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Monday, February 28, 2011

More on the NH Repealer

The Keene Sentinel reports:
A local Republican legislator says he is trying to undo insurance regulation passed in the last four years while Democrats were in charge.

House Bill 309, solely sponsored by John B. Hunt of Rindge, would repeal a law requiring insurance companies to pay for early intervention autism spectrum disorder treatment. The law went into effect on Jan. 1; its prime sponsor was Suzanne S. Butcher, a former Democratic representative from Keene.

Meanwhile, families and educators attended an Autism and Asperger’s Expo at Antioch University New England Saturday, where autism support advocates denounced the bill.

Kirsten M. Murphy, director of the N. H. Council on Autism Spectrum Disorders and a parent of two autistic children, said the law mandating early intervention autism therapies has further-reaching implications than simple monetary ones.

Out of all young children identified with autism spectrum disorders and treated using early intervention therapies, 47 percent will enter kindergarten at a level equivalent to their peers, and an additional 40 percent will make significant progress, according to Murphy.

Hunt said legislators could ask insurance companies to give them an idea of the new laws’ effects on premiums.

“Now that we have changed leadership, we have a rare opportunity to re-look at all these mandates and get the insurance companies to tell us how much they really do cost,” said Hunt, formerly chairman of the Commerce and Consumer Affairs Committee, which is hearing the bill.

Hunt said it was appropriate for insurance companies — the businesses regulated by these recently passed laws — to provide information that could enact the repeal of those laws. He did not think the businesses would provide inaccurate or misleading information, he said.

Sunday, February 27, 2011


A new report based on interviews and statistics concludes that children who are especially vulnerable to bullies, kids with disabilities, have few resources to deal with the problem.

The report, which includes testimonials from parents and students, provides a few heart-breaking glimpses into the taunts and terrors faced by children with a variety of exceptionalities. In one case, classmates of a boy with cerebral palsy tied the arms of his sweatshirt to a fence. They watched as he struggled to break free and put pictures of the episode on Facebook.

While 45 states have adopted laws related to bullying in the last five years, the report notes, few address the bullying of students with special needs in particular. California schools chief Tom Torlakson told the Bay Area News Group he wants to work with legislators on ways to incorporate special-needs concerns into existing anti-bullying legislation.

Michelle Diamant writes at Disability Scoop:

Concerns about potential bullying are not enough to prove that a proposed school placement is inappropriate for a student with special needs under the Individuals with Disabilities Education Act, or IDEA, a federal judge has ruled.

In a Pennsylvania case pitting the parents of a teen with autism, known in court papers as J.E., against their school district, the parents argued that the district should pay for a private placement as opposed to the large public high school the officials recommended.

Fear that J.E. would be bullied at the public school was among the reasons cited by the parents in arguing that the district proposal was inappropriate. Specifically, J.E.’s mom said that she heard students at the school talking about bullying and the parents said J.E. had been subject to bullying at a previous school.

However, in a decision reached earlier this month, U.S. District Court Judge Eduardo C. Robreno said that worries about bullying are insufficient to deem a placement inappropriate.

“J.E. may face bullying, but a fair appropriate public education does not require that the district be able to prove that a student will not face future bullying at a placement, as this is impossible,” Robreno wrote in his opinion.

Gregory Branch writes at The Santa Ana Special Education Examiner:

The judge's ruling makes clear legal sense in that, generally, potential wrongs, cannot be addressed by the courts. It takes an actual wrong for a court to rule in a party's favor. The unfortunate part of this ruling is that it places a hurdle in the path of parents who are seeking to protect their special needs child from being bullied at school.
As noted in a recent article, a new report issued by, Walk a Mile in Their Shoes, has shown special needs parents what they had both feared and suspected: their children were far more likely to be bullied than typical students at school. While understandable that a mere fear of bullying is insufficient to trigger a school placement decision, here, during a parent visit, the students in the class were actually discussing their concerns about bullying on the campus.
If you are the parent of a special needs child, please know that your child has rights, but in this case those rights are no different than any other child. Every students has a right to go to school free of bullying and torment. Please do not hesitate to assertively take action if you are aware that your child has been bullied. Every school and its personnel has a responsibility to make sure that your child is safe at school.

Saturday, February 26, 2011

Vaccine Items

Editorial in The Boston Globe:

The measles outbreak at a Back Bay office building this week is a reminder that the disease is still a threat. Fortunately, a simple immunization can prevent its spread. Now that the only study linking autism and childhood vaccination has been thoroughly discredited, parents can rest easy when protecting their children against a potentially fatal disease.

The Age of Autism reports on reaction to the Bill Gates comment and the Bruesewitz decision:

On Thursday, vaccine safety advocates responded passionately but respectfully to these events. Advocates from the tri-state area gathered in front of Microsoft’s executive offices in New York City for a press conference. The advocates demanded an apology from Gates and decried the majority opinion in the Supreme Court’s Bruesewitz v. Wyeth decision. Media filming the event included CNN, local CBS and ABC affiliates, and LNS.

Time has an interview with Dr. Paul Offit:

Because vaccination is required, it's one of these places where medicine and government intersect. How much of the reaction to vaccines is government distrust, and how much is medical distrust?

When you combine the nature of the act, which is violent, and then you add to that the fact that its compulsory, that's what upsets people. The compulsory-vaccination acts in the 1850s and 1860s in England really helped solidify the first antivaccination activity. In fact, the origin of the term conscientious objector comes from refusing vaccine — not from war. When you could conscientiously object to vaccination in England in the 1890s, that's when it became the epicenter of smallpox in the United Kingdom.

At Scientific American, Dr. Valerie Jones reviews a new book:

In his new book, Tabloid Medicine: How The Internet Is Being Used to Hijack Medical Science for Fear and Profit, Robert Goldberg, PhD, explains why the Internet is a double-edged sword when it comes to health information. On the one hand, the Web can empower people with quality medical information that can help them make informed decisions. On the other hand, the Web is an unfiltered breeding ground for urban legends, fear-mongering and snake oil salesmen.

Goldberg uses case studies to expose the sinister side of health misinformation. Perhaps the most compelling example of a medical "manufactroversy" (defined as a manufactured controversy that is motivated by profit or extreme ideology to intentionally create public confusion about an issue that is not in dispute) is the anti-vaccine movement. Thanks to the efforts of corrupt scientists, personal injury lawyers, self-proclaimed medical experts, and Hollywood starlets, a false link between vaccines and autism has been promoted on a global scale via the Internet. The resulting panic, legal feeding frenzy, money-making alternative medicine sales, and reduction in childhood vaccination rates (causing countless preventable deaths), are sickening and tragic.

