The legislation, "Kate's Law," enjoyed support from the Kansas Coalition for Autism Legislation. The organization's YouTube channel is here.
Legislation that paves the way for expanding insurance coverage of autism statewide got the green light early Wednesday, sending it to the desk of Gov. Mark Parkinson.
Shortly before 1 a.m., the House approved the autism bill, setting up a test track for requiring expanded coverage of autism therapies under the state's health insurance plan before mandating coverage be included in plans throughout the state. Parkinson on Wednesday afternoon left no doubts he will pull out a ceremonial pen to sign the legislation into law.
I have written a book on the politics of autism policy. Building on this research, this blog offers insights, analysis, and facts about recent events. If you have advice, tips, or comments, please get in touch with me at firstname.lastname@example.org
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Wednesday, March 31, 2010
Action in Kansas
Tuesday, March 30, 2010
Activity in Iowa and Alabama
CHILDREN WITH AUTISM: A new health insurance mandate for coverage of autism treatment applies only to state employees. But lawmakers say it’s an experiment to demonstrate the coverage doesn’t cost much, so it should become a statewide mandate. The cost for the state will be about $140,000 next year.AP reports on a rally in Montgomery:
About 180 people have rallied in front of the Alabama Statehouse to urge lawmakers to continue funding for programs and services to help children and adults with autism.
The crowd Tuesday included children and adults with autism and their parents.
Republican state Rep. Cam Ward of Alabaster and Democratic Lt. Gov Jim Folsom Jr. urged the crowd to make sure the state continues to give priority to helping people with autism. Folsom and Ward led efforts last year to pass a bill establishing an interagency council to coordinate services available for autistic Alabama residents.
Ward's daughter, Riley, has autism and Folsom has an autistic nephew.
Folsom said the effort to help people with autism includes Republicans and Democrats because some issues are "too important for politics."
Monday, March 29, 2010
More on the Ne'eman Nomination
“We are still behind Mr. Ne’eman and hope for a quick confirmation,” a senior White House official told Disability Scoop on Monday.
...Many parents whose children are far more adversely affected by autism than Ne’eman pounced when they learned of his nomination to the National Council on Disability, which makes recommendations to the president and Congress on disability issues. Some at Autism Speaks have also publicly criticized the nomination.
Nonetheless, more than a dozen disability advocacy groups including the Autism Society of America, Easter Seals, Special Olympics and the American Association of People with Disabilities have expressed support for Ne’eman’s appointment.
Those close to Ne’eman say they’re trying not to read too much into the Senate hold. “It’s all kind of speculative,” says Scott Michael Robertson, who is vice president of Ne’eman’s Autistic Self-Advocacy Network. “I think it may just be politics as usual.”
At Newsweek, Claudia Kalb writes:
Parents whose kids are severely affected by the disorder want autism to go away for good. At the very least, they want their children—many of whom are incapable of feeding themselves and using the toilet—to get better. Ne’eman, they charge, can’t possibly understand this and he shouldn’t be appointed a representative for the entire spectrum. The National Council on Disability, however, isn’t interested in genetic research; it’s purpose is to “promote policies, programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, and that empower individuals with disabilities to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.” This is exactly the kind of dry, laborious and important work that gets Ne’eman so excited. Opposing his nomination won’t get anybody closer to a cure; instead, it could deny a passionate advocate the unique opportunity to lobby for autism rights and opportunities at the very highest levels.
Sunday, March 28, 2010
A Case Against Mandates
Health insurance mandates are bills that expand required benefits under private health insurance coverage for small and medium-sized businesses, but generally do not apply to larger companies that can self-insure. Mandates are proven to increase the product cost. Since New York is one of the most heavily-mandated states in the nation, it comes as no surprise that our insurance is among the most costly.
