Friday, September 30, 2011

Parent Activism and the Origins of the Combating Autism Act

The Asbury Park Press spotlights Bobbie and Bill Gallagher, parent activists from Brick, NJ, who persuaded policymakers to put more money into autism research. Yesterday, they had a meeting with Rep. Chris Smith (R-NY) to celebrate the passage of CARA.
The Gallaghers have been leading advocates for increased autism research. Two of their three children – Austin, 20, and Alanna, 19 – were diagnosed with autism.

“The prevalence in 1991 was more like 5 in 10,000,” said Bobbie Gallagher, a Brick resident for 23 years. “Now in New Jersey, we’re looking at 1 in 94. So, we’ve come a long way since Alanna was diagnosed.”
...

The seeds of the autism bill were planted more than 14 years ago, in the same office in which Thursday’s meeting took place.
It stemmed from a letter mailed by the Gallaghers to Smith regarding the disproportionate number of autistic children in the Brick region. That letter sparked Smith’s interest in the topic.
"Really, Billy and Bobbie Gallagher had already done the research when they came in to see me,” recalled Smith. “We sat around the table right here for three hours.”

Their research sparked Smith’s interest and he began investigating.

In 2001, Smith organized and formed CARE, and efforts to increase autism research and awareness intensified.

That began a three-year quest to get the Combating Autism Act passed. Smith and CARE enlisted the help of legislators on both sides of the aisle, scientific researchers and even B.J. Surhoff, a prominent Major League Baseball player who had a son with autism.

Los Angeles Times Editorial

In an editorial, The Los Angeles Times urges Governor Brown to sign the California insurance mandate:

Researchers have found that a person's brain makes crucial internal connections partly in response to genetics and partly in response to interactions with the environment. Autistic children don't interact in the usual way, so their brains don't make the proper connections. Applied behavioral analysis attempts to provide the interactions they'd been missing, encouraging their brains to adapt and make the right connections. Studies have shown that these techniques can help autistic individuals of any age, for example by teaching them to communicate effectively. And when preschoolers receive an intense program of applied behavioral analysis, they may make so much progress that they no longer need special education classes.

The therapy is offered to preschoolers by regional centers for the developmentally disabled, which are jointly funded by the state and federal governments. But the regional centers treat only the most severely disabled, leaving many parents to come up with the tens of thousands of dollars needed to pay for private care. Those who can't must rely on the special education classes provided by increasingly strained school districts.
The editorial is well-intentioned but is not quite accurate in describing what regional centers do. Regional centers provide some services after the preschool years -- indeed, through adulthood. In practice, however, many families have contended that the services are inadequate.

Los Angeles Families for Effective Autism Treatment has a more comprehensive explanation:

School districts and regional centers are required by law to provide services for individuals with developmental disabilities, including autism. Under the Individuals with Disabilities Education Act (IDEA), with a few exceptions, regional centers have the responsibility for providing needed supports and services to qualified children until they are three years old. At that time, the school districts assume primary responsibility for providing educational supports and services for disabled children until they complete their schooling. At that time, regional centers resume primary responsibility.

If your child is under age 3, the Regional Center is responsible for providing services through the “Early Start” program. This program is mandated under the Individuals with Disabilities Education Act (IDEA). The California legislature has found that early intervention services “represent an investment of resources, in that these services reduce the ultimate costs to our society, by minimizing the need for special education and related services in later school years and by minimizing the likelihood of institutionalization.” The Legislature has recognized that time is of the essence in that "[t]he earlier intervention is started, the greater is the ultimate cost-effectiveness and the higher is the educational attainment and quality of life achieved by children with disabilities." Regional Centers are required to provide services to infants and toddlers with developmental delays in one or more of these five areas: cognitive development; physical and motor development, including vision and hearing; communication development; social or emotional development; or adaptive development. Regional Centers also provide services to children who have conditions that have harmful developmental consequences, or have a high risk of developmental disability. The regional center is required to determine a child’s eligibility for services by conducting an assessment by a multi-disciplinary team of qualified individuals. Services provided through the Early Start program include special instruction, speech therapy, occupational therapy, physical therapy, respite and other services, depending on the child’s needs.

If your child is over the age of 3, both the school district and the regional center have a responsibility to provide services. School districts are required to provide a “Free Appropriate Public Education,” also called FAPE, which is required under the Individuals with Disabilities Education Act (IDEA). School districts must provide specialized instruction and related services without charge. The services must address all of the child’s special education and related service needs, and must be based on the individual needs of the child and not on the child’s disability. Generally speaking, school districts must provide a “floor of opportunity” in which the child may obtain “meaningful educational benefit.” School districts are not required to provide the best possible educational program. Special education law also requires that a student be educated in the least restrictive environment (LRE) and that removal of a student from the regular education environment occur only when the nature or severity of the student’s disability is such that education in regular education classes cannot be achieved satisfactorily. In 2004, IDEA was amended significantly and passed into law. Many of the provisions in this new IDEA law will become effective on July 1, 2005.

