Schafer Autism Report

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Friday February 19, 2010                                             Vol. 14 No. 18


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NEWS
Wakefield Leaves Thoughtful House

EDUCATION
Finding Help for Learning Disabilities
The Case for Special Education Vouchers

TREATMENT
Placebo Treatments Stronger Than Doctors Thought
New Hyperbaric Oxygen Therapy Clinic Opens in Irvine, California

RESEARCH
Mom's Diet May Alter Infant's Allergies

PEOPLE
B.C. Teen Charged In Stabbing Death of Father Unfit To Stand Trial

ADVOCACY
Ban Use of Mercury in Medicine – Membership Drive

NEWS

Wakefield Leaves Thoughtful House

      By Mary Ann Roser, statesman.com is.gd/8KsJK


     Facing the possible loss of his medical license in England, Dr. Andrew Wakefield has stepped down as executive director of the Thoughtful House Center for Children, an autism education and treatment center for children that he helped found in Austin in 2005.
      Last month, a panel of the General Medical


Council, which regulates doctors in the U.K., found that Wakefield was dishonest and irresponsible in conducting research on children in England a dozen years ago. The panel also said Wakefield showed a "callous disregard" for children at his child's birthday party in 1999 when he had blood taken from them and paid them about $10 each. He later joked at a conference about the children being "paid for their discomfort."
      Wakefield's 1998 work, published in The Lancet, a prestigious British medical journal, fueled a worldwide scare over vaccines and autism. The Lancet retracted the study earlier this month.
      Thoughtful House would not answer questions about Wakefield's departure. By Thursday morning, he was removed from the center's staff list, and the center issued a statement when asked whether Wakefield had resigned.
      "The needs of the children we serve must always come first," it said. "All of us at Thoughtful House are grateful to Dr. Wakefield for the valuable work he has done here. We fully support his decision to leave Thoughtful House in order to make sure that the controversy surrounding the recent findings of the General Medical Council does not interfere with the important work that our dedicated team of clinicians and researchers is doing on behalf of children with autism and their families. All of us at Thoughtful House continue to fight every day for the recovery of children with developmental disorders."
      Wakefield, who is in his early 50s, helped draw musicians and other celebrities to the Thoughtful House, where he was said to be in charge of research.
      Parents who brought their children to the clinic said they saw him as a persecuted hero whose staff helped their children improve. The parents said they believe in the theory he advanced in the Lancet paper — that some children might develop a form of autism and gastrointestinal disease from exposure to the combined measles-mumps-rubella vaccine.
      Other researchers have widely disputed the theory. Mainstream practitioners also oppose many of the alternative treatments at Thoughtful House, including chelation — the use of chemicals to remove metals from the body.
      Starting April 7 in England, Wakefield will go to the next level of hearings before the General Medical Council, which will decide whether he is guilty of serious professional misconduct and whether he should be sanctioned, which could include losing his medical license.
      Wakefield does not have a U.S. medical license.
      Last month, he told reporters outside the medical council's office in London, "The allegations against me and against my colleagues are both unfounded and unjust. I repeat, unfounded and unjust, and I invite anyone to examine the contents of these proceedings and come to their own conclusion."





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• • •

EDUCATION   

Finding Help for Learning Disabilities


      By Lesley Alderman, NY Times. is.gd/8KQM7



                           Daniel Rosenbaum for The New York Times
       Laura Solomon, a special-education consultant, working with Carter Donald, 3, at her office in Washington. “Testing is an art and a science,” Ms. Solomon said.



      The first sign may be that your bright child is having trouble reading, or organizing school assignments, or concentrating on homework. Your child may be frustrated with school, and you may find yourself frustrated with what looks like a lack of effort. And a teacher may also notice that something is amiss.
      If you suspect that your child has a learning disability, and you’ve ruled out distractions like bad chemistry with the teacher or a social issue, your best recourse is to have the child tested.
      The cost of getting a thorough assessment by a trained professional can be steep, often as much as $5,000. But that financial burden is not necessarily yours to bear: under federal law your local school district is obligated to assess your child free of charge, even if he or she attends a private school. That said, if you go through the process with a school district, it might take a bit more effort than hiring a professional. Below, we discuss both options.
      First, though, some context. By some estimates, about one in seven Americans has a learning disability, a neurological disorder that can make a basic task like reading, writing or organizing information more difficult than usual. Disabilities cannot be cured, but if identified early they can often be ameliorated. Parents, teachers and specialists can help children develop strategies for dealing with them.
      The federal Individuals with Disabilities Education Act, enacted in 1975 and updated frequently since, is meant to ensure that all children receive an “appropriate” education. The law, generally known by its acronym, IDEA, states that local schools are obliged to help identify children who may have learning disabilities and then have them assessed, with the parents’ consent.
      But what the law promises and what the schools can realistically provide are sometimes at odds.
      “The law was created with the idea that parents and schools would collaborate on their child’s education,” says Neal Rosenberg, an education lawyer in Manhattan who worked for the New York City Board of Education when the law was first drafted. “But the relationship can sometimes turn adversarial."
      In this column, I will discuss how to determine whether your child has a learning disability and help you navigate the local school system’s obligations in that assessment. In next week’s column, my colleague Walecia Konrad will explain how to help learning-disabled children get the education they need.