This bill requires private insurance to offer expanded treatments to individuals diagnosed with Autism Spectrum Disorder. ASD is a broadly defined variety of conditions and across the nation, diagnosis of ADS is rapidly on the rise. Health insurance policies already cover medical conditions associated with ADS. This legislation would require health insurance to now cover services deemed “educational” in nature — setting a trend for our private health insurance to cover items that are not medically-related. The cost of this new coverage to individual policy holders will be anywhere between 2 percent and 6 percent. This would be on top of the 12.2 percent that is already paid to cover the cost of New York ‘s 51 other health insurance mandates.
Saturday, March 27, 2010
When President Obama nominated Ari Ne’eman to the National Council on Disability, many families touched by autism took it as a positive sign. Mr. Ne’eman would be the first person with the disorder to serve on the council.
But he has since become the focus of criticism from other advocates who disagree with his view that society ought to concentrate on accepting autistic people, not curing them.
A hold has been placed on Mr. Ne’eman’s nomination, which requires Senate confirmation. Whether the hold is related to the criticism of Mr. Ne’eman (pronounced NAY-men) and what it might take to lift it is unclear.
Friday, March 26, 2010
This task force will serve as a "brain trust" for Georgia so that it may establish policy by gathering scientific minds, researchers, physicians, and parents of children affected by this disease to create better screening, education, treatment, and services for those children and to recommend a unified and coordinated agenda for addressing autism in the State of Georgia. Early therapeutic treatment for these children has been shown to reduce costs to families and to the State of Georgia. The goal of this task force will be to review prevalence data for autism spectrum disorders, review current programs and funding, determine gaps in services and access issues, review best practices in the field, and provide for a comprehensive plan with recommendations and identifiable needs.
Thursday, March 25, 2010
Mandate Activity in Rhode Island
Its chairman, state Rep. Peter G. Palumbo, D-Cranston, has introduced legislation that would require health insurers to cover a variety of treatments for autism prescribed by a physician or psychologist, including medications, psychiatric and psychological care, and treatments that include speech, occupational and physical therapy, as well as “habilitative or rehabilitative” care such as Applied Behavioral Analysis.
A similar bill has been introduced in the Senate by state Sen. Edward J. O’Neill, D-North Providence, Pawtucket, and Lincoln. O’Neill’s bill, influenced by Katzman’s experience, also would restructure existing state-financed services for children with autism.
Wednesday, March 24, 2010
Unanticipated Consequences in Indiana
Indiana may be forced to cut back on services to Medicaid patients to keep the program solvent without a tax increase. The new federal health care plan is predicted to boost the number of people on Medicaid -- one in four Hoosiers, compared to the current one in six, 6News' Norman Cox reported.
Indiana is known for offering Medicaid recipients more services than many other states, even though it has fewer recipients. [State Senator Luke] Kenley acknowledged some of those services could be cut back or eliminated. "That's a strong possibility," he said. "I think at one point we had something like 31 optional services, which, you know, it was hard to get on our program. But once you were there, you were well taken care of. We just may not be able to afford to do that." Some of those optional services include dental and vision, addiction rehab and treatment for kids with autism. Kenley said it's too early to determine what services, if anything, may be eliminated.
Tuesday, March 23, 2010
The American Civil Liberties Union of Southern California is urging the Los Angeles Police Department to examine its policies following the fatal weekend shooting of an unarmed man who family members say was autistic.
In a statement released Monday, ACLU of Southern California Executive Director Ramona Ripston said the organization is "deeply troubled" by the shooting.Police say 27-year-old Steven Eugene Washington was shot by two officers near Koreatown shortly after midnight Saturday after he approached them and appeared to remove something from his waistband.
Assistant Chief Earl Paysinger said the officers fired "in defense of their lives."
In addition to a thorough investigation, Ripston asks that the LAPD "look at changes in department policy and training that could help prevent such a tragedy from recurring."
LAPD officials say they began working with the Autism Society of America three years ago, and started a one-hour course for officers in 2008.That periodic training focuses on helping officers understand how to deal with an autistic person in the field.
Officials said about 2,500 members of the department had completed the training. They could not say whether the two officers who shot and killed an autistic man in Koreatown on Saturday had received the training.