Thursday, February 24, 2011

Arkansas Mandate Moves Again

An earlier post dealt with the Arkansas mandate bill. One version won committee approval last week, and an amended version won approval this week. Associated Press reports:

Arkansas lawmakers advanced a bill Tuesday that would alleviate financial hardships for families struggling to pay for expensive treatments for autistic children.

Dayna Miller, a speech pathologist who once contemplated selling her own kidney so she could afford therapy for her autistic son, praised the bill as long-overdue.

"I mainly feel relieved," Miller said. "It's one more hurdle that we've made it over."

The House Public Health, Welfare and Labor Committee approved the legislation by a voice vote after the bill's sponsor, Rep. Uvalde Lindsey, amended the bill to require most health insurance companies to cover autism diagnoses and treatments for people 18 and younger. It now heads to the House for a vote.

One in 93 boys and one in 345 girls in Arkansas are autistic, according to, a web site run by autism activists.

Eye Contact Arkansas adds detail:

HB1315 went back to the House Public Health Committee today for amendments and passed easily. The new amendment added a comma and the limited coverage to age 18. (correction: only ABA has the age limit, not other services.) The cost to the state employee and teachers insurance pools are now estimated at $3.4 million a year, down from $5 million, for the new mandate.

Rep. Uvalde Lindsey and Dianna Varady spoke in favor of the bill with no one speaking against it. However, this time the Committee members Rep. Andy Mayberry and Rep. Bryan King asked extensive and direct questions about the bill.

Rep. Mayberry asked about public schools providing ABA treatment as part of federal IDEA requirements. However, Rep. Lindsey pointed out schools have an unfunded mandate for autism treatment and might come to the state legislature for additional funding.

Rep. Mayberry then asked about who can prescribe ABA treatment, to which Rep. Lindsey replied that insurance companies were allowed to have customary utilization and review "to stop charlatans prescribing or having a blank check."

More on HB 1315 here.

Mommy Tsunami in California

In Marysville, CA, The Appeal-Democrat reports:

The Mommy Tsunami walk that started Saturday in Yuba City ended Tuesday in Sacramento at the steps of the Capitol where hundreds of people protested proposed cuts to programs for the developmentally disabled.

A message in a bottle was also left for Gov. Jerry Brown.

Mary McGinnis, the 51-year-old Yuba City grandmother of Alex Acuna, 8, told the crowd about the trek that started at Raley's in Yuba City and included stops at the Walmart in Linda.

"It's been a long walk and an awesome journey," McGinnis said.

She spoke of how budget cuts threaten the Lanterman Act, the 1977 state law that provides the developmentally disabled with the right to services, allowing them to live more independent.

"It's no longer a promise," McGinnis said of the measure. "It's a bet."

KCRA has video.

See also the YouTube channel of DDSOorg.

Wednesday, February 23, 2011

Repealing the Mandate in New Hampshire?

The New Hampshire Hospital Association reports on a bill to repeal the state's autism insurance mandate:
HB 309, repealing certain insurance mandates, proposes to repeal the following services currently required to be offered by health insurance plans in New Hampshire: midwifery services; testing for bone marrow donation; early intervention therapy services; treatment for obesity; diagnosis and treatment of autism; hearing aids; and continuation of group insurance in the event of divorce or legal separation. A hearing on this bill will be held Thursday, Feb 24th in the House Commerce Committee.

I’m 55 years old, only recently diagnosed with Asperger syndrome – a form of high-functioning autism. I’m married and a former partner of a major consultancy – all without such treatment.

Lack of social skills exposed me to sexual abuse as a child, caused several episodes of extended insomnia and isolated me socially until I did learn how to practice social skills in my teens.

Denying autistic kids the skill to connect is equally cruel. It is also fiscally irresponsible. Early treatment is costly, but much less than 50 or more years of institutionalization.

I also hope the political sponsors of HB 309 will recognize that this is political suicide. Autism affects one in 70 families. And we will speak out. Forcefully.

Tuesday, February 22, 2011

Supreme Court Rules in Vaccine Case

Previoius posts (Oct 4, Oct 13, Oct 16) have dealt with Bruesewitz v. Wyeth, a case about vaccine lawsuits. The Washington Post reports:

Federal law protects pharmaceutical companies from lawsuits by parents who claim that vaccines harmed their children, the Supreme Court ruled Tuesday.

The court ruled 6 to 2 that going before a special tribunal set up by Congress is the only way parents can be compensated for the negative side effects that in rare instances accompany vaccinations.

The majority said that Congress found such a system necessary to ensure that vaccines remain readily available, and that federal regulators are in the best position to decide whether vaccines are safe and properly designed.

The National Childhood Vaccine Injury Act of 1986 "reflects a sensible choice to leave complex epidemiological judgments about vaccine design to the FDA and the National Vaccine Program rather than juries," Justice Antonin Scalia wrote, referring to the Food and Drug Administration.

Justices Sonia Sotomayor and Ruth Bader Ginsburg dissented, saying the threat of lawsuits provides an incentive for vaccine manufacturers to constantly monitor and improve their products.

The decision "leaves a regulatory vacuum in which no one - neither the FDA nor any other federal agency, nor state and federal juries - ensures that vaccine manufacturers adequately take account of scientific and technological advancements," Sotomayor wrote.

Monday, February 21, 2011

The Defense Department Funds Autism Research

At the University of Virginia, The Cavalier Daily reports:

University researchers have received a $100,000 grant from the U.S. Department of Defense to fund studies that evaluate the driving skills of teens with autism spectrum disorders, mainly Asperger’s syndrome and high-functioning autism. The co-investigators of the study, Medicine Prof. Daniel Cox and Education Prof. Ron Reeve, who is also a licensed clinical and school psychologist, hope to teach students with these disorders how to drive effectively with the use of a virtual reality simulator.


The grant supporting the research was part of the Department of Defense’s budget to help people with autism spectrum disorders. Reeve and Cox received the grant after submitting a proposal request to the department. Of the 71 applications submitted for the grant, only three proposals were funded.

“We were very fortunate,” Reeve said. “We are just excited about it and hope that we can help these kids lead more normal lives.”

Some background from Autism Speaks on the Department of Defense Autism Research Program (DoD-ARP):

The Defense Department's autism research program is funded in the U.S. Army Research, Development, Testing and Evaluation Medical Advanced Technology account. It is administered as a Congressionally Directed Medical Research Programs (CDMRP), similar to current programs for breast, prostate, and ovarian cancers. Research funded by CDMRP is peer-reviewed, and benefits from the direct input of consumer advocates, and is targeted to the most innovative, promising research in the field.