Getting Started
      If your child is having difficulty in school, don’t delay in arranging a meeting with your child’s teacher and the school principal.
      At this meeting, explain your concerns about your child’s uneven academic performance. Perhaps your child is bright, but is reading below grade level. Or he reads fluently but is a poor speller. (Eighty percent of people with learning disabilities have problems with reading.) The school may first want to gather more data about your child’s performance and even try adjusting the classroom instruction before formally assessing him or her.
      At this point, it is crucial to know your legal rights. Every state has a Parent Training and Information center that is financed by IDEA. Contact your state’s center to learn your school’s responsibilities and your child’s rights under the law.
      To find the center in your state, go to the Technical Assistance Alliance for Parent Centers Web site.  Wrightslaw.com, a Web site focused on special-education law and advocacy, is another good resource.

Spurring Action
      A common complaint among parents is that the school is not moving swiftly enough to address their children’s problems or is reluctant to provide testing at all. Given the budget challenges for most schools, that reluctance is understandable. Besides the cost of testing, a finding that your child requires specialized instruction can lead to additional expenses.
      But this is your child you’re talking about. If the school seems to be dragging its feet, make a written request to the school’s director of special education saying that you would like a comprehensive assessment. And provide reasonable evidence to support your request.
      That’s the advice of Kyle Karen, a parent with a learning-disabled child who also volunteers as her school’s parent-teacher liaison for special education in Shelter Island, N.Y.
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• • •

The Case for Special Education Vouchers

Parents should decide when their disabled child needs a private placement

      By Stuart Buck and Jay P. Greene  educationnext.org is.gd/8K6Di




      The big battles over school vouchers in American education have focused on programs serving low-income children who live in urban areas. Milwaukee’s program, begun in 1990, is the biggest and oldest in the country, and the District of Columbia effort, funded by the federal government, has been the most carefully studied. Both have been focal points of intense, partisan disputes, and both have been threatened by legislative actions in the past several months. But, even when they are considered together, those two programs are not as large as a hardly known, originally noncontroversial voucher innovation, the special education voucher. Four states—Florida (1999), Georgia (2007), Ohio (2003), and Utah (2005)—have special education voucher programs that together serve more than 22,000 students.
      Special education voucher laws are very simple. The parents of any child found in need of a special education (in Ohio, only students with autism) can ask the school district to pay for their child’s education at a school the parent has identified as appropriate.
      Special education vouchers have a political advantage that vouchers for low-income students lack: they can benefit not only the poverty-stricken disadvantaged, almost never a politically potent interest group, but also anyone who has a child with disabilities, a population that crosses all social and economic boundaries. The concept also stands on particularly strong constitutional grounds, inasmuch as special education vouchers add nothing in principle to the rights established by federal law in 1974. Part of the historic extension of equal educational opportunity rights to the disabled, Public Law 94-142, the Education of All-Handicapped Children Act, now known as the Individuals with Disabilities Education Act (IDEA), was one of the most popular pieces of federal education legislation ever enacted.
      That law has four key provisions: 1) every child, no matter how disabled, has a right to a free and appropriate education, which can take place in either a public or private setting; 2) an Individualized Education Plan (IEP) must be designed for each child in consultation with his or her parents; 3) the child should be educated in the “least restrictive environment”; and 4) parents can object to the educational provisions for their child by requesting a “due process” hearing with an independent hearing officer, whose decisions can be appealed to the courts (see sidebar). But schools tend to win most legal challenges brought by parents. Given the long odds and financial and psychological toll of suing the same people who take care of their child each day, most parents tend to accept whatever services are offered, even if the services fall well short of those required by law.