Monday, March 22, 2010
Insurance Mandate Legislation in New York
WTEN-TV in Albany reports:
A major stride made Monday at the state capital, with New York one step closer, to requiring health plans that would provide medical coverage for families with autistic children.
Under New York State's current insurance and public health law, insurance companies are not required to provide coverage for families with autistic children. That's despite a growing number of children diagnosed.
But Monday, a state senate insurance committee voted to amend that law, making way for a proposal some are calling the strongest bill for autism insurance in the country.
The bill, S7000A, is here.
Sunday, March 21, 2010
Pennsylvania Legislator on Autism
Pennsylvania Representative Dennis O'Brien, a leading advocate on the issue, last week sponsored a resolution recognizing April as Autism Awareness Month. In floor remarks, he summed up his state's accomplishments on autism.
Saturday, March 20, 2010
On Asperger and DSM
Aspies aren't necessarily happy with the label change, either. Many embrace their diagnosis as part of their identity. Some even look down on "neurotypical" people and their boringly normal brains. Call them autistic and the sense of pride could vanish. My oldest son has told many teachers and classmates over the years about his Asperger's syndrome. But if he had been diagnosed as autistic, he would have likely kept the news to himself. "You don't want to tell people that you have autism," he says. "Asperger's at least sugarcoats it."
Friday, March 19, 2010
Delaware is now among the growing number of states attempting to have insurance companies cover the diagnosis and treatment of autism spectrum disorder.
Sen. Liane Sorenson (R-6th District) has proposed SB 204, requiring all individual health benefit plans to cover autism for those ages 21 and under.
The bill caps benefits at $50,000 per year for applied behavior analysis services, a widely used treatment method for children with autism mostly uncovered by insurance. The treatment is defined in the bill as using behavioral stimuli and consequences to produce socially significant improvement in human behavior.
In Iowa, two weeks ago, Senator Tom Rielly spoke on the issue before the State Senate moved a mandate for health insurance for state workers:
Thursday, March 18, 2010
Insurance Mandate Bills in Missouri and Kansas
Parents of autistic children on Thursday cheered Senate approval of a bill that could set the stage for requiring insurance plans in the state to cover autism treatments.
The push for the legislation approved unanimously by the Senate on Thursday began three years ago.
Mike Wasmer set out to improve life for autistic children after navigating the difficult road to helping his daughter, Kate.
At age 2, Wasmer said, his daughter didn't interact socially. Now 10, Kate earns A's in school, has a group of friends and doesn't need expensive interventions.
But along the way, Wasmer said his family was denied coverage of speech, applied behavior analysis therapy and occupational therapy. Luckily, he said, the family could make the out-of-pocket payments that could reach $40,000. Most people, he knows, can't afford the cost.
"We're obviously thrilled," said Wasmer, who founded the Kansas Coalition for Autism Legislation. "This is a huge step for us."
The bill (Sub for House Bill 2160) now moves to the House. It also would require coverage of cancer drugs that are administered orally rather than intravenously. Sen. Susan Wagle, a Wichita Republican and cancer survivor, asked for the Senate to add the requirement.
Wednesday, March 17, 2010
Autism on C-SPAN
A 2000 hearing on autism and vaccines:
Tuesday, March 16, 2010
Special Education and the Stimulus
An Asbury Park Press investigation found that school districts in Monmouth and Ocean counties used the special aid to pay legal bills, expand non-special education programs and pay benefits for non-special education teachers.
What Brick and other districts did is perfectly legal, however. In fact, about 40 percent of the New Jersey school districts that received $360 million worth of special education grants from the stimulus spent as much as half of their windfall on general school purposes, compared to 44 percent nationwide, a survey by the U.S. General Accounting Office found.
The redirection of funds was possible thanks to a previously little-used provision in the Individuals with Disabilities Education Act, the federal statute that guarantees children with disabilities the right to a "free and appropriate" education.
The law allows districts to use up to half of any annual increase in such federal aid to replace local tax dollars earmarked for special education, freeing up those funds for other uses
This is a perfectly legal bait-and-switch tactic. The redirection of funds was possible thanks to a loophole in the Individuals with Disabilities Education Act — a loophole Congress must close.