Sunday, February 20, 2011

More on IDEA Data in CA

Earlier this month, a post dealt with a KidsData report on California numbers. Left Brain/Right Brain adds further analysis:

For those who may not be able to see the graph of the IDEA data that most closely represents the K-12 age group as a percentage of the resident population, receiving special education services for the last ten years in California: Autism has steadily increased from .13% to .64%, Specific Learning Disabilities has steadily decreased from 5.64% to 4.41%, and totals for all disabilities has remained flat at about 9.2%.

If you believe there’s been an “autism epidemic”, and that special education data from California proves that the schools are overwhelmed, here are a two questions for you:

1. What has caused the decrease in Specific Learning Disabilities (a decrease that more than offsets the increase in autism)?

2. If the special education totals remain unchanged, why are the schools “overwhelmed”?

Saturday, February 19, 2011

Nailing Fake Therapists

Connecticut lawmakers and autism advocates have recently proposed a new bill to lawfully punish individuals who pose as board certified behavior analysts (BCBAs) in order to provide services to children with autism. Senate Bill 799 would make BCBA impersonation a criminal offence in Connecticut punishable by up to 5 years in prison with a fine of up to $500 per offense; in which case, each client contract would be regarded as a separate offense.
The Daily Stamford reports on legislation in Connecticut:

State lawmakers and autism advocates are proposing measures to protect autistic children from people such as Stacy Lore, the woman convicted of misrepresenting herself as an autism therapist.

On Monday, a bipartisan coalition of lawmakers, including Sen. Bob Duff, D-Norwalk; Senate Majority Leader Martin Looney, D-New Haven; and House Minority Leader Lawrence Cafero, R-Norwalk, announced legislation that would crack down on people who falsify credentials to treat children with autism. They were joined by parents and autism advocacy groups.

The proposed bill would make it illegal to falsely claim certification from the Behavior Analyst Certification Board, a Florida-based national nonprofit corporation that certifies the qualifications of professionals who have been trained and passed exams in behavior analysis and treatment for autism spectrum disorders.

WRNV (Reno) reports on a Nevada bill:

Lawmakers heard testimony on a bill that would require anyone teaching Applied Behavioral Analysis to children with autism, be licensed and certified or face criminal charges. Applied Behavioral Analysis interventions are best known for treating people with developmental disabilities most notably autism by using positive reinforcement. This bill struck a chord with parents and advocates who use this method of teaching who spoke out in opposition.

Original language indicates, anyone teaching ABA must be certified, or they could face a misdemeanor charge. Assemblyman James Ohrenschall of Las Vegas, says they do not want to make it harder for kids to get the treatment that has proven so helpful. He thinks the bill needs more work. "We're trying to get the psychology board together with the parents and providers and make sure the final version of this bill will not limit the applied behavior analysis therapist in the state."

The Commerce and Labor Committee requested the bill be worked on and the language be changed before they look at it again in the upcoming weeks. News 4 will continue to follow its progress.

Friday, February 18, 2011

Autism Speaks, Priorities, and Adults

From the Autism Speaks blog:

Autism Speaks recently declined an invitation to participate in a Dr. Oz show. In reviewing the pre-taping materials, it was clear that the program’s major focus was again on the vaccine debate, a debate that has been addressed multiple times, without resolution, and more importantly, a debate that prevents other equally important topics surrounding autism from being discussed. Last month, in a letter to the editor published by The New York Times, Autism Speaks’ Chief Science Officer Geraldine Dawson, Ph.D., said it is time now to focus our attention on the future and on the real problem: We still need answers to too many questions regarding causes and treatments for autism and we need to address the generation of a half million adolescents with autism who are about to enter adulthood without adequate supports.

WDAF in Kansas City picks up the problems of autistic adults:

Autism and the Federal Budget

OMB has put out a budget fact sheet on disabilities:

Increase Funding for the Education of Children with Disabilities. The Budget provides a $200 million increase for the Individuals with Disabilities Education Act (IDEA) State Grants to provide a high quality education and help offset State and local education costs for children with disabilities. The Budget also provides a $50 million (11 percent) increase for the IDEA Infants and Families Program to provide the youngest children a good start. In addition, a new $30 million joint pilot, Promoting Readiness of Minors in SSI (PROMISE), will develop and evaluate innovative approaches to improving outcomes of children receiving Supplemental Security Income and their families.


Expand Research into Autism Spectrum Disorders (ASD). The Budget continues to expand research, detection, treatment, and other activities related to improving the lives of individuals and families affected by ASD through increasing funding for programs at the National Institutes of Health (NIH), the Centers for Disease Control and Prevention, and the Health Resources and Services Administration. NIH will pursue comprehensive and innovative approaches to defining the genetic and environmental factors that contribute to ASD, investigate epigenomic changes in the brain, and accelerate clinical trials of novel pharmacological and behavioral interventions by 2016. NIH will continue to investigate environmental factors, early detection, and novel treatments to transform our understanding of ASD.

Thursday, February 17, 2011

North Dakota Legislation

The Jamestown [ND] Sun reports:

A proposed program to help those with autism spectrum disorder and their families unanimously passed the state Senate on Wednesday.

Senate Bill 2268 seeks to establish an autism spectrum disorder Centers of Achievement pilot program.

The bill requires the Department of Human Services to establish the pilot program in the next two years. Like Centers of Excellence in higher education, these centers would involve public-private partnerships.

Those interested in working with the state would submit an application with a plan to fund, develop and deliver skilled services to individuals with autism spectrum disorder.

The proposed regional centers would be in cities with populations of more than 10,000.


The original version of the bill required health insurance coverage for autism spectrum disorder. The bill was revamped due to concern that the Legislature would not pass it. [emphasis and link added]

Nick Gates of Dickinson, who pushed for the original bill, said the goal was to get every parent access to early and effective autism treatment for their children.

At least 23 states specifically require insurers to provide coverage for the treatment of autism, according to the National Conference of State Legislatures.

Gates expects more states will pass similar laws and sees the issue returning to the North Dakota Legislature in the future.

“We’re going to eventually need to have insurance companies help pay for it,” he said. “It’s coming. It’s going to happen.”

The Plains Daily reported on the earlier version:

Autism Speaks joins North Dakota’s autism community in calling on the legislature to pass SB 2268 and join the growing number of states that have ended healthcare discrimination against children with autism.”

Sherris Richards is the Executive Director of North Dakota Autism Connection says that she is encouraged by SB 2268. “We are definitely taking an active role in supporting this legislation.”

