California Cost-Cutting

Last Thursday, California Healthline reported:

The Lanterman Developmental Disabilities Services Act, passed in 1969, requires regional centers to pay for medically necessary treatments, including ABA therapy. Last year, in order to shift the funding burden on regional centers, the Legislature passed SB 946 -- by Sen. Darrell Steinberg (D-Sacramento) -- which required private insurers to pay for the service, saving money for the state.

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The budget plan passed by the Legislature last week prohibits regional centers from paying the copayments or deductibles for ABA therapy, except in cases of demonstrable need. Ultimately, the provision means that people with private insurance will have to pay the deductible and copay.

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State health officials said this is simply an instance of cost-cutting by the Legislature and governor.

All inquiries to state officials for this story were referred to the Department of Developmental Services, which responded with a short written statement. According to the DDS statement, if clients have trouble paying their copays, regional centers are allowed to help, depending on the clients' demonstrated financial need.

The DDS statement said, in part:

"The current budget trailer bill establishes uniform guidelines and authorizes regional centers to pay health insurance co-payments for services on behalf of lower income families or others who demonstrate hardship. Subsequent to enactment of the budget trailer bill, DDS will provide guidance to the regional centers regarding implementation of the authority to pay co-payments for low-income families or others who demonstrate hardship."

In the vernacular, this is called "means-testing."

That kind of means-testing has never been part of the Lanterman Act, according to Rick Rollens, a legislative adviser to ARCA, the Association of Regional Center Agencies.

"This is an historic shift in the Lanterman Act," Rollens said. "It's a major shift. It's the first time when a major service provision is now being means-tested. Historically, this has not been an issue."

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The question of payment for ABA therapy in the regional centers is just one of several recent changes in autism coverage in California.

• The proposal to include ABA therapy as a benefit under the federally funded optional Medi-Cal expansion starting in 2014 was dropped.
• In their May budget proposal, state lawmakers allocated $50 million (or $100 million, if the federal matching money is considered) for one fiscal year of ABA therapy for Medi-Cal patients, which would have begun in July 2013. That provision was struck from the budget trailer bill in June.
• In 2009, the state eliminated funding for the Early Start program that affected about 17,000 developmentally delayed and at-risk children, including many kids who had early signs of autism, according to Jacobson.
• In September 2012, the state passed SB 946, requiring private insurers to pay for ABA treatment. The bill also provided for ABA therapy for children in the Healthy Families program. An estimated 10,000 of the 860,000 children in Healthy Families may have qualified for ABA therapy. But shortly after SB 946 passed, the state announced it was eliminating the Healthy Families program and moving those children to Medi-Cal managed care plans.

State health officials at the time assured lawmakers that there would be no gaps in continuity of care and that benefits would follow the children, but that has turned out not to be the case for an estimated 500 Healthy Families children who started to receive ABA therapy. Those children have been referred to the regional centers, and an estimated three-fourths of them are expected to fail to qualify for ABA therapy at the centers.

Interns With ASD

Autism Speaks reports:

Through an innovative program launched four years ago by Rep. Gregg Harper (R-MS), interns with developmental disabilities have been placed in Congressional offices to perform staff work while rubbing elbows with the nation's top elected officials. In the process, they are helping change attitudes among key decisionmakers about what people with developmental disabilities can do in the workplace.

The program has proven so successful that House Speaker John Boehner (R-OH) has just brought in two interns with disabilities to work in his personal office and the Majority leadership office, according to Salley Wood, deputy staff director for the Committee on House Administration, which manages the internship program.

Harper, whose son Livingston was diagnosed with Fragile X at age 4, started the program after visiting George Mason University's Mason LIFE program shortly after being elected to Congress. Mason LIFE has provided 47 interns who have worked with 66 Congressional offices. About 40 percent of the interns have autism, said Dr. Heidi Graff, the program director.

New York Legislature Fixes Cuomo Administrative Rule

In New York, WNBC-TV reports:

View more videos at: http://nbcnewyork.com.

After NBC 4 New York's I-Team report in March revealing that health insurers were denying coverage to autistic children, New York lawmakers have approved a reform that would force insurance companies to pay up.