Earlier this year, The Wall Street Journal addressed the same topic:
"This is a slap in the face," said Candace Cortiella, director of the Advocacy Institute, a Washington, D.C.-area nonprofit that advises students with disabilities. "This is historic funding that could have had a huge impact with [special-education] students, and states and districts have instead chosen to minimize the amount of good."
According to some state officials, some LEAs [local education agencies] were hesitant to utilize the reduced local expenditure flexibility in the past, because the increase in their allocation—and the amount of local or state funding that could be “freed up”—was small. However, this year, the amount of funding that can be “freed up” is larger than in prior years, and using this flexibility will give LEAs, some facing budgetary pressures, more flexibility in deciding how to spend their local funds. According to state officials, LEAs that take advantage of this flexibility will not necessarily reduce their local spending by the entire 50 percent allowed under the law, but some state officials said that some LEAs may reduce local spending because they have concerns about creating unsustainable funding commitments for special education, because services cannot be easily cut after Recovery Act funds are gone.
Monday, March 15, 2010
Autism and Voting
In fact one of the main reasons people with autism and learning disabilities, in particular, are unable to vote is due to a lack of accessible information and material. The National Autistic Society has also heard from people with Asperger syndrome who have experienced a great deal of anxiety and difficulty with managing the paperwork required. These issues affect everything from how they join the electoral register, and the practicalities of how they cast their vote, to their ability to make an informed choice about who to vote for. People with learning disabilities say they do not understand information on policies or what candidates and parties stand for - and they are not the only ones. A recent survey by Mencap showed that 90% of the voting population does not understand phrases in political literature.
Sunday, March 14, 2010
The Frustrating Search for a Cure
So has the search for cures and causes of autism reached a dead-end?
Far from it. Another study, released online a few weeks ago by the peer-reviewed medical journal, Current Opinion in Pediatrics, offered this provocative claim: Toxins in the environment may be linked to autism.
According to the New York Times [an op-ed by Nicholas Kristof], the study noted the "likelihood is high" that numerous chemicals "have potential to cause injury to the developing brain and to produce neurodevelopmental disorders." If babies are exposed to harmful chemicals in the womb, the end result could be brain defects lasting a lifetime -- in other words, autism.
Though the debate continues in Congress over health care reform, I have heard no mention of autism. Coming to terms with its far-reaching impacts on our society won't be easy. Parents of children with autism know that.
They also know it's a disability that's not going away anytime soon.
Saturday, March 13, 2010
Vaccine Court Rulings
The federal "vaccines court" ruled Friday in three separate cases that the mercury-containing preservative thimerosal does not cause autism, a finding that supports the broad scientific consensus on the matter but that greatly disappointed parents who are convinced that their child's illness was caused by vaccines.
The court had ruled 13 months ago that a combination of the measles-mumps-rubella vaccine, commonly known as the MMR vaccine, and thimerosal does not cause the disorder, so the new ruling may finally close the bulk of litigation on the matter. The earlier ruling has been appealed to the U.S. Court of Appeals, and this one most likely will be also, but most experts think the court will uphold the decision.
Petitioners have not shown either that certain children are genetically hypersusceptible to mercury or that certain children are predisposed to have difficulty excreting mercury. The scientific validity of the studies on which petitioners rely has been questioned and the conclusions drawn from the studies have been criticized as unsupported. While differences that reflect the range of naturally-occurring individual variability are known to exist with respect to the responses of individuals to mercury exposure, these differences do not point toward the existence of a hypersusceptible population.