Richards says that it is hard to come by hard statistics of how many North Dakotans are afflicted by autism. “The spectrum is so wide from very mild to severe and there are many cases where parents are seeing symptoms but have not received a diagnosis that it is difficult to give a specific number as to how many families are affected.”

Richards is hopeful that by covering autism disorders more specific statistics will become available through insurance tracking.

Right now North Dakota Autism Connection works to educate parents, doctors and educators about the myriad of autistic disorders “We provide support and networking through education and awareness activities.”

Richards also says that she hopes better coverage for families will lead to better services across the state.

“Currently there is only one person in the state that has their ABA (Applied Behavioral Analysis) certification, and they are on the eastern side of the state. We need more people that are educated in the diagnosis and treatment of autism spectrum disorders.” [Ed. note: actually there are two people in the state with BACB certification: one in Valley City and one in Fargo.]

Moving forward Richards says that her organization will continue their efforts. “We will continue to spread education and spread hope for families that are affected.”

Wednesday, February 16, 2011

Shayan's Law

In the Tacoma News-Tribune, Joe Cunningham and Katherine George advocate an insurance mandate for Washington State:

Shayan’s Law is named for a Kirkland boy whose family went broke trying to pay for his treatment, only to watch his unmet needs worsen until public agencies finally stepped in.

The prime sponsor of the bill, state Sen. Ed Murray, knows that most families cannot afford to pay for intensive behavior intervention, which can cost $50,000 a year.

The need for Shayan’s Law is urgent. Autism treatment is much more effective if started at an early age – especially by age 3 – than after neurological systems have matured. The longer that Washington delays insurance reform, the dimmer the future becomes for thousands of afflicted children.

In recent years Washington and the nation have seen a dramatic increase in autism rates. Three to four times more boys than girls are affected. Meanwhile, families are being hit by a sour economy at a time when their children need services the most.

Loss of jobs, health care, and vital community support all compound the problem of minimal or non-existent insurance coverage. Financial challenges increase the stress of caring for an autistic child, adding to an already high divorce rate.

Microsoft, the pioneer in providing autism insurance benefits for its employees, has shown that it can be done. In other states, autism insurance reform has added only 44 to 83 cents per month to premiums.

When Shayan’s Law was heard recently by the Senate Health and Long-term Care Committee, Chairwoman Karen Keiser, D-Kent, acknowledged that there has been no groundswell of opposition from the insurance consumers of this state in the three years since Washington began considering autism parity.

The minimal costs to insurance policyholders pale in comparison to the enormous public costs of neglecting the needs of autistic children. Caring for one untreated person with autism can cost $3.2 million over a lifetime.

See Shayan's Law Facebook page.

Tuesday, February 15, 2011

Arkansas Mandate Moves

AP reports:

Speech therapist and behavior consultant Dayna Miller cried Tuesday as she told a silent group of Arkansas legislators about selling nearly everything she owned to get treatment for her autistic, 10-year-son.

Miller, who was a factory worker at the time, said her family sold possessions, took out loans and used her mother's savings. When they had used up everything they had, they learned to administer the behavioral treatment for her son Briar on their own.

Now, Briar speaks and reads clearly, plays golf and participates in a program for gifted children. Miller, 39, of Jonesboro, concluded her testimony in support of a bill that would require most health insurance plans to cover diagnosis and treatment for autism by bringing him in front of the committee.

"I am where I am because of good therapy," Briar said as many wiped away tears. "Every kid should have the same chance that I had."

After hearing from Miller and other parents of autistic children, the Public Health, Welfare and Labor Committee voted 13-4 to move the bill to the full House. Twenty-three other states have adopted some type of autism insurance measure since 2001, according to Lorri Unumb, a senior policy adviser for Autism Speaks, a national autism advocacy organization


Monday, February 14, 2011

Special Education Cuts

Education Week reports:

House Republican leaders put out a bill Friday night that would slice and dice education funding far below current levels and far below what President Barack Obama wanted in his never-enacted fiscal year 2011 budget request. (List of cuts is here.)

The measure, which would continue federal funding for rest of the fiscal year, takes aim at some programs that were previously considered untouchable, including special education spending and Pell Grants to help low-and-moderate income students pay for college. Overall it would cut $4.9 billion from the U.S. Department of Education's fiscal year 2010 budget of $63.7 billion.

... Special education, which is typically a Republican priority, would be cut by $557 million, below its $11.5 billion funding in fiscal 2010.

Disability Scoop reports:

When a local school board member met with President Barack Obama this week, he pressed for the federal government to fully fund the Individuals with Disabilities Education Act, or IDEA. The president said little in response.

The exchange took place during a White House meeting Tuesday when Edward McCormick, who serves on a school board in Poughkeepsie, N.Y. and chairs the National Black Caucus of School Board Members, encouraged the president to meet the federal government’s initial commitment to fund 40 percent of the cost of special education. Traditionally IDEA has been federally funded at less than 20 percent.

“In every community there is a need for IDEA funding and for the government to live up to its 40 percent commitment,” McCormick told Disability Scoop that he said to the president.

In response, Obama was noncommittal. “He thanked me for my comments and nodded his approval,” McCormick said.

Sunday, February 13, 2011

California Mandate Bill

The official digest of AB 171:
AB 171, as introduced, Beall. Autism spectrum disorder. (1) Existing law provides for licensing and regulation of health care service plans by the Department of Managed Health Care. A willful violation of these provisions is a crime. Existing law provides for licensing and regulation of health insurers by the Insurance Commissioner. Existing law requires health care service plan contracts and health insurance policies to provide benefits for specified conditions, including certain mental health conditions. This bill would require health care service plan contracts and health insurance policies to provide coverage for the screening, diagnosis, and treatment of autism spectrum disorders. The bill would, however, provide that no benefits are required to be provided by a health benefit plan offered through the California Health Benefit Exchange that exceed the essential health benefits required under federal law. The bill would prohibit coverage from being denied for specified reasons. Because the bill would change the definition of a crime with respect to health care service plans, it would thereby impose a state-mandated local program. (2) The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement. This bill would provide that no reimbursement is required by this act for a specified reason. Vote: majority. Appropriation: no. Fiscal committee: yes. State-mandated local program: yes.

Saturday, February 12, 2011

Colbert, the Huffington Post and the Vaccine Theory

In the Huffington Post, David Kirby writes:

Why do so many educated, successful parents still believe that the current vaccine schedule can hurt a small percentage of susceptible kids, and that some of those injuries might result in an autism spectrum disorder (ASD)? Despite all of the population studies showing no link, high-profile court cases that went against parents, insistence of omniscience by health officials and the public mauling of Andrew Wakefield, I don't think that many people around here have changed their minds.