Regional Centers provide services to individuals with developmental disabilities under California’s Lanterman Developmental Disabilities Act. The Lanterman Act requires regional centers to provide developmentally disabled people with those services and supports that will allow them, “regardless of age or degree of disability, and at each stage of life” to integrate “into the mainstream life of the community” and to “approximate the pattern of everyday living available to people without disabilities of the same age.” The Act also states that persons with developmental disabilities have the right to treatment and habilitation services and supports which foster the individual’s developmental potential and are “directed toward the achievement of the most independent, productive and normal lives possible.” The Act contemplates that the regional centers will work with consumers and their families to secure “those services and supports that maximize opportunities and choices for living, working, learning and recreating in the community.” It is possible for a school district to provide a child a FAPE without providing those supports and services required for them to meet the Lanterman standards. In such a case, regional centers are to meet those unmet needs. However, parents must make a good faith effort to obtain those services and supports from their school district before the regional center is required to provide them. Further, regional centers have a responsibility to advocate for services from the school district and any other potential “generic” funding sources.

Thursday, September 29, 2011

Regional Center First Responders

Laura Shumaker writes at The San Francisco Chronicle about those who work for California's regional centers:

I will never forget the first time a case worker from the Regional Center of the East Bay came to visit.

Her name was Iris.

Matthew was 3 years old, and while he hadn’t yet been diagnosed with autism, his I.Q. scores were low, so he qualified for a range of services, including as remedial preschool(now called early intervention) and speech therapy.

I told the case worker that I didn’t believe that Matthew would need services for long. I was determined to fix him.

“That’s great,” said Iris, “but let me tell you how we can help.”

Iris spent the next few hours asking me questions, translating my optimistic answers, and offering me the kind of support that I didn’t know I needed. As she got up to leave, I said “What ever they pay you, it’s not enough.”

“I don’t do this for the money,” she said with a smile, “I do it for the kids.”

Friday Rally for CA Mandate

There was a rally for the CA mandate on Monday. Another takes place tomorrow. Rachel Trachten writes in The Examiner:

State Senator Darrell Steinberg will host a rally in Berkeley this Friday, September 30, in support of his bill requiring insurance companies to cover behavioral health treatment for children and adults with autism.

The bill, SB 946, has passed both the California Assembly and Senate and is awaiting Governor Brown's signature. Similar legislation has already been enacted by 27 other states. For more info on autism treatment options, click here.

Rally in support of insurance coverage for autism treatment:

  • Date: Friday, Sept. 30
  • Time: 11: 00 am
  • Location: The Ed Roberts Campus (inside atrium); 3075 Adeline Street; Berkeley, CA 94703
  • The building is easily accessible from the Ashby BART station. If you drive, don't park in the BART parking lot or you may get a ticket. Street parking is available and there's a garage under the building with an entrance on Woolsey Street.

Vinegar and Aversives

A press release from the National Autism Association:

Monday night, in an effort to demonstrate inhumane practices known as "aversives" happening in special-ed classrooms across the county, school district officials in Texas were asked to insert vinegar-soaked cotton balls into their mouths. The request came from advocate and NAA board member Leslie Phillips following multiple reports from local parents who say their children attending Exley Elementary school in Katy were force-fed cotton balls soaked with vinegar as a form of discipline. "There were no takers to the request," said Phillips.

According to parents, Exley students, some of whom are nonverbal, were sometimes forced to get on a classroom treadmill, ostensibly there for exercise breaks and forced to go faster or longer than they wanted. In addition, cotton balls saturated with vinegar were placed into their mouths to control behavior. Parents say they were told certain "procedures" had been used on their children without their knowledge or consent, and the district would address the issue. Exley Elementary School Principal Imelda Medrano used only vague references, saying, "a treadmill was used" and "vinegar was introduced."

Parents Carol and Bill Rutar said they were dumbfounded to learn these strategies were not illegal. "If I were to attempt to force an adult to do something like this, I would be arrested and charged with assault and battery. Further, if this happened to a student in a general education setting, there would be public outrage. It's precisely the type of bullying behavior between students that is the focus of national attention and expressly prohibited," said Carol Rutar.

Parents still await information from the investigation, conducted by the district's own police department who has confirmed the matter has been handed over to the District Attorney.


Wednesday, September 28, 2011

NIH Workshop

Research into genetics and other areas raises difficult questions. On Monday, the National Institutes of Health held a workshop on the ethical, legal, and social implications of autism research. Conference materials include the following:

Documents

Articles

Early autism detection: Are we ready for routine screening?
Al-Qabandi M, Gorter JW, Rosenbaum P. Early autism detection: Are we ready for routine screening? Pediatrics. 2011 Jul;128(1):e211-7. [Full text] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 21669896]

Response letter:
Why it is important that screening for autism be provided in routine pediatric care. Response letter to: Early autism detection: Are we ready for routine screening? Dawson G, Fein D, Rogers S, Zwaigenbaum L. Pediatrics. Published online 2011 Jun 16. [Full text] This link exits the Interagency Autism Coordinating Committee Web site
Should all children be screened for autism spectrum disorders?
American Family Physician Editorials: Controversies in Family Medicine. Should all children be screened for autism spectrum disorders?
  • Lipkin PH, Hyman SL. Yes: merging science, policy, and practice. Am Fam Physician. 2011 Aug 15;84(4):361-7. [Full text] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 21842783]
  • Campos-Outcalt D. No: screening is not ready for prime time. Am Fam Physician. 2011 Aug 15;84(4):377-8. [Full text] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 21842784]
Ethical and social implications of genetic testing for communication disorders
Arnos KS. Ethical and social implications of genetic testing for communication disorders. J Commun Disord. 2008 Sep-Oct;41(5):444-457. [PMID: 18452941]