The bill, passed by both the New York state Senate and Assembly, demands insurers cover a key autism therapy called Applied Behavior Analysis, or ABA.

Back in March, the I-Team revealed an administrative loophole that rendered Gov. Andrew Cuomo’s landmark autism insurance law much less generous than many parents expected. The rule allowed insurance firms to deny reimbursements if an ABA provider doesn’t hold a state license.

The problem is, New York state doesn’t offer a license specifically for behavior analysts.
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After the I-Team report revealed the imbalance, State Sen. Charles J. Fuschillo, Jr. (R-Merrick) proposed a law that would establish a new license, specifically for behavior analysts. With such a license in place, insurance companies would have no grounds to deny coverage for autistic kids.

After his reform bill passed on Monday, Fuschillo issued a statement denouncing the last minute administrative rule which limited the original legislation’s impact.

“New York’s autism insurance reform law was authored to prevent families from having to spend tens of thousands of dollars out of pocket on treatments and therapies for their loved ones with autism," Fuschillo said. "Unfortunately, regulations were implemented contrary to the law’s intent which prevent many families from receiving these benefits."

Air Pollution and Autism: New Study

Previous posts have discussed possible links between pollution and autism. Environmental Health News reports on a new study:

Women who live in areas with polluted air are up to twice as likely to have an autistic child than those living in communities with cleaner air, according to a new study published today.

Babies born in areas of the United States with high airborne levels of mercury, diesel exhaust, lead, manganese, nickel and methylene chloride were more likely to have autism than those in areas with lower pollution. The strongest links were for diesel exhaust and mercury.Building on two smaller, regional studies, the Harvard University research is the first to link air pollution nationwide with autism. It also is the first to suggest that baby boys may be more at risk for autism disorders when their mothers breathe polluted air during pregnancy.

“The striking similarity with our results and the previous studies adds a tremendous amount to the weight of evidence that pollutants in the air might be causing autism in children,” said Andrea Roberts, a research associate at the Harvard University School of Public Health and lead author of the new study published online in Environmental Health Perspectives.

Scientists have been trying to figure out whether a variety of environmental exposures are linked to autism, a neurological disorder diagnosed in one out of every 50 U.S. children between the ages of 6 and 17.

Because the new air pollution study has some weaknesses, however, its findings, while interesting, are not conclusive, several scientists said. For example, the researchers estimated the mothers’ exposure to air pollutants based on computer models.

“It’s the same weakness as other studies [on environmental pollutants and autism]. They’re using an EPA model, which estimates what’s coming out of factories and traffic and spits out a pollution estimate,” said Amy Kalkbrenner, an assistant professor of epidemiology at the University of Wisconsin-Milwaukee, who was not involved in this study.

Also pollution varies by season and “pregnant women don’t just sit inside a census tract,” said Kalkbrenner, who conducted a similar, smaller study in 2010.

In addition, the results may be skewed because children in urban areas have more access to doctors and clinics where they are more likely to be diagnosed, said Irva Hertz-Picciotto, an environmental epidemiologist at the University of California, Davis, who studies autism.

Also note trends:

Lead:


Mercury:

Race, Ethnicity, and Treatment of

Many posts have dealt with race and ethnicity. Others have discussed co-occurring or comorbid health conditions. Sarabeth Broder-Fingert and colleagues have an article in Pediatrics titled "Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism."  From the abstract:

We identified 3615 patients (2935 white, 243 Hispanic, 188 African American, and 249 other). The most striking differences were in use of gastroenterology (GI)/nutrition services. Nonwhite children were less likely to use GI/nutrition specialty providers (African American, odds ratio = 0.32 [95th percentile confidence interval: 0.18–0.55]; Hispanic, 0.32 [0.20–0.51]; other, 0.56 [0.34–0.92]) as well as neurology (African American, 0.52 [0.33–0.83]; Hispanic, 0.40 [0.27–0.59]) and psychiatry/psychology (African American, 0.44 [0.27–0.72]; Hispanic, 0.60 [0.41–0.88]; other, 0.62 [0.38–0.99]). Nonwhite children were less likely to have had GI studies: colonoscopy (African American, 0.23 [0.10–0.53]; Hispanic, 0.26 [0.14–0.50]), endoscopy (African American, 0.31 [0.16–0.58]; Hispanic, 0.27 [0.16–0.46]; other, 0.53 [0.31–0.90]), and stool studies (African American, 0.49 [0.30–0.91]). Hispanic children had lower rates of neurologic and other testing: EEG (Hispanic, 0.53 [0.35–0.78]), brain MRI (African American, 0.37 [0.22–0.63]; Hispanic, 0.62 [0.42–0.90]), sleep study (Hispanic, 0.18 [0.04–0.76]), and neuropsychiatric testing (Hispanic, 0.55 [0.32–0.96]).


CONCLUSIONS: We found racial and ethnic differences among children diagnosed with autism in use of care and procedures. Possible explanations for these findings include differences in presentation, referral rates, or referral follow through.

 Dr.  Arshya Vahabzadeh comments at CNN:

The exact reasons behind these findings remain unclear. One explanation may be that minority families face greater barriers in accessing specialist services. Lower numbers of local specialists, transportation issues, and lack of a regular health care provider have all been identified as problems for minority children.

Additionally. minority families may have beliefs that lead to the use of non-traditional services, or attribution of a child’s symptoms to non-medical causes. Even when obtaining referral to a specialist, children from minority families can face challenges in maintaining regular follow-up.

Another issue that remains to be clarified is whether the symptoms of autism are the same across racial and ethnic groups. Some evidence suggests that there may well be differences. For instance, one study has shown that children from minority groups may have more co-occurring symptoms of aggression. If aggression becomes the dominant issue during consultations, then other medical issues may be missed, and opportunities for specialist referral lost.

One final possibility is that children from white families are being referred too frequently to specialists, with subsequent unnecessary medical investigation. This could certainly be a problem given the lack of standardized guidance on how to treat and assess medically complex symptoms in children with autism.

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This study adds to the body of research showing race and ethnicity as being important factors in the diagnosis and treatment of autism. Studies conducted during the last decade have consistently noted that children from minority groups face substantial delays in obtaining an autism diagnosis.

African-American children in particular are more likely to be initially misdiagnosed, and face an average delay in autism diagnosis of 18 months compared to their white peers. Some have suggested that while white children may be diagnosed with autism when they have mild to moderate symptoms, African-American children tend to be diagnosed when they have severe symptoms, with milder cases going undetected.

Texas Lifts Age Cap

Autism Speaks reports:

Gov. Rick Perry has signed a bill expanding autism insurance benefits in Texas by eliminating any age caps for state-regulated health plans. In 2007, Perry signed legislation that made Texas just the third state nationally to enact autism insurance reform, then in 2009 signed another bill that raised the age cap from 5 to 9.

The new law eliminates the age 9 cap, but limits annual ABA benefits to $36,000 a year for children aged 10 and above. Under current law, state-regulated health plans are required to cover the diagnosis and treatment of autism, including behavioral health treatment, such as Applied Behavior Analysis (ABA), as well as speech, occupational and physical therapy.

Perry signed the bill without comment at the conclusion of the state's regular legislative session.

Sponsored by Senators Kirk Watson of Austin, Wendy Davis of Forth Worth and Eddie Lucio, Jr. of Brownsville, SB.1484 will take effect in September. To qualify for the extended coverage, children must be diagnosed with autism by the age of 10 to gain the coverage.

Easter Seals Apology

In the world of autism, terminology is controversial.  The Age of Autism is displaying  a recent email from Easter Seals:

TRICARE Amendment Passes House

A Thursday release from Rep. John Larson (D-CT):