That's because evidence of a vaccine-autism link did not come to them via a 12-year-old study published in a British medical journal, nor from Hollywood celebrities: Not very many had heard of Wakefield until recently.

Some of these parents actually keep up with the science, including a new review of autism studies in the Journal of Immunotoxicology which concludes: "Documented causes of autism include genetic mutations and/or deletions, viral infections, and encephalitis following vaccination."

Some of their evidence also comes from life -- from friends, family and business associates whose children had an adverse vaccine reaction, got sick, stopped talking and never recovered.

At Scientific American, Seth Mnookin isn't buying:

Why is it, he asks, that "so many educated, successful parents still believe that the current vaccine schedule can hurt a small percentage of susceptible kids, and that some of those injuries might result in an autism spectrum disorder (ASD)?"

One reason, of course, is that they keep reading stories that don’t acknowledge that the conclusions of hundreds of scientists who have studied data from millions of children is that there is no connection between vaccines and autism. Another is, as Kirby says, that many of these parents hear "evidence…from friends, family and business associates whose children had an adverse vaccine reaction, got sick, stopped talking and never recovered. It's a fact that many children with ASD regressed following normal development just as they were receiving multiple vaccines at regular doctor visits."

To state as fact that the children of these "friends, family and business associates" had "an adverse vaccine reaction" is irresponsible and untrue. What is true is that there are many parents who believe that their children had an adverse reaction. What is also true is that in many cases in which there is actual evidence—contemporaneous medical records, videotapes, etc.—as opposed to the anecdotes that Kirby is referring to, what parents remember occurring and what actually occurred are two different things.

At Forbes, Matthew Herper writes:

Yesterday, my colleague David Whelan asked if AOL’s $315 million purchase of the Huffington Post meant that the internet giant would start believing, as some HuffPo writers have asserted, that vaccination is linked to autism.

As a result, the Huffington Post’s Senior Health Editor, Alana B. Elias Kornfeld, called Whelan to say that her health articles are vetted by a Medical Review Board. She said:

“This has been true since HuffPost Health launched in Fall 2010 as a vertical separate from HuffPost Living where wellness coverage appeared in the past. As such, the acupuncturist referenced in Mr. Parikh’s 2009 Salon article is not the Health editor. Myself and Associate Health Editor, Meghan Neal, are both trained journalists.”


I’ve asked Kornfeld for a response, and will post it here should she reply. Update: Here is Kornfeld’s response: “Kirby’s piece doesn’t say that there is an autism link for sure, but rather that the jury’s still out. His opinion on the matter is clear: ‘I know that many people will say the vaccine issue has been thoroughly investigated and debunked. I honestly wish that were the case, but it simply is not true.’”

Update two: Kornfeld confirms this piece went through Huffington Post’s vetting process for medical articles.

Friday, February 11, 2011

California Budget Pushback

Mary Omoto writes at The California Disability Action Network:

Thousands of people with developmental disabilities, families, advocates, community-based providers, workers, regional centers and others filled to capacity the hearing room, overflow rooms, and hallways at the State Capitol for a 6 hour Senate Budget Subcommittee hearing and at a protest rally in Los Angeles – both held at the same time yesterday – in opposition to Governor Jerry Brown’s proposed $750 million reduction in State general fund spending for regional center and other developmental services.

Well over 1,000 people filled to capacity the main hearing room, balcony, overflow rooms, hallways at the State Capitol were even larger than the enormous crowds that packed a similar Assembly Budget Subcommittee hearing on February 3rd, covering the same budget issues. Many were protesting outside the State Capitol.

The lines of people wanting to testify filled both sides of the main hearing room, and then continued outside the room down the entire length of the hallway to the other end of the building (see photo above). Well over 150 people –including from people from an impromptu meeting immediate after the end of the hearing by Sen. Mark DeSaulnier, subcommittee chair, with nearly 200 advocates who were among the many who could not get into the main hearing room. The gave the senator a standing ovation when he entered the room for his willingness to meet and hear additional public comments.

The turn-out for the February 3rd and 10th budget subcommittee hearings were the largest in several years, according to State Capitol police and other security.

California Healthline reports on the hearing:

It's unclear how much will be changed from the budget proposal that axes $6 billion in health-related services, including the $1.7 billion in cuts to Medi-Cal and cutbacks in regional centers for people with developmental disabilities that were being protested yesterday.

Those regional centers were set up by passage of the Lanterman Act back in 1969, which first established the state program for the developmentally disabled, said advocate Shirley Dove.

"The proudest day in California history was when the Lanterman Act was passed," Dove said. "And the worst day in California would be watching it go."

The Los Angeles Daily News has an audio slideshow of the Van Nuys rally.

Dan Walters writes in The Sacramento Bee:

Hundreds of developmentally disabled Californians and their parents and care providers packed the Capitol on Thursday to angrily or tearfully denounce Gov. Jerry Brown's 2011-12 budget.

It was the latest outpouring of opposition to cuts in health and welfare services he says are needed to close a chronic deficit. Testifying en masse at almost daily legislative hearings, advocates for the poor, the aged and the disabled have hammered on two themes:

• Billions of dollars in service cuts would imperil recipients' lives, force them into expensive nursing homes, emergency rooms and even jail cells or, in the case of child care, make it tougher for parents to hold jobs; and

• Many cuts would run afoul of federal entitlement laws and/or court decisions and would be tied up in litigation for months, if not years.


What if Brown and legislators defy the opposition and whack safety-net services, thus impressing voters who respond by approving the tax increase, only to see the cuts later blocked in the courts?

That would obviously punch a big hole in the budget, but it would also feed suspicions that it was merely a cynical ploy to fool voters.

Mandate: A Move in WV, a Question Mark in VA

The Charleston Gazette reports:

West Virginia children with autism would have a much easier time getting treatment under legislation passed Thursday by the House of Delegates

The bill (HB2693) would make private insurance companies, the state's Public Employees Insurance Agency, and the Children's Health Insurance Program pay for a critical treatment for autism called applied behavioral analysis (ABA) therapy.

House members passed the proposal 96-1, sending it to the Senate.


For some lawmakers, the issue is also personal.

I've been giving speeches on this bill for four years," said Delegate Mark Hunt, a Kanawha County Democrat whose 10-year-old son has autism.

Delegate Ralph Rodighiero's son is 18 and was diagnosed with autism at age 5.