Please note that this article is published in a journal with access to subscribers only. To purchase a copy of this article, please click on the "purchase" button on this webpage.This link exits the Interagency Autism Coordinating Committee Web site
Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues
Bailey DB Jr, Skinner D, Davis AM, Whitmarsh I, Powell, C. Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues. Pediatrics. 2008 Mar;121(3);e693-704. [Full text] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 18310190]
Copy-number variations associated with neuropsychiatric conditions
Cook EH Jr, Scherer SW. Copy-number variations associated with neuropsychiatric conditions. Nature. 2008 Oct 16;455(7215):919-23. [PMID: 18923514]

Please note that this article is published in a journal with access to subscribers only. To purchase a copy of this article, please click on the "Register now" button on this webpage.This link exits the Interagency Autism Coordinating Committee Web site
Genetic testing for autism predisposition: Ethical, legal and social challenges
Marchant GE, Robert JS. Genetic testing for autism predisposition: Ethical, legal and social challenges. Houston Journal of Health Law & Policy. 2009 9(2):203-35. [Full text] This link exits the Interagency Autism Coordinating Committee Web site
What is a meaningful result? Disclosing the results of genomic research in autism to research participants
Miller FA, Hayeems RZ, Bytautas JP. What is a meaningful result? Disclosing the results of genomic research in autism to research participants. Eur J Hum Genet. 2010 Aug;18(8):867-71. [Full text] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 20234389]
Collaboration strategies in non-traditional CBPR partnerships: Lessons from an academic-community partnership with autistic self-advocates
Nicolaidis C, Raymaker D, McDonald K, Dern S, Ashkenazy E, Boisclair WC, Robertson S, Baggs A. Collaboration strategies in non-traditional CBPR partnerships: Lessons from an academic-community partnership with autistic self-advocates. Progress in Community Health Partnerships. 2011 5(2);143-150. [PMID: 21623016]

Please note that this article is published in a journal with access to subscribers only. For more information regarding access to this article, please contact the Johns Hopkins University Press at jrnlcirc@press.jhu.edu, 1-800-548-1784, or 410-516-6987.
Bridging autism, science and society: Moving towards an ethically-informed approach to autism research
Pellicano E, Stears M. Bridging autism, science and society: Moving towards an ethically-informed approach to autism research. Autism Res. 2011 Aug;4(4):271-82. [PMID: 21567986] Please note that this article is published in a journal with access to subscribers only. To purchase a copy of this article, please click on the "Register now" button on this webpage.This link exits the Interagency Autism Coordinating Committee Web site
Evidence-based neuroethics for neurodevelopmental disorders
Racine E, Bell E, Di Pietro NC, Wade L, Illes J. Evidence-based neuroethics for neurodevelopmental disorders. Semin Pediatr Neurol. 2011 Mar;18(1):21-5. [PMID: 21575837]

Please note that this article is published in a journal with access to subscribers only. Please note that this article is published in a journal with access to subscribers only. To purchase a copy of this article, please click on the "purchase" button on this webpage.This link exits the Interagency Autism Coordinating Committee Web site
Multiple recurrent de novo CNVs, including duplications of the 7q11.23 Williams syndrome region, are strongly associated with autism
Sanders SJ, Ercan-Sencicek AG, Hus V, Luo R, Murtha MT, Moreno-De-Luca D, Chu SH, Moreau MP, Gupta AR, Thomson SA, Mason CE, Bilguvar K, Celestino-Soper PB, Choi M, Crawford EL, Davis L, Wright NR, Dhodapkar RM, DiCola M, DiLullo NM, Fernandez TV, Fielding-Singh V, Fishman DO, Frahm S, Garagaloyan R, Goh GS, Kammela S, Klei L, Lowe JK, Lund SC, McGrew AD, Meyer KA, Moffat WJ, Murdoch JD, O'Roak BJ, Ober GT, Pottenger RS, Raubeson MJ, Song Y, Wang Q, Yaspan BL, Yu TW, Yurkiewicz IR, Beaudet AL, Cantor RM, Curland M, Grice DE, G√ľnel M, Lifton RP, Mane SM, Martin DM, Shaw CA, Sheldon M, Tischfield JA, Walsh CA, Morrow EM, Ledbetter DH, Fombonne E, Lord C, Martin CL, Brooks AI, Sutcliffe JS, Cook EH Jr, Geschwind D, Roeder K, Devlin B, State MW. Multiple recurrent de novo CNVs, including duplications of the 7q11.23 Williams syndrome region, are strongly associated with autism. Neuron. 2011 Jun 9;70(5):863-85. [Full text] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 21658581]
Risk factors for autism: translating genomic discoveries into diagnostics
Scherer SW, Dawson G. Risk factors for autism: translating genomic discoveries into diagnostics. Hum Genet. 2011 130:123-48. [Full text] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 21701786]
Understanding autism: Parents and pediatricians in historical perspective
Silverman C, Brosco JP. Understanding autism: Parents and pediatricians in historical perspective. Arch Pediatr Adolesc Med. 2007 Apr;161(4):392-8. [Full text] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 17404137]
Ethical implications of array comparative genomic hybridization in complex phenotypes: points to consider in research
Tabor HK, Cho MK. Ethical implications of array comparative genomic hybridization in complex phenotypes: points to consider in research. Genet Med, 2007 Sep;9(9):626-31. [Full text] [PMID: 17873651]
In search of biomarkers for autism: scientific, social, and ethical challenges
Walsh P, Elsabbagh M, Bolton P, Singh I. In search of biomarkers for autism: scientific, social, and ethical challenges. Nat Rev Neurosci. 2011 Sep 20;12(10):603-12. [Full text] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 21931335]
Clinical assessment and management of toddlers with suspected autism spectrum disorder: insights from studies of high-risk infants
Zwaigenbaum L, Bryson S, Lord C, Rogers S, Carter A, Carver L, Chawarska K, Constantino J, Dawson G, Dobkins K, Fein D, Iverson J, Klin A, Landa R, Messinger D, Ozonoff S, Sigman M, Stone W, Tager-Flusberg H, Yirmiya N. Clinical assessment and management of toddlers with suspected autism spectrum disorder: insights from studies of high-risk infants. Pediatrics. 2009 May;123(5):1383-91. [Full text] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 19403506]
The NeuroDevNet autism spectrum disorders demonstration project
Zwaigenbaum L, Scherer S, Szatmari P, Fombonne E, Bryson SE, Hyde K, Anognostou E, Brian J, Evans A, Hall G, Nicholas D, Roberts W, Smith I, Vaillancourt T, Volden J. The NeuroDevNet autism spectrum disorders demonstration project. Semin Pediatr Neurol. 2011 Mar;18(1):40-8. [PMID: 21575840]

