colorado Mandate at Work

The Boulder Daily Camera reports on autism mom Jill Tappert, who helped lead the successful effort to pass an insurance mandate in Colorado:

"What makes me mad," says Tappert, "is that someone could choose to go out and skydive, crack open his head, and insurance would cover the cost of treatment, of rehabilitation, for however long it takes.

"My daughter was born with autism, and that wasn`t covered. Autism was often specifically excluded in policies -- the only medical disorder excluded. It was discrimination."

The families saw the campaign turn their way when they told their compelling stories to their own district legislators. Nearly every lawmaker heard from a constituent with an autistic child.

"We have contact information for families with autism, so we knew where they lived, and we knew what districts they matched," [Autism Society's Betty ] Lehman says.

"Those families went to work."

Sen. Shawn Mitchell, R-Broomfield, was one of the most outspoken opponents of the legislation. He declined to talk about his reasons now.

The Senate sponsor, Brandon Schaffer, D-Longmont, recalls the bill signing. A father of two came up to him, crying, and said, "You have no idea what this means to us."

"It really was amazing," Lehman says. "Families were crying, hugging each other, clapping. My own autistic son was hugging me. This was the result of a true grassroots movement."

Now, when she gets tearful phone calls from families who have learned they have an autistic child, she often has good news. If their policy is governed by Colorado law, their child`s treatment is covered.

"Before this law, your child`s physician would say, 'The bad news is that your child has autism,'" says Lehman, who has a 22-year-old autistic son of her own. "Then he`d say, 'But the good news is that it`s treatable.` And finally, he`d say, 'But the bad news is you can`t afford that treatment.'"



IACC on Seclusion & Restraint

This week, the Interagency Autism Coordinating Committee's safety and services subcommittees had a joint meeting on seclusion and restraint. IACC has posted the full video of the meeting. Among those who spoke at the meeting was Alexa Posny of the US Department of Education. Disability Scoop reports:

Alexa Posny, the Education Department’s top special education official, told a federal autism advisory committee Thursday morning that her agency will issue guidance to schools this fall around the same time it releases the first ever national data on the use of restraint and seclusion in schools.

The guidance, Posny said, will be an effort to advise schools on how to handle an issue which is currently loosely regulated through a patchwork of inconsistent state and local rules.

“There are no federal regulations that exist, so it makes it very hard for us at the Department of Education to go out and say you can and can’t do this,” Posny told the safety subcommittee of the Interagency Autism Coordinating Committee. “We have no role in enforcement at this point.” (Read all of Disability Scoop’s coverage of restraint and seclusion >>)

However, through the forthcoming guidance, Posny said the Education Department will stress that every effort should be made to avoid restraint and seclusion by using positive behavior supports and other techniques. And, schools will be encouraged to have clear policies surrounding the dignified and appropriate use of restraint and seclusion in truly dangerous situations.

Here is a clip of Posny's remarks:









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Friday, May 20, 2011

California Mandate Bill

Previous posts have dealt with AB 171, the California insurance mandate bill, by Assemblyman Jim Beall.

Autism Votes is sending out an action alert:

May 20, 2011 ACTION ALERT!

If you want autism insurance reform California THIS YEAR, you have to get to work right now! We need you to make phone calls repeatedly to Speaker Perez and Assemblymember Fuentes asking them to pull AB 171 off the suspend calendar and then pass this favorably out of committee.


Let's get this done California! You don't want your kids to wait another year do you?

This is your chance so grab it.

Here is How YOU Can Help:

1) CALL ASSEMBLY LEADERSHIP AND ASK THEM TO MOVE AB 171 OFF THE SUSPEND CALENDAR.

**CALL: Speaker Perez - 916.319.2046
**CALL: Assemblymember Fuentes - 916.319.2039

Say this:

"It's time to move AB 171 off the suspend calendar for a committee vote. Thanks!"

Then lather, rinse, repeat and do it again. Light those phones up now!

2) ASK YOUR FRIENDS TO HELP BY POSTING THIS ON FACEBOOK.

"Help me get autism insurance reform for California! Call Speaker Perez at 916.319.2046 and Assemblymember Fuentes at 916.319.2039 and tell them "It's time to move AB 171 off the suspend calendar." Then write DONE below!"

Working together we can achieve this in the state of California this year. But it will take everyone participating and letting your legislators know that your family really wants this.

To learn more about California Autism Insurance Reform visit www.autismvotes.org/California.

Happy Dialing!

Shelley Hendrix
Director, State Based Advocacy
Autism Speaks

and

Kristin Jacobson
State Advocacy Chair, California
Autism Speaks

More Problems for the Geiers

Problems mount for the Geiers. The Washington Post reports:

The state panel that oversees doctors in Maryland has charged a man with practicing medicine without a license just weeks after his father’s license was suspended for allegedly putting autistic children at risk.