In essence, petitioners propose effects from mercury in TCVs [thimerosal-containing vaccines] that do not resemble mercury’s known effects on the brain, either behaviorally or at the cellular level. To prevail, they must show that the exquisitely small amounts of mercury in TCVs that reach the brain can produce devastating effects that far larger amounts experienced prenatally or postnatally from other sources do not. In order to account for this dichotomy, they posit a group of children hypersensitive to mercury’s effects, but the only evidence that these children are unusually sensitive is the fact of their ASD itself. In an effort to render irrelevant the numerous epidemiological studies of ASD and TCVs that show no connection between the two, they contend that their children have a form of ASD involving regression that differs from all other forms biologically and behaviorally. World-class experts in the field testified that the distinctions they drew between forms of ASD were artificial, and that they had never heard of the “clearly regressive” form of autism about which petitioners’ epidemiologist testified. Finally, the causal mechanism petitioners proposed would produce, not ASD, but neuronal death, and eventually patient death as well. The witnesses setting forth this improbable sequence of cause and effect were outclassed in every respect by the impressive assembly of true experts in their respective fields who testified on behalf of respondent.
The petitioners in this case have advanced the theory that thimerosal-containing vaccines can substantially contribute to the causation of autism, and that such vaccines did contribute to the causation of Jordan King’s autism. However, as to each of those issues, I conclude that the evidence is overwhelmingly contrary to the petitioners’ contentions. The expert witnesses presented by the respondent were far better qualified, far more experienced, and far more persuasive than the petitioners’ experts, concerning the key points. The numerous medical studies concerning the issue of whether thimerosal causes autism, performed by medical scientists worldwide, have come down strongly against the petitioners’ contentions.
Friday, March 12, 2010
Insurance Mandate in Kentucky
The Louisville Courier-Journal reports on action in the Kentucky legislature:
More on the bill here.
The House budget committee also approved HB 159, which would require private insurance companies to cover autism treatment for children. The state health insurance plan also would be required to cover such services.
Rep. Jeff Greer, D-Brandenburg, sponsor of the bill, said it would allow children to get more intensive treatment at an earlier age. HB 159 provides about $6 million over two years — mostly to cover costs to the state’s health insurance plan.
Both bills now go to the full House. Funds for both are included in the House budget, said Rep. Rick Rand, D-Bedford, chairman of the budget committee
Thursday, March 11, 2010
Kansas Mandate Bill
Kansas could inch its way toward requiring coverage of autism spectrum disorders.
The Senate Financial Institutions and Insurance Committee on Wednesday considered a bill (SB 554) that would launch a test track for requiring coverage of autism treatment by first offering that coverage to state workers and their families. The move would test the financial feasibility of a larger mandate.
Sen. Ruth Teichman, a Stafford Republican, said she developed the bill after reviewing laws in 15 other states that mandate coverage.
The full text of the bill is here.
Wednesday, March 10, 2010
Nick's Law: A Followup
Tuesday, March 9, 2010
Monday, March 8, 2010
Autism and Rubio
Sunday, March 7, 2010
Autism Alliance of Michigan
Two Detroit businessmen who have children with autism are making the rounds of companies and foundations to drum up financial support to open a multipurpose autism center.
Dave Meador, CFO of DTE Energy Co., and Stephen D'Arcy, global automotive leader with PricewaterhouseCoopers L.L.P. and chairman of the Detroit Medical Center, have formed the nonprofit Autism Alliance of Michigan as the vehicle to develop the center.
Last month, Susan Fenters Lerch was hired as CEO of the Autism Alliance. Lerch previously worked for 13 years at the Make-A-Wish Foundation of Michigan.
Meador and D'Arcy both have autistic offspring and have faced difficulties first in identifying and diagnosing their problems when they were young and then finding appropriate education and medical therapies.
Saturday, March 6, 2010
Autism and The Onion
Friday, March 5, 2010
New Legislation in Oklahoma
Lawmakers voted Thursday (March 4) to provide scholarships and increased educational opportunities to children with special needs.
“This legislation acknowledges the fact that children with special needs have unique challenges. If those needs are not properly addressed in their assigned local school, I believe we should give those families the opportunity to attend the school that provides the best learning environment for their children,” said state Rep. Jason Nelson, an Oklahoma City Republican.
House Bill 3393, by Nelson, creates the Scholarships for Students with Disabilities Program.