Please note that this article is published in a journal with access to subscribers only. To purchase a copy of this article, please click on the "purchase" button on this webpage.This link exits the Interagency Autism Coordinating Committee Web site

Tuesday, September 27, 2011

WV Psychologist Board Backs Down

The Charleston Daily Mail reports that a West Virginia board has reversed a rule that would have taken away ABA services:

The state Board of Examiners of Psychologists voted to withdraw a controversial legislative rule change from earlier this year, citing a "misunderstanding."

The emergency rule change, approved by Secretary of State Natalie Tennant in June, required state behavior analysts to work under the supervision of licensed psychologists at all times.

Behavior analysts work with patients with emotional and mental problems, but many work with autistic children. They provide intense therapy that often helps the child overcome some of the disorder's effects.

"Behavior analysts have misinterpreted the rule to mean that it would hamper autistic children from receiving services. Apparently, they are telling parents that their autistic children will not receive services," wrote Jeffrey Harlow, executive director of the psychologists examiners board, in a press release Tuesday evening.

According to the release, parents of autistic children have called the board to express "fear and anger."

"This is a misunderstanding. The rule does not prevent services from being rendered. The last thing the board would want to do is obstruct the provision of vitally needed services to these vulnerable children," he wrote.

"The board continues to offer to meet with behavioral analysts to see if together we can resolve this issue."

He did not specify when the vote to withdraw the rule took place. Calls to Harlow's office were not immediately returned Tuesday evening.

Jill Scarbro-McLaury, a certified behavior analyst and president of Charleston's Autism Speaks chapter, filed a lawsuit in Kanawha Circuit Court last Friday against the West Virginia Board of Examiners of Psychologists.

"There was no misunderstanding here," she said. "The Psychologists' Board of Examiners broke the law.

"The lawsuit was never about psychology and behavior analysis. The lawsuit was purely about did they follow the law? The case was clear. They did not."

Insurance Mandate Rally in Sacramento

In Sacramento, there was a rally urging Gov. Brown to sign SB 946, the California mandate. San Francisco's KGO reports:
With no celebrities to champion their cause, families rallied at the Capitol to urge Brown to force health insurance companies to cover more autism treatments. But, they do have irresistible kids to help.

"Our kids' lives matter," said Feda Almaliti, a mother of a son with autism. "My child might not be Leonardo DiCaprio, but guess what? He's just as important."

"I don't know how much he's influenced by those big names, or little names, or medium-sized names or whatever. He studies these issues," said St. Sen. Darrell Steinberg, D-Sacramento.



West Virginia Psychologists Ambush ABA Providers

Economist George Stigler taught that "regulation is acquired by the industry and is designed and operated primarily for its benefit." WSAZ in West Virginia reports on an example:
An important therapy treatment for kids living with autism has been cut off due to an emergency rule passed by a state board.

The West Virginia Board of Examiners of Psychologists passed a rule in May that was enacted in July, requiring all behavior analysts to be supervised by a licensed psychologist at all times.
...

The board’s emergency rule says the people who provide ABA therapy are an “immediate threat to public safety."

The board claims they're doing the work of a psychologist without a license.

"I've worked with people with autism for about 30 years. And to suddenly find out that I'm a threat was just incredible that it should come to this," says Delayne Plata, a national board certified applied behavior analyst.

The new rule caught many people, including Plata, off guard. She says there aren't enough doctors for constant supervision to be practical, so she's stopped providing treatment.
The case also teaches a lesson: advocates for a vulnerable population have to keep close watch on government agencies. The State Journal reports:

Autism advocates are suing the Board for violating open meetings laws.

A spokesperson for the West Virginia Secretary of State's Office said the state code requires an emergency rule be passed if an emergency exists, if the agency requesting the rule has the authority to do so and if the public interest is affected.

The spokesman said the office cannot disapprove an emergency rule just because the office doesn't like the rule, and it would have gone into effect 45 days after the agency requested it even without the office's approval.

He also pointed out the rule was on the secretary of state's website more than 30 days for public comment before it was approved July 15.

Monday, September 26, 2011

CARA Passes Senate, Heads to White House

At The Record, Herb Jackson reports:

The Senate sent President Barack Obama a bill Monday night to extend federal autism programs after Sen. Bob Menendez reached an agreement with a Republican senator who had been blocking the measure.