Today Congressman John B. Larson announced the passage of an amendment to require TRICARE, the military healthcare program, to cover behavioral health treatment, including applied behavior analysis for military children with developmental disabilities. The amendment, authored by Congressman Larson and co-sponsored by Congressman Tom Rooney (R-FL), comes as a result of a meeting at an Autism Speaks forum at the home of Tim Shea of West Hartford with Manchester resident Rachel Kenyon. Wife of Command Sergeant Major William Kenyon, Rachel made her case and that of all military families who have dealt with difficulties with TRICARE, which currently limits access to behavioral health treatment.
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Larson has repeatedly called on Congress to institute a permanent fix to TRICARE for military children. Previously, Larson introduced the Caring for Military Kids with Autism Act (H.R. 2288) in the 112th Congress. That bipartisan bill, which would have required permanent coverage under TRICARE basic of ABA treatments, passed both the House and Senate as an amendment to the National Defense Authorization ACT (NDAA) of 2013. In a limited victory for military families, the conference report for the NDAA created a one-year-pilot program allowing military children with autism to receive greater access to ABA under TRICARE. Today's amendment would institute a permanent solution for military children with developmental disabilities.

Applied behavior analysis (ABA) is proven to greatly help children with developmental disabilities, particularly those who have an autism spectrum disorder (ASD) diagnosis. Today, access to ABA is limited by an annual dollar cap on coverage and is not adequately available to children of military retirees with TRICARE coverage.

Adult Services in Pennsylvania

In Hanover, Pennsylvania, The Evening Sun reports on an autism mom who tried to start an adult autism transition center but found that it was harder than opening one for children.

In Pennsylvania, the only two state-funded programs for autistic individuals over 21 are the Adult Autism Waiver and the Adult Community Autism Program. Collectively, the two only helped 456 autistic adults in 2012. This is compared to the overall adult autism population in Pennsylvania, which according to the Pennsylvania Department of Public Welfare is about 7,000.

Compared to the rest of the country, the fact that the bureau even has these services is groundbreaking. Pennsylvania's Bureau of Autism Services was the first of its kind in the nation and its unique adult programming is only four years old.

One of these programs, the Adult Autism Waiver, pays for individuals to join programs that provide job training, life-skills instruction, and aid individuals with challenging behavior. Unfortunately the list of interested applicants already has 1,000 names on it and even with the additional $1.5 million in funding that Gov. Tom Corbett is promising in his 2013-2014 budget, the waiver will only be able to help an added 118 individuals.

This is particularly striking considering the rate of growth within the adult autism community in the state over the past few years. From 2005 to 2010, there was a 179 percent increase in autistic adults, and that number is expected to increase by 1,292 percent by 2020, according to the Department of Public Welfare.
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A statewide survey of autistic individuals and their caretakers found this lack of adult services to be chronic. More than one in four adults with autism reported that they needed, but were not receiving vocational training, career counseling or supported employment and more than 50 percent reported an unmet need for mental and emotional health services in general.

This lack of services seems to be translating into actual negative outcomes for autistic adults. The survey also found that two thirds of them are unemployed.

California Budget Deletes Money for ABA

At HealthyCal.org, Dan Weintraub provides an update on California's transition from Healthy Families to Medi-Cal.

When the state decided to transition low-income kids from state-subsidized private insurance — known as Healthy Families –to the state-run Medi-Cal program, families of children with autism were promised that their kids’ treatment would not suffer. But those families soon learned that one especially promising (but expensive) form of treatment was not going to be covered by Medi-Cal.

Since then, those families and other supporters of autism treatment have been lobbying the Legislature to require Medi-Cal to cover the treatment, known as Applied Behavior Analysis. State senators added $50 million to the proposed budget to pay for the treatment for the coming year. But the latest version of the budget approved by budget-writing conference committee deleted that money.

The cut was especially hard to take because state regulators and the Legislature had already required private insurance companies to cover the therapy as part of their mental health benefits. So the state won’t do what it says the private sector must do.

“Particularly at a time when the state’s fiscal outlook is improving, it is unjust to pass a budget that continues to deprive children of medically necessary care and causes serious harm to children with autism and their families,” Jamila Iris Edwards, Northern California Director of Children’s Defense Fund-California, said in a statement e-mailed to reporters. “The State has broken its promise that no child would lose access to critical health care in the Healthy Families transition.”

Supreme Court Declines Case on IEPs

Education Week reports:

The U.S. Supreme Court on Monday declined to hear an appeal from parents who contend the New York City school system violated federal special education law when it excluded them from the decision over where their son would attend school.