High Cost of Winning
      In 1999, Joseph Murphy was a 9th-grade student with dyslexia and several other cognitive disabilities. His parents felt that the New York public high school’s Individualized Education Plan (IEP) for their son was not adequate. They followed the protocol of the Individuals with Disabilities Education Act (IDEA) and sued Arlington Central School District, requesting that the school district cover tuition at a private school that could meet their son’s needs.
      The Murphys prevailed in the district court. Arlington was ordered to pay the tuition costs for Joseph at the private school. In accordance with IDEA, the school district was also required to pay the plaintiffs’ fees and the costs of the lawsuit, which, for the Murphys, included a bill for $29,350 from Marilyn Arons, an education consultant they had hired as an expert witness.
      The school district refused to pay these expenses, claiming that the Murphys should not be reimbursed for the costs of Arons’s services, as she was not an attorney. In July 2003 the district court ruled that under IDEA the cost of an expert consultant was reimbursable and that the school district would indeed have to pay. The school district appealed, and in March 2005 the second circuit court affirmed the previous decision.
      The school district then appealed to the Supreme Court to determine whether, according to IDEA, costs beyond attorney’s fees were reimbursable. In June 2006, the Supreme Court decided (6 to 3) that IDEA’s stipulations for reimbursement did not include expert witness fees, thereby absolving the school district of paying for the Murphys’ expert.
      Suing for tuition reimbursement for their son’s private school and then fighting to be reimbursed for the costs of the expert who had helped them win took Joseph Murphy’s parents seven years. The Supreme Court ruling left the burden of paying the $29,350 on the Murphys’ shoulders.
      As special education has evolved over the decades since IDEA was enacted, public school districts have provided most of the special education services students have required. But a small percentage of students are educated at private schools, most often because the district has deemed that facility to be the most appropriate and to provide the least restrictive environment, given the nature and severity of the child’s disability. Many of the private schools serving the disabled have a religious affiliation, but that has not proven to be a barrier to government funding of student placements under IDEA.
      As of 2007, there were 5,978,081 students in special education nationwide, with fewer than 100,000 in private placements. Only 67,729 were being served by private schools at parental initiative, a mere 1.1 percent of disabled students, and a trivial 0.14 percent of the 49.6 million students in public education. Students placed in private schools are more likely to be autistic, have multiple disabilities, or suffer from emotional disturbances than those students who receive services in the public schools (see “Debunking a Special Education Myth,” check the facts).
      Although few and far between, private placements nonetheless are an important constitutional precedent for special education vouchers, as the latter constitute only an extension of a long-standing practice that dates back to the civil-rights revolution. But unlike the procedures established under IDEA, school-voucher laws give parents the right to select a private placement without having to convince public school officials of the need for such services, to say nothing of the legal costs of proving to a hearing officer, or a state court judge, that the decision of the school district was in error. The rights of parents are seemingly identical under IDEA and under special education voucher laws, but the ease with which parents can exercise those rights is profoundly different.
+ Read more: is.gd/8K6Di

• • •

TREATMENT

Placebo Treatments Stronger Than Doctors Thought

      By Maria Cheng. is.gd/8KV0g

      AP - When it comes to the placebo effect, it really may be mind over matter, a new analysis suggests.
      In a review of recent research, international experts say there is increasing evidence that fake treatments, or placebos, have an actual biological effect in the body.
      The doctor-patient relationship, plus the expectation of recovery, may sometimes be enough to change a patient's brain, body and behavior, experts write. The review of previous research on placebos was published online Friday in Lancet, the British medical journal.
      "It's not that placebos or inert substances help," said Linda Blair, a Bath-based psychologist and spokeswoman for the British Psychological Society. Blair was not linked to the research. "It's that people's belief in inert substances help."
      While doctors have long recognized that placebos can help patients feel better, they weren't sure if the treatments sparked any physical changes.
      In the Lancet review, researchers cite studies where patients with Parkinson's disease were given dummy pills. That led their brains to release dopamine, a feel-good chemical, and also resulted in other changes in brain activity.
      "When you think you're going to get a drug that helps, your brain reacts as if it's getting relief," said Walter Brown, a clinical professor of psychiatry at Brown and Tufts University. "But we don't know how that thought that you're going to get better actually translates into something happening in the brain."
      With growing proof that placebos work, some doctors are trying to figure out how to capitalize on their effects, without being unethical.
+ Read more: is.gd/8KV0g

• • •

New Hyperbaric Oxygen Therapy Clinic Opens in Irvine, California

is.gd/8KZa2

      After a decade of dedicated service to Whitaker Wellness Institute of Newport Beach, Donald L. Jolly-Gabriel, Ph.D., has been named Executive Director of the Hyperbaric Institute at The Center for New Medicine in Irvine, California.  The state-of-the-art hyperbaric oxygen treatment clinic is located at 6 Hughes, suite 150, Irvine, CA.
      “Dr. Jolly-Gabriel will be a great asset to our team,” said Leigh Erin Connealy, M.D., medical director of the Center for New Medicine. “He is one of the foremost experts in the field. His use of hyperbaric oxygen therapy in the treatment of U.S. soldiers who have suffered blast injuries to the brain is ground-breaking."
      Dr. Jolly was the founder