The passage of a three-year extension of the 2006 Combating Autism Act authorizes $231 million in funding each year for research, education and services. Without an extension, Menendez, D-N.J., said there would have been no guarantee that autism research funded by the National Institutes of Health would have continued.

Menendez said he had been trying since last week to address concerns raised by Sen. Tom Coburn, R-Okla., who blocked passage of a bill that had cleared the Republican-led House unanimously.

In the final deal, Menendez and Coburn agreed to jointly request a Government Accountability Office report on whether there was any redundancy in federal spending on autism.



VIDEO UPDATE 9/27:

A Case in Atlanta

Litigation over special education can be expensive, both for families and school districts. The Atlanta Journal-Constitution reports:
When the police came, Stefan Ferrari’s teacher described Oct. 21, 2008, in her classroom for autistic children as “a regular, ordinary day.”

Perhaps it was, except for the tiny digital recorder sewn into the collar of Stefan’s shirt.

The device, planted by Stefan’s mother, collected eight hours and 19 minutes of sound, much of it the banality of yet another school day for a non-verbal 10-year-old. It also captured the teacher and her colleagues talking about sex and martinis. It picked up the teacher’s teasing Stefan after he ate pizza from the trash. And it chronicled the threat of a “be-quiet hit” to a crying child, followed by the repeated slaps of an adult’s hand against Stefan’s bottom.

That single day in an Atlanta classroom led to lawsuits in state and federal courts, to the teacher’s firing, to threats of criminal charges — against Stefan’s parents — and, finally, to what may have been the inevitable fracture of the boy’s family. Atlanta Public Schools spent $1.1 million of taxpayers’ money fighting Stefan’s family in court before agreeing this summer to pay private school tuition and therapeutic expenses into his adulthood.
...
When Stefan Ferrari’s family asked Atlanta Public Schools to pay to educate the autistic child in private schools, the district decided to respond aggressively. It turned out to be expensive:
  • $788,593: Fees the district paid through August 2011 to Jones, Cork & Miller, a Macon law firm, for the Ferrari case. The firm is expected to submit additional bills.
  • $236,523: Fees the district agreed to pay the Ferraris’ lawyer, Jonathan Zimring.
  • $38,958: Expense reimbursements to Jones, Cork & Miller, through August 2011.
  • $30,270: Payments to the district’s consultants and expert witnesses.
  • $1,094,344: TOTAL
Those expenses do not include money the district agreed to pay into a trust fund set up for Stefan Ferrari. Lawyers for the school district have indicated in court records that the Ferraris sought between $600,000 and $1 million, although those figures are unconfirmed. The district’s lawyers say a federal education privacy law requires that the settlement — even its value — be kept confidential.

Sunday, September 25, 2011

A Rally in Sacramento

Supporters of a California autism insurance mandate will rally in the state's capital tomorrow. A release from California State Senator Darrell Steinberg:
(SACRAMENTO) Parents of children with Autism Spectrum Disorder (ASD) and leading advocates will join Senate President pro Tem Darrell Steinberg (D-Sacramento) at a press conference and rally in Sacramento on Monday, September 26th, to urge Governor Brown to sign SB 946, legislation which requires private health plans and insurance companies to provide coverage of behavioral health treatment for individuals with autism.

Parents and advocates from Sacramento and throughout the state will fill the crowd with pictures of their children and signs calling on the Governor to stand with families and sign the bill. Parents will share their personal stories of being denied insurance coverage for medically necessary treatment and how SB 946 will end the discriminatory practice.

The rally will include an inspiring performance by talented musicians who are on the autism spectrum. Family support groups from around the state will have information tables set up for families looking for assistance.
Details:
  • When: Noon, Monday September 26th, 2011
  • Where: West Steps of the Capitol
Speakers:

  • Senate President pro Tem Darrell Steinberg (D-Sacramento)
  • Areva Martin, parent of a son with ASD and President of the Special Needs Network
  • Feda Almaliti, parent of a young son with ASD and Executive Director of Autism Health Advocates
  • Joan Schmidt, parent of an adult son with ASD and CEO of Creative Living Options which provides independent living support
  • Ruben Ramirez, father of young child with ASD and member of Fiesta Educativa, an organization dedicated to assisting Latino families with special needs children (remarks given in Spanish)
  • Kristin Jacobson, Founding Member Alliance of California Autism Organizations and President Autism Deserves Equal Coverage
  • Shelley Hendrix, parent of a teenage son with ASD, Director Grass Roots Development, National Autism Speaks
  • John Matthias, parent of a child with ASD, Regional Advocacy Chair Autism Speaks, and Founding Member of the Alliance of California Autism Organizations
  • Marty Omoto, Director of the California Disability Community Action Network

Saturday, September 24, 2011

Uncertain Impact of the Health Law

Phil Galewitz writes at Kaiser Health News:

Autism treatment advocates have won one legislative battle after another since 2007, most recently in California, which sent a bill to the governor this month mandating that insurers cover the disorder. Now more than half the states have such requirements, but that success could be in jeopardy as federal officials set new national standards for health coverage.

Insurers and employers argue that the laws increase health costs because treatment is often expensive and lasts years. But the advocates have prevailed by using federal data showing a growing number of children with the disorder, compelling stories about middle-class families struggling to afford treatment and testimony from celebrity parents of children with autism, including former pro football stars Dan Marino and Doug Flutie.

However, a provision in the 2010 health overhaul law gives the federal government authority to define "benefits" that will be offered on the health insurance exchanges, or marketplaces, to individuals and small businesses starting in 2014. If states mandate a benefit, but it isn’t on the federal list, the states would be responsible for the cost of the coverage.