After the diagnosis, Rodighiero's wife quit her job as a nurse. She received training at Marshall University and then spent all her time working with their son.

"It was a financial burden, but it was what had to be done to get my child where he is today," said Rodighiero, a Logan County Democrat whose son now attends community college and works in a local movie theater.

Freshman Delegate Denise Campbell, D-Randolph, has an 8-year-old son with autism. Living in Elkins, the closest provider of ABA therapy is a 90-minute drive away, she said.

In Virginia, WSLS reports:

Gov. Bob McDonnell was noncommittal Thursday about whether he would sign a bill that mandates insurance coverage for childhood autism, but he gave strong indication that he might reject a budget amendment that spends state money on public broadcasting.

"I'm very sympathetic to the fact that one out of 151 kids in Virginia are diagnosed as autistic and that the expense and some of the heartache for families in managing that situation is difficult," McDonnell said during a briefing with the Capitol press corps.

"I'm also very concerned about mandates that drive up the cost of health care. So, I haven't made any decision on that yet," the governor added, promising his staff will do a thorough analysis of that bill and any others that reach his desk.

Thursday, February 10, 2011

Mandate Obstacles

Bloomberg Business Week reports on a West Virginia measure:

With the House of Delegates poised to vote Thursday on requiring insurance coverage for autism treatment, West Virginia officials are researching whether the long-sought proposal might run afoul of a 2002 law addressing mental health benefits.

The federal health care overhaul might also come into play, depending on whether its eventual roster of essential benefits includes applied behavioral analysis, or ABA therapy.


The 2002 law aims to put mental health coverage on par with other medical benefits. But it also allows insurers to limit benefits and take other steps when their spending on mental health exceeds 2 percent of a given plan's total costs.

"It's fair to say we think there is a question as to how this would interface and interact with mental health parity," said Fred Earley, president of Highmark Blue Cross Blue Shield West Virginia.

State Insurance Commissioner Jane Cline said Wednesday that her office is reviewing whether the pending legislation could trigger that law's cost-containment provision. Cline also said that she cannot recall any insurer invoking that provision since the law's enactment.

The federal health care overhaul, meanwhile, would be a factor if it deems ABA therapy as essential but sets a less-generous benefit than what West Virginia may require. The difference would be whether the state would qualify for federal funds to subsidize consumer insurance premiums.

"If the state adopts something that goes beyond that, that will become a cost for the state," Early said. "That's a very uncertain area right now. I don't believe there will be any guidance until at least later this year."

The Council for Affordable Health Care, an industry research group, estimates that mandating this coverage increases premiums by between 1 and 3 percent. Overseeing the state's largest private insurer, Earley considers the House's version the more prudent approach.

While 23 other states already require ABA therapy coverage, at least 17 also limit benefits.

Wednesday, February 9, 2011

Mandate Activity in VA and WV

The Richmond Times-Dispatch reports:

The Virginia Senate Tuesday approved its version of a bill designed to provide coverage for treatment of autism.

The vote was 28-11 in support of Senate Bill 1062, sponsored by Sen. Janet Howell, D-Fairfax, which now heads to the House of Delegates. The House also passed a version of a bill providing autism coverage, which now heads to the Senate.

The legislation would provide coverage for autistic children between the ages of 2 and 6 years old and cap the coverage at $35,000 a year.

The law would not apply to self-insured companies and would exempt small businesses with 50 employees or fewer, but it would cover state employees. A price guarantee would allow companies to opt out if the cost of coverage exceeds the premium by 1 percent.

Passage of the Senate bill virtually assures that legislation proposing coverage for autism will go to Gov. Bob McDonnell's desk.

Across the state line, The Charleston Gazette reports:

A group of about 30 supporters and parents of children with autism gathered at the state Capitol Complex Tuesday in support of a long-sought insurance proposal that would require West Virginia's public and private insurers to cover autism spectrum disorders.

The bipartisan bill is scheduled to go before the House of Delegates Thursday. A similar bill passed the Senate Banking and Insurance Committee on Tuesday.

"This is a medical condition and these families deserve coverage," said Delegate Barbara Fleischauer, D-Monongalia. "And we are going to do it this year."

WVNS reports:

Tuesday, February 8, 2011

Virginia Mandate Update

The News and Advance [Lynchburg, VA] reports:

A bill that would require insurance companies to provide coverage for autism survived three attempts to amend it Monday in the state Senate.

Sen. Steve Newman, R-Lynchburg, argued that SB1062 should be changed so that autism coverage would not be a mandated benefit.

Instead, Newman said, the bill should require insurance companies to offer the autism benefit to anyone who chooses to purchase it through their employer-sponsored health insurance plan.

Sen. Janet Howell, D-Fairfax County, said a package of amendments Newman proposed for the bill “may seem inoffensive, but it will render it a hollow shell.”

Howell argued that the autism bill already has a limited scope because it requires benefits only for children ages 2 through 6, and only for group-insurance plans in companies with more than 50 employees.

The Senate rejected the amendments on an unrecorded voice vote.

Sens. Frank Wagner, R-Virginia Beach, and John Watkins, R-Powhatan, also offered amendments that were rejected.

The Virginia House of Delegates included $410,000 in its budget released Sunday for a program that would require businesses to provide insurance coverage for children with autism.

Speaker Bill Howell (R), House Majority Leader Kirk Cox (R) and House Appropriations Committee staff directed the money be put in the budget even though Del. Lacey E. Putney (I-Bedford), chairman of the Appropriations Committee, was opposed.

And Putney, who voted against the autism bill Wednesday, said he was not told of the budget move beforehand.

"Do you think I know everything in the budget, honey?" he asked. "I don't know what's in a $78 billion budget...I don't know."

Howell supported the bill for the first time in a decade, upsetting some members of his caucus, who question supporting a new mandate while opposing the health care overhaul passed last year.

Del. Ben L. Cline (R-Rockbridge) proposed an amendment that would have required insurers to offer a package to businesses that included autism coverage but allowed businesses to choose not to buy it. The His amendment was defeated.

The Washington Post offers some important background on how the bill advanced:

In the beginning, several Northern Virginia families whose children have autism thought that their wrenching stories would be enough to get some help from their representatives in the General Assembly.

At town halls and rallies, through blogs and e-mails, the families conveyed the difficulty of coping with a mysterious ailment and the staggering cost of its treatment as they pleaded with lawmakers to impose mandates for insurance coverage.

But when that didn't work, the families took a new tack: They focused on the facts. They drilled lawmakers with detailed cost-benefit analyses to the state. They sometimes made explicit their threat of political action at the polls, while all along quietly working on House Speaker William J. Howell (R-Stafford), whose eventual support angered some members of his party.