Under the bill, students with disabilities (such as those with Down's syndrome or autism) who have an individualized education program (IEP) would qualify for a scholarship to attend any school (public or private) that meets the accreditation requirements of the State Board of Education.
The scholarship program would not require new spending during the downturn, but would merely redirect existing funds that are currently being spent on the student. A group of parents and advocates for special-needs children were present for the House vote, including representatives from Trinity School, a private school that serves children with learning disabilities in the Oklahoma City area.
Thursday, March 4, 2010
The Vaccine Controversy Continues
When science revises its stance, the field itself follows established protocol to adapt, but public opinion can be slow to catch up. Rather than wiping the slate clean, last month's retraction of a key paper proposing a link between childhood vaccines and autism seem only to have widened the societal divide on the issue. And the rising rate of retractions—roughly ninefold between 1990 and 2008—suggest that there could be more cases in which public opinion carries on long after science has reversed course.The Miami Herald reports:
Sen. Jeremy Ring, a member of a governor's task force on autism spectrum disorders, and Rep. Kevin Ambler, R-Tampa, are sponsoring legislation that would require parents to give signed consent before their children get vaccines that are needed to enter school.
``It's about having a face-to-face discussion,'' said Ring, a Broward County Republican.
But opponents say signed consent -- generally reserved for surgery and other major treatments -- will only create needless anxiety. Under federal law, parents must be given written information about vaccines.
Medical groups, led by the Florida Pediatric Society, voiced their opposition. Ambler's bill received a frosty reception when it was heard in a House committee meeting on Feb. 16, and some -- including Ring -- say the measure faces an uphill climb.
Wednesday, March 3, 2010
US House Bill on Seclusion and Restraint
Physically restraining unruly schoolchildren or locking them in isolated spaces would be subject to federal restrictions under legislation passed by the House Wednesday. Lawmakers were responding to reports that abuses of restraint and seclusion methods have resulted in children being injured and even killed.
House Education and Labor Committee Chairman George Miller, D-Calif., said the federal government needed to step in because state laws were not always effective. He cited the 2002 case in Texas of a 129-pound, 14-year-old who died after his 230-pound teacher placed him facedown on the floor and lay on top of him.
The bill, which passed 262-153, sets guidelines that allow physical restraint or locked seclusion only when there is imminent danger of injury. It bans mechanical restraints such as strapping children to chairs or duct-taping body parts, and prohibits behavior-controlling medications that aren't prescribed by doctors
Miller's release is here, along with links to the GAO report and other information.
Tuesday, March 2, 2010
Autism Strategy in the UK
Adults with autism are set to get the same access to jobs, education and good health care as everybody else following a pledge from government today in its first autism strategy for England.
Care services minister Phil Hope says the strategy is not about creating a raft of new services, but about reorganising those that exist to help people with autism better. "The success of the strategy will depend upon those existing services changing to recognise and respond to the needs of people with autism," he says.
Simon Baron-Cohen, director of the Autism Research Centre at Cambridge University, warmly welcomes the document. "Encouragingly, it pinpoints achievable solutions that could radically improve the lives of people with autism," he says. "This is an important new development, following on the heels of the historic new Autism Act." But he suggests that additional finance might be required. "The hope is that the autism strategy will lead to the identification of desperately needed funding to meet the cost of these essential provisions," he says.
The Autism Act 2009 was passed in response to increasing evidence that people with autism suffer social and economic exclusion. Only 15% of adults have jobs, they have poorer health than the rest of the population, and 49% of adults live with and are dependent on their parents. The launch of the strategy is a requirement of the act.
See the official release from the Department of Health.
See a brief video of Phil Hope:
Monday, March 1, 2010
Bad Editing at Newsweek
DSM and Autism
As chairman of the task force that created the current Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), which came out in 1994, I learned from painful experience how small changes in the definition of mental disorders can create huge, unintended consequences.
Our panel tried hard to be conservative and careful but inadvertently contributed to three false "epidemics" -- attention deficit disorder, autism and childhood bipolar disorder. Clearly, our net was cast too wide and captured many "patients" who might have been far better off never entering the mental health system.