As a result, autism benefits and dozens of other state-required benefits, covering services and conditions such as infertility, acupuncture and chiropractic care, could be at risk. By the end of September, the Institute of Medicine is scheduled to recommend criteria the Department of Health and Human Services should use in determining the essential benefits package. HHS is expected to announce its decision by the end of the year.

Followup on Followup

In The New York Times, Amy Harmon answers some letters resulting from her article on Justin Canha:

Q: I had a concern with the lack of follow-up in the system to determine the effectiveness of various interventions in the special education program. Apparently federal funding does not require this. But that is not an excuse for ignoring the need to measure impacts, in a program that uses scarce resources to help young people deal with their challenges. There is a saying in the business world: “You get what you measure.” Since there seems to be no attempt to measure, what is society getting? Or what are the challenged young adults getting from the choices that are being made for them without a systematic effort to determine results?

A: I think that’s a very valid question, one I tried to raise in the story without being too heavy-handed about it. This year, the Department of Education required states for the first time to report how many of their special education students had either worked or attended post-secondary school for at least 90 days in the year after they graduated. But there is no federal-level effort to track the relative success of the type of transition program I profiled, and few, if any, states do it either. Gathering such data is complicated, especially because of the wide range of students with disabilities served by public schools. But it seems crucial to know. Paul Wehman,director of the Rehabilitation Research and Training Center at Virginia Commonwealth University, is in the middle of conducting what I believe is the first controlled study of a community-based transition program, comparing it to the standard transition program in a local high school.

Friday, September 23, 2011

A Case in New Jersey

The Morristown Patch reports:
Moorestown School District engaged in “gamesmanship” when it tried to put hurdles in front of the parents of an autistic child who wanted the district’s help to give their son an education, according to a federal judge.

Judge Anne [sic: her name is Renee] Marie Bumb ruled last week in favor of the Duman family, who sued the district in civil court after it refused to evaluate or provide an Individual Education Plan (IEP) for their autistic son unless he was enrolled in the district, even though the law— per the Individuals with Disabilities Education Act (IDEA)—says the district must provide services to any and all disabled students as long as they reside in the district’s boundaries, according to an article in the New Jersey Law Journal.
...
After three years of legal wrangling, including an appeal by the district after an initial ruling went against them, Judge Bumb ruled in the Dumans’ favor. Bumb was highly critical of the district in her ruling, calling the district’s position “troubling” and “indefensible,” according to a case summary.

She also said the district’s requirement that the Dumans’ son be enrolled before he could be considered for special education services served no purpose other than to “circumscribe the district's IDEA obligations and create a barrier to the provision of a free and appropriate public education,” according to the law journal article.

While the case was still being litigated, the district began paying for tuition for the Dumans’ son after the two parties reached an agreement last year.

Scott Duman said their son, now 15, attends the Y.A.L.E. School in Cherry Hill, another institution for children with social and learning disabilities.

Under Bumb’s ruling, the district is responsible for reimbursing the Dumans roughly $60,000 for tuition costs at Orchard Friends, as well as attorney’s fees for the 4-year-old case.

Thursday, September 22, 2011

A Settlement in the Carey Case

The Albany Times-Union reports on the case of Jonathan Carey.

The parents of Jonathan Carey, a 13-year-old with autism who died in February 2007 at the hands of a health aide, will receive $5 million from the state to settle their wrongful death lawsuit against the the O.D. Heck Developmental Center in Niskayuna and the state Office for People with Developmental Disabilities.

Edwin Tirado was found guilty of manslaughter in October 2007 after a jury found he recklessly took the boy’s life while restraining him during an ill-fated field trip to Crossgates Mall that began at the O.D. Heck and ultimately ended with Tirado and another aide in handcuffs.

The settlement between the state and Michael and Lisa Carey was first reported by the New York Times’ Albany bureau chief Danny Hakim, who has recently worked on a series of articles on disciplinary breakdowns and financial practices at facilities overseen by the OPWDD and the Commission on Quality of Care, a watchdog agency.


May Institute and Military Families

Military families with ASD children have special challenges. A press release from the May Institute:

May Institute, a national nonprofit network of educational, rehabilitative, and behavioral health services for individuals with autism and other special needs, is among the selected beneficiaries of the U.S. Government’s 2011 Combined Federal Campaign (CFC). The CFC is the world’s largest workplace giving campaign that benefits thousands of nonprofit organizations.

Donations made through the campaign will provide specialized services to families who have a child with an autism spectrum disorder (ASD), especially military families living on bases with limited services. Last year, May Institute received pledges of more than $53,000 from federal employees around the globe.

A shortage of qualified providers and the lack of professional resources near installations mean that fewer than 10% of military children with ASD are receiving critical treatment and care. The Institute’s participation in the CFC strengthens its ability to provide vital services to these military dependents and their families.

“When a child is diagnosed with autism, the entire family is affected. For military families, the challenges multiply with deployments and transfers,” says May Institute President and CEO Walter P. Christian, Ph.D., ABBP, ABPP. “The tremendous generosity of CFC donors makes it possible for us to provide critically needed resources for families affected by autism.”


Wednesday, September 21, 2011

CARA: More on Congressional Action

Disability Scoop reports:
The Combating Autism Act, which dates from 2006 and allocates millions for autism research, training and infrastructure, will expire at the end of this month if Congress does not act.

An effort to extend the bill for an additional three years was approved by a voice vote in the House on Tuesday.