"This bill is a huge step in the right direction for the state of Virginia," said Pat DiBari, president of the Virginia Autism Project, a nonprofit group that grew out of a Loudoun County summit on autism in August 2008.

Sen. Janet D. Howell (D-Fairfax), who sponsored the Senate's bill, chalked up this year's progress to "effective advocacy" that enlisted the House speaker as an ally.

"And the fact that it's an election year - it's hard to be against children and autism and their families," the senator said.


DiBari said he visited Howell multiple times in the speaker's private law offices. Champion said advocates followed Howell to town halls and other public appearances. They laid out for him the data from South Carolina, where a less restrictive autism bill costs the state about 84 cents per insurer per month and less than $1 million a year. And it didn't hurt that Howell was friendly with his counterpart in South Carolina's legislature.

Howell even received a telephone call from a former law school classmate at the University of Virginia: Bob Wright, the former chairman of NBC Universal who launched the foundation Autism Speaks after learning that one of his grandchildren had autism.

DiBari said he tried to understand Howell's position as much as he tried to convey his own. Howell was sympathetic but told DiBari that he and other advocates had to also have a grasp of the potential impact on the state budget and private businesses when the economy is still in poor shape.

In interviews, Howell said this year's bill strikes a balance between the business community and families of autistic children."I honestly can say that this was not a political consideration," Howell said. "It looked like something we could do to reach the core people that really need the help the most without having an undue burden on businesses."

The Richmond Times-Dispatch reports:

But not everyone's satisfied. Opponents, including the National Federation of Independent Business, the Virginia Chamber of Commerce and tea-party groups, say the law would be another costly health-care mandate on Virginia businesses and taxpayers.

And one of the bill's opponents, Del. Jackson H. Miller, R-Manassas, has asked Attorney General Ken Cuccinelli to determine if federal law allows the legislature to cap insurance coverage at $35,000.

At Greason's request, the House Appropriations Committee has proposed spending $1 million to cover the cost to the state, which a study by the legislature's watchdog agency, the Joint Legislative Audit and Review Commission, estimated at between $590,000 and $820,000 annually.

Americans for Prosperity, a conservative group with 80,000 members in Virginia, began making automated calls Jan. 31 opposing the bill.

"We're not selectively targeting this bill because of what it covers, we're targeting it because it's a mandate," said AFP State Director Ben Marchi. "At a time when Virginia families are cutting from their own budgets, the last thing we need to do is saddle them with increased health-care costs."

Marchi expressed bitter disappointment in Howell for his support of the bill, saying he had proved that "what liberal Democrats can't accomplish on their own, he will happily help them with."

"Frankly, I think the Republican caucus needs to look for new leadership," Marchi said.

Monday, February 7, 2011

Help After Childhood

MSNBC reports:

Many teenagers with autism stop receiving speech therapy and other needed mental and physical health care services once they leave high school, according to a new study. Graduating seniors lose access to the services they obtained through their school-based special education programs.

The loss is problematic because the need for those programs doesn't go away, said study researcher Paul Shattuck, of Washington University in St. Louis.


Shattuck and his colleagues analyzed data from questionnaires given to parents and guardians of young adults (ages 19 to 23) with autism. More than 400 parents and guardians answered questions about their children's use of four types of services after high school — mental health services, medical services, speech therapy and case management — or about the coordination of the patients' care.

The researchers found the rates of use of these services all had fallen since the students were surveyed six years earlier. Most notably, the number of students receiving speech therapy dropped from close to 75 percent to 9.1 percent. While these two estimates are not directly comparable because some of the participants discontinued the study during those six years, the results still showed a steep decline in use of services, the researchers said.

About 39 percent of the young adults did not receive any special services after high school. Teens in this group were more likely to be black and from families with low incomes.

The drop in speech therapy use may be due to cost — after students graduate, health insurance disability programs usually don't cover it, Shattuck said.

"One of the services they need the most is the one service that is essentially excluded by way of eligibility and reimbursement policies," Shattuck said.

The results are published in February issue of the journal Archives of Pediatrics & Adolescent Medicine


Sunday, February 6, 2011

California Cuts: Update

This isn't the same budget fight advocates for the disabled have encountered in recent years.

The Department of Developmental Services has seen nearly $500 million in cuts to its budget in the past couple of years.

This year, the governor is proposing to cut $750 million to the Department of Developmental Services, most of which is in unspecified cuts.

The proposal could be detrimental to service providers and Californians with disabilities, said Amy Wall, Wall, government affairs director for California Disability Services Association.

Wall was speaking to members of the Legislature and local politicians to help shed light on the impact of the cuts during the seventh annual Inland Empire Caucus legislative breakfast in Ontario.

The IEC - an advocacy network of local agencies serving more than 6,000 people with disabilities - meets with legislators in the area to address the caucus' concerns.

At the breakfast were representatives of the 12 agencies in the Inland Empire. The agencies, which partner with 700 businesses in the region, provide personal growth skills, vocational training as well as job placement services, said Wendy Rogina, president of Rancho-Cucamonga based Vocational Improvement Program, commonly known as VIP, Inc.

The hardest part of the proposed 20 percent cuts is the unknown, she said.

The California Legislative Analyst's Office suggests more specific savings:

Total expenditures for the regional center system that provides services for persons with developmental disabilities more than doubled between 1999–00 and 2009–10, leading to a series of actions by the Legislature to slow down the growth in the program. In this report, we describe and assess proposals in the Governor’s 2011–12 budget plan to achieve further cost containment in programs administered by the Department of Developmental Services (DDS), including community services. We also provide the Legislature with additional options to achieve savings in community services through expansion of the existing Family Cost Participation Program (FCPP) or through implementation of “means testing” to determine program eligibility. Either of the approaches that we recommend would help ensure the long–term sustainability of the program for those consumers with the greatest financial need for its services.

The California Disability Action Network is calling for testimony:


WHEN: 09:30 AM or upon adjournment of the Senate floor session (Senate will convene at 09:00 AM and likely adjourn by 09:30 AM.
WHAT: Hearing on Developmental Services Proposed Cuts
WHERE: State Capitol in Room 4203
CAN PUBLIC TESTIFY?: YES – very brief (can also submit written comments)


Saturday, February 5, 2011

Mandate Update

AP reports on West Virginia:

The House Finance Committee unanimously approved a bill to mandate insurance coverage for autism spectrum disorders (ASD), but the committee substitute differs significantly from the one that came out of interims and was sent to both chambers.