The Maryland Board of Physicians says David Geier worked with his father, Mark Geier, at the Rockville and Owings Mills offices of Genetic Consultants of Maryland, where they used a drug therapy that autism experts say is based on junk science.

The two have built a national following of parents who believe autism is linked to mercury in vaccines, a theory discredited by mainstream medicine. The Geiers developed a treatment using Lupron, a testosterone suppressant approved for prostate cancer and ovarian fibroids. Lupron also is sometimes used in the chemical castration of sex offenders.

In children, the drug is used for “precocious puberty,” which the board said Mark Geier over-diagnosed in autistic children.

J. Steven Wise, an attorney for the Geiers, said Thursday that David Geier “categorically denies the charges.” Mark Geier has appealed his suspension.

The Baltimore Sun offers an update:

Gov. Martin O'Malley removed David A. Geier from Maryland's Commission on Autism on Friday, telling his one-time appointee in a letter that "you do not at the present time qualify to serve."

O'Malley told Geier, who has only a bachelor's degree, that he does not qualify under Maryland law to serve as a "diagnostician," the title he held on the advisory commission. The governor also cited charges brought against him this week by the Maryland Board of Physicians.

"I regret that you were not willing to withdraw from the Commission and that this action is therefore necessary," the governor said.

The Maryland Board of Physicians charged Geier this week with practicing medicine without a license while working with his father, Dr. Mark Geier. The men operate a network of clinics, two of them in Maryland, where they treat children for autism using controversial Lupron therapy.

David Geier, through his attorneys, has said he works only in an "administrative" capacity in the clinics.

Attorney J. Steven Wise, said Friday he was unaware of the governor's action until contacted by a reporter. "David Geier denies the charges of the Board of Physicians, and we look forward to a full hearing on those charges," he said.


Thursday, May 19, 2011

Massachusetts Study

Health Day reports:

More children aged 3 and younger are now being treated for autism in Massachusetts, a new study finds.

One in 129 children in Massachusetts born between 2001 and 2005 was enrolled in early intervention programs for an autism spectrum disorder by their third birthday, according to the study.

Click here to find out more!

Over the five-year period, the proportion of children aged 3 and younger getting treated rose from one in 178 among children born in 2001 to one in 108 for those born in 2005 -- a 66 percent increase.

Much of the increase in diagnosis occurred among boys, which increased by 72 percent from 2001 to 2005, compared to about 39 percent among girls, the investigators found.

The study authors said they aren't sure if the reason for the rise is because greater awareness and better availability of services means kids are getting diagnosed and into treatment sooner, or if autism itself is becoming more common.

"We are showing an increase in diagnoses in autism, and there are multiple things that could be contributing to that," said study author Dr. Susan Manning, who was a maternal and childhealth epidemiologist at the Massachusetts Department of Public Health at the time the research was conducted.

Those factors could include efforts by the state department of public health to promote early identification and referral of children with autism spectrum disorders, national efforts to promote autism screening such as the U.S. Centers for Disease Control and Prevention's "Learn the Signs, Act Early" campaign, and media coverage that's resulted in increased public awareness.

"A certain portion of the increase could be due to an actual increase in autism," Manning said.

The Massachusetts numbers, Manning noted, are comparable to estimates from the U.S. Centers for Disease Control and Prevention for older kids, which put the number of 8-year-olds with autism at one in 110, while another study found that one in 91 children aged 3 to 17 has autism. And a recent study from South Korean researchers found an estimated one in 38 South Korean children -- or 2.6 percent -- has an autism spectrum disorder.

Other experts said the study likely reflects an increase in kids under age 3 getting help for autism, not an increase in prevalence.

Researchers relied on data from birth certificates and on children enrolled in early intervention programs for autism. In 1998, Massachusetts established the Early Intervention Specialty Services Program for kids with autism, which offers free intensive programs for young children who screen positive for autism spectrum disorders.

While the screening checklist is helpful in determine who might have autism, it isn't a definitive diagnosis, said Irva Hertz-Picciotto, deputy director of the MIND Institute (MedicalInvestigation of Neurodevelopmental Disorders) at University of California, Davis.

"The paper is most useful for assessing utilization of services and health planning, and is just plain not comparable to estimates from, say the CDC's ADDM [Autism and Developmental Disabilities Monitoring] Network," Hertz-Picciotto said.

The study was released online May 16 in advance of publication in the June print issue of the journal Pediatrics.

According to background information in the article, the average age of diagnosis for autism remains at 3.5 to 5 years old.