Just hours before, however, a clash on the Senate floor revealed fresh opposition in Congress to the measure. When the bill’s sponsor, Sen. Robert Menendez, D-N.J., called for his colleagues to give unanimous consent to the autism legislation, a group of Republican senators objected.

“All of us who object support autism research… but it makes absolutely no sense for us from where we sit to try to play scientist and physician,” said Sen. Jim DeMint, R-S.C.

In addition to opposing condition-specific legislation, DeMint, who was joined by Sen. Tom Coburn, R-Okla., in speaking against the bill, said the measure was not necessary in order to continue current research programs which are funded under other appropriations bills.
...

For their part, proponents of the measure, including Autism Speaks and the Autism Society, hailed the House passage Tuesday evening in emails to supporters, leaving out any mention of the hurdles in the Senate.

At the same time, others within the autism community are working against the bill, saying that it focuses too little on services and the needs of adults with the developmental disorder.

“The Combating Autism Act has failed to provide for the direct needs of families and individuals with autism,” said Ari Ne’eman, president of the Autistic Self Advocacy Network.
Here is C-SPAN coverage of the House floor action:


CA Parents Urge Brown to Sign Mandate

At The Ventura County Star, Timm Herdt reports on the California mandate:

[Jennifer] McNulty, the immediate past president of the Ventura County Autism Society, is joining with parents of autistic children across the state this week to deliver a message to Gov. Jerry Brown: Sign a bill now on your desk, Senate Bill 946, that would clarify existing mental health coverage law to require insurers to cover applied behavioral analysis.

"This type of early intervention is critical," she said. "It really is changing children's lives."

SB946, by Senate President Pro Tem Darrell Steinberg, D-Sacramento, is a health insurance mandate bill the insurance industry and other critics say would drive up expenses and contribute to rising premiums.

An analysis by the California Health Benefits Review Program, a team of University of California experts charged with assessing the effects of proposed new mandates, concluded this year that if the bill became law, 7,300 additional insured children would access behavioral therapy coverage each year at a cost of $50,000 each.

Those increased costs would result in a 0.24 percent premium increase for group coverage and a 0.14 percent increase for individual plans, the analysis states.

Nicole Evans, spokeswoman for the California Association of Health Plans, said the measure could add as much as $700 million a year to the costs of health insurance.

"Health plans already provide comprehensive medical coverage for autism services," she said. "We cover the medical side of the treatment, not the life-skills or educational services."

...
"Families can't wait a couple years," said Kristin Jacobson of the Alliance of California Autism Organizations, who is helping to organize a rally in support of SB946, planned for Monday at the state Capitol.


Tuesday, September 20, 2011

CARA Passes the House

On a voice vote this afternoon, the House approved the Combating Autism Reauthorization Act. Video is available at http://www.c-spanvideo.org/program/HouseSessionPart274. The CARA portion begins at 19 minutes into the video.

I will post an embedded video as soon as it is available.

DeMint and Coburn Object to CARA



Menendez responds

CARA is Up for a Vote

On Tuesday, September 20, 2011, the House is scheduled consider H.R. 2005 under a suspension of the rules, requiring a two-thirds majority vote for passage. The resolution was introduced by Rep. Chris Smith (R-NJ) on May 26, 2011, and referred to the Committee on Energy & Commerce.

The bill would extend and reauthorize appropriations through FY2014 for programs established under the Combating Autism Act of 2006, including: (1) the surveillance and research program for autism spectrum disorder and other developmental disabilities (FY2012-2014 $22,000,000 each fiscal year for a total of $66,000,000); (2) the education, early detection, and intervention program for autism spectrum disorder and other developmental disabilities; (FY2012-FY2014 $48,000,000 each fiscal year for a total of $144,000,000) and (3) the Interagency Autism Coordinating Committee (FY 2012-2014 $161,000,000 each fiscal year for a total of $483,000,000).
On Sunday, The Washington Times ran an article by Judith Ursitti, director of State Government Affairs at Autism Speaks.

The September 30th deadline looms. The Congressional agenda is very full. We literally need an Act of Congress and we need it before the end of this month.

That said, slowly but surely, things are moving. Due in great part to a huge grassroots push last week, House Majority Leader Eric Cantor announced that the U.S. House of Representatives will vote on CARA this week. Things are less certain in the Senate, where the CARA legislation passed unanimously out of the Senate HELP committee a couple of weeks ago, but has yet to be taken up on the floor.

It is not an exaggeration to say that every day of the next two weeks will be critical. Congress is focused on many consuming issues and it is up to us to make sure that they don’t leave families and providers who walk in the word of autism a step behind.

...

Please do what you can, in any way you can, to help ensure that CARA is signed into law by September 30th. It’s actually fairly easy to do. Just consider doing one or more of the following:

• Keep up with the movement of this critical legislation simply by registering for advocacy alerts at Autism Votes and ask friends and family to do the same.


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Find out where your U.S. Senator and Congress Member stands and contact them.

• Click through and share action alerts when you receive them. (Bonus if you’re wearing your bathrobe and slippers!)

• Program your congressman and senator’s phone numbers into your cell and dial when alerted.

• Know what you are advocating for. Read the text and history of the Combating Autism Reauthorization Act, available on Autism Votes' CARA page.


Monday, September 19, 2011

An Incident in Sierra Madre

A June post dealt with a incident in Sierra Madre, California. The Sierra Madre Patch has an update:
For Tony and Mary Brandenburg, the return of their third grade son to Sierra Madre Elementary School this fall was anything but the typical end to summer vacation.