Committee members and bill supporters have mixed opinions of the new version of HB 2693.

As written, HB 2693 required coverage under PEIA and commercial insurance companies -- self-insured plans are exempted. It incorporated ASD treatment into the mental health statute and permitted coverage limits only if they complied with the federal Patient Protection and Affordable Care Act. Joint interim Judiciary Committee staff had said that other states have put ASD coverage in their mental health code, and it puts them on firmer footing looking ahead to federally mandated health care exchanges in 2014.

The committee substitute removes ASD from the mental health code and addresses it separately. It adds WVCHIP to the required coverage.

It also places monetary caps on Applied Behavior Analysis (ABA) -- the intensive, one-on-one therapy that is considered the only proven ASD treatment. The bill works under the assumption that children under 3 are covered under the federally subsidized Birth To Three program, which pays for some services for children with developmental delays.

There is pushback against mandates, with an assist from insurers.

The Sun Chronicle [Attleboro, MA] reports:

State Rep. Dan Winslow wants to strip away health insurance mandates to allow taxpayers to buy basic coverage in an attempt to drive down costs.

Winslow, R-Norfolk, said he has filed a bill called "Mandate Lite Health Insurance" that allows customers to buy just the coverage they want, rather than the full-blown policies the Legislature requires


If customers were able to buy only the coverage they want without the mandates, the cost of policies would decline by 25 percent, Winslow said.

However, Brian Rosman of Health Care for All said the Winslow idea has been proposed by others in the past and was found to be ineffective.

For one thing, he said, eliminating the mandated coverages would only save 3 percent to 4 percent, not the 25 percent Winslow cites, he said.

Also, basic policies without mandated coverage would weaken the concept behind pooling risks, he said.

A customer who bought a basic policy would also be unable to afford coverage if he or she did come down with one of the conditions not covered by their policy, he said.

"The mandates are really there to prevent a race to the bottom by insurance companies," he said.

Winslow said he got the 25 percent savings figure directly from insurance companies.

Norman Leahy writes at The Washington Examiner:

The Virginia General Assembly is likely to approve a new mandate on health insurers to cover specialized treatment for autism. House Speaker Bill Howell, who supports the measure, believes it has been drawn narrowly enough that it won’t pose an undue burden on insurance premiums. Advocates say it will “…cost businesses less than $1 per month per autistic child…” Perhaps so. But it will still raise costs, something Virginia lawmakers have made quite a habit.

A 2010 survey health insurance mandates by the Council for Affordable Health Care [sic: Insurance] is the finds that states impose 2,156 mandates on health insurers. Virginia has 57 separate mandates for coverage – more than all its bordering states save Maryland, with 67. About half the states in the country have an autism mandate, which, by the Council’s reckoning, adds anywhere between one and three percent to premium costs.

Bill Gates v. The Vaccine Theory of Autism

The Gates Foundation supports vaccinations, and on CNN, Gates weighs in on the vaccine theory:

Well, Dr. Wakefield has been shown to have used absolutely fraudulent data. He had a financial interest in some lawsuits, he created a fake paper, the journal allowed it to run. All the other studies were done, showed no connection whatsoever again and again and again. So it's an absolute lie that has killed thousands of kids. Because the mothers who heard that lie, many of them didn't have their kids take either pertussis or measles vaccine, and their children are dead today. And so the people who go and engage in those anti-vaccine efforts -- you know, they, they kill children. It's a very sad thing, because these vaccines are important.

Friday, February 4, 2011

Autism Diagnoses in California

The KidsData program of the Lucile Packard Foundation reports on new data from California:

A few years ago, we published an issue brief, “Autism Diagnoses on the Rise,” that explored the steep climb in autism diagnoses across California. So what does the trend look like these days? About the same, it turns out. Newly released data from the California Department of Education show that the growth in special education students diagnosed with autism continues unabated, from roughly 17,500 California public school students in 2002 to nearly 60,000 in 2010.

As you dig deeper, however, some other trends emerge. First, while students with autism comprise a greater share of all special education students in California compared to roughly a decade ago (from about 3% of all special education students in ‘02 to about 9% in ‘10), numbers are on the rise for another diagnosis, too — “other health impairment.” The California Department of Education defines this as “having limited strength, vitality or alertness, due to chronic or acute health problems, such as a heart condition, tuberculosis, rheumatic fever, nephritis, asthma, sickle cell anemia, hemophilia, epilepsy, lead poisoning, leukemia, or diabetes.” Meanwhile, the percent of special education students diagnosed with a learning disability has dropped considerably, from 52% of all special education students in 2002 to 42% in 2010.

Thursday, February 3, 2011

Useful Links

The Doctoral Degrees site has a useful list of autism blogs and links.

Regional Centers and Negotiated Rates

Previous posts have dealt with problems in California's regional centers. In The Sacramento Bee, Jack Chang reports:

The state can pay wildly varying rates, up to $250,000 a year per person, to fulfill its legal obligation to care for developmentally disabled people, despite laws meant to cap the costs of such programs.

Service providers can negotiate rates higher than the caps by proving they serve clients with special needs that require extra services, such as overnight care and more medical attention.

The public, however, can't see the final amounts paid or how they were negotiated.

California distributes funding for the care of developmentally disabled people to 21 nonprofit regional centers, which aren't subject to disclosure laws regulating public agencies.

The centers don't provide the care themselves, but contract with a system of vendors for a range of services – everything from homes for people with schizophrenia to day programs where clients receive therapy and skill development training.

The state has capped the rates it pays vendors, but regional centers have increasingly allowed service providers to skirt those caps using a complex system of criteria.


"I think the majority of negotiated-rate programs I've experienced, they're not providing anything different than what a regular vendor provides," said Boyd Bradshaw, who leads a statewide coalition of 1,200 service providers.

"Our concern is that we're creating a dual system, where you have normal residential-care vendors and consumers in these homes that are basically unable to maintain their services because they're underfunded."

The state's third largest regional center, in Orange County, has avoided opening virtually any negotiated-rate homes while caring for some 17,000 people, said Executive Director Larry Landauer.

The center adds services from its regular budget when people need more care and returns to a normal service level when the need passes, he said.

"If someone has a bad couple of weeks, we add that program," Landauer said. "I prefer this model, that on a case-by-case basis, we're able to meet the person's needs."

All providers, regardless of the rates they set, will likely find themselves in the same boat this year, as the biggest-ever budget cuts to hit the regional centers loom, Landauer said.

"All I know is whatever is put in front of Orange County, we'll try to find a way to work with what we have," he said. "But it's getting harder."