The parents say they participated in the process in 2008 to develop an individualized education plan for their son, who has autism. But when it came time to assign their son to a school, the New York City school district unilaterally chose a school site and then mailed the decision to the parents as a "final notice of recommendation."

The parents, identified in court papers as R.E. and M.E., believed the assigned school did not have sufficient one-to-one teaching support for their son, so they enrolled him in private school and sought tuition reimbursement from the school district.

A federal district court sided with the parents, but a panel of the U.S. Court of Appeals for the 2nd Circuit, in New York City, ruled last year that under the federal Individuals with Disabilities Education Act, the school district "may select the specific school without the advice of parents so long as it conforms to the program offered in the IEP."

Fighting for Services

In Hanover, Pennsylvania, The Evening Sun reports on Christian Goff, an ASD student whose parents had to fight for an appropriate school placement:

He wasn't making any progress, said Christian's mother, Kim Goff. So she started talking to school officials, asking for ways to get him transferred to another school, one designed specifically for autistic students.

For six months she fought the school district, attending the litany of meetings that goes into changing the course of care for a special-needs student, and still, the district said no.

That did not stop Goff.

"Is he getting what he needs?" she said, her voice cracking in anger. "No. He is 12 and still can't read or write. He doesn't understand how to type on a keyboard."

The school district did eventually approve Goff's request, but it took a lot of fight, too much fight, Kim said.

"That's what you have to do," Goff said. "You have to fight to get your kid into the right school. It's sad, but unfortunately that's the fact."

As it turns out, there are fighters like Goff all over the country. A nationwide survey conducted by Autism Speaks in 2011 found that even among parents who are happy with their autistic children's education, 24 percent said that they had to fight to get it.

One possible barrier to getting this specified level of education is cost.

In the South Western School District, it costs about $20,000 more per year to educate an autistic child in an LIU classroom than it does to educate a typical student, said the district's business administrator, Jeff Mummert.

When recent statewide budget cuts to education are also thrown into the picture, it's clear that school districts are feeling the squeeze. State funding for special education has not increased in the past four years, despite the fact that costs continue to rise, Mummert said.

School officials insist that, by law, they are required to pay for special education and that the district obeys those laws. They also explain that the drive to keep special-needs students within the public school system is purely for educational reasons and is not motivated by monetary factors.

RFK, Jr.

At Slate, Laura Hellmuth recounts an conversation with Robert F. Kennedy, Jr., who has long argued that vaccines cause autism:

For a guy whose family has such a distinguished record of public service, Kennedy says some pretty awful things about government employees: “The lies that you are hearing and printing from the CDC are things that should be investigated.” He spoke to one scientist (he named her but I won’t spread the defamation) who, he said, “was actually very honest. She said it’s not safe. She said we know it destroys their brains.”

I asked the scientist about their conversation. She said there is in fact no evidence that thimerosal destroys children’s brains, and that she never said that it did.
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A scientist told him about the changes in diagnostic criteria, but “I knew that that was not true, because I spent my life working with people with intellectual disabilities. My family started the Special Olympics. I worked at Camp Shriver from when I was 8 years old. … I saw every kind of mental disability, but I had never seen autistic. I didn’t know what autism was until I saw Rain Man.”
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A cover-up of such proportions might sound like Pulitzer bait, but he says journalists aren’t pursuing the story because we won’t read scientific papers. (Phil Plait and I both have science Ph.D.s.) As RFK Jr. explained, “journalists get their information from government officials who are saying there’s no problem. Not one of them has picked up the multitude of studies that say thimerosal is the most potent brain killer imaginable.” When RFK Jr. challenged the university scientist about a study of the biological activity of thimerosal in vitro, which “everybody accepts because journalists hadn’t read it,” the scientist said, “ ‘Oh, yeah, you’re right about that.’ He backpedaled.” That’s because “now he was dealing with somebody who wasn’t afraid to read science.”

I talked to the scientist, who would prefer I not use his name because he gets death threats from unhinged anti-vaxxers. He said, “Kennedy completely misrepresented everything I said.”