Like one in every 110 children in the county, their son suffers from autism, a condition that requires special attention and has resulted in a number of behavioral incidents during his time at the school.

Before his return in late August, their son - whose name the couple asked be withheld - had been home-schooled for nearly a year after they pulled him from class in October of 2010.

But the choice to make other arrangements for his education was anything but their own, according to the Brandenburgs. Instead, it was the result of an organized effort by a group of Sierra Madre School parents to have their son removed from the school.

...
Now, the couple’s son is back at Sierra Madre Elementary in a new classroom dedicated to educating special needs children. While they would prefer a “blended inclusion” approach, where their son interacts with children in his own grade rather than being isolated, they’re taking the school’s new approach day by day.

On the eve of his first day back to school, the Brandenburg’s son asked his mother what his new class would be like and whether or not the other children would have disabilities.

“I said yes,” Mary Brandenburg told Patch. “He said, ‘Yay! Maybe the kids will like me!’"

“I'm trying to figure out how to tell him that being in the special class is going to pin on him a label, and which may end up with him being called, ‘tard’, ‘Special Ed’, ‘dummy class’, etc. and that he can't respond with hitting, or that will get him into more trouble,” Brandenburg said.

Sunday, September 18, 2011

Portrait of a Young Man

In The New York Times, Amy Harmon offers a lengthy portrait of Justin Canha, a young man with ASD. In his Montclair, NJ, high school, he has been in a transition-to-adulthood program whose director is Kate Stanton-Paule.
People with autism, whose unusual behaviors are believed to stem from variations in early brain development, typically disappear from public view after they leave school. As few as one in 10 hold even part-time jobs. Some live in state-supported group homes; even those who attend college often end up unemployed and isolated, living with parents.

But Justin is among the first generation of autistic youths who have benefited throughout childhood from more effective therapies and hard-won educational opportunities. And Ms. Stanton-Paule’s program here is based on the somewhat radical premise that with intensive coaching in the workplace and community — and some stretching by others to include them — students like Justin can achieve a level of lifelong independence that has eluded their predecessors.


“There’s a prevailing philosophy that certain people can never function in the community,” Ms. Stanton-Paule told skeptics. “I just don’t think that’s true.”


With some 200,000 autistic teenagers set to come of age in the United States over the next five years alone, little is known about their ability to participate fully in public life, or what it would take to accommodate them. Across the country, neighbors, employers, colleagues and strangers are warily interacting with young adults whose neurological condition many associate only with children.


Some advocates of “neurodiversity” call this the next civil rights frontier: society, they say, stands to benefit from accepting people whose brains work differently. Opening the workplace to people with autism could harness their sometimes-unusual talents, advocates say, while decreasing costs to families and taxpayers for daytime aides and health care and housing subsidies, estimated at more than $1 million over an adult lifetime.

There are critics of this figure, but no one disputes that families, government agencies, and people with autism all have high outlays associated with the condition.


Indeed, most statistics surrounding autism policy are contested, incomplete ... or just nonexistent. The article continues with an observation about the Montclair program:

The approach, sometimes called “community-based instruction,” is widely viewed by educators as the best way to prepare special needs students to navigate real-life settings. But the federal government, which pays states extra for their education, does not require that school districts track which students are employed in the years after they leave school to determine the relative success of different transition programs.


Minorities and Special Ed

Beth Winegarner reports at The San Francisco Examiner about racial disparities in special-ed classrooms:

Higher-than-expected numbers of black students also show up among those with learning disabilities, along with Hispanic students, who also cluster in the “speech and language impairment” category.

This disproportionality is not new. In 1971, black students fought the SFUSD’s use of racially biased IQ tests to sequester them in classes for “educable mentally retarded” students. The tests were banned, but black and Hispanic students still wind up in special-education classrooms at higher rates than their white or Asian peers.

Statewide, the SFUSD was one of 61 of the state’s 838 school districts with disproportionate numbers of black and Hispanic students in special education in the 2008-09 school year, and one of 42 that violated state special-education policies, according to a report from the California Department of Education.

“There’s institutional racism there,” said Katy Franklin, a member of the SFUSD Community Advisory Committee for Special Education. “When a white kid throws a chair they think, ‘Autistic.’ When a black kid does this, they’re labeled emotionally disturbed. I don’t think it’s deliberate; it’s just what happens.”

The problem may not be just one of labeling. Colin Ong-Dean, Alan J. Daly and Vicki Park have an article titled "Privileged Advocates" in the journal Policy Futures in Education. From the abstract:

Since the establishment of educational rights for children with disabilities in the 1970s, special education in the US has included a growing share of students and has constituted an ever-growing share of education budgets. Previous research has focused on the disproportionate assignment to special education of low-income and minority students, concluding that special education mainly reproduces social disadvantages. This article argues that privileged parents - by virtue of their ability to navigate complex legal and scientific practices and discourses that are seen as guarantees of fairness and neutrality in special education - are able to secure advantageous resources for their children through special education. Through analysis of the distribution and content of 'due process' hearing requests in the California special education system, this article shows how advocacy in this part of the system depends on parents' cultural and economic capital. Specifically, reimbursement claims in due process hearings show how having economic capital can be used to leverage public education resources, while parents' testimony in hearings shows the importance of having cultural capital. In concluding, the emphasis on parental involvement in both regular and special education is discussed and alternatives to the individualized system of rights in special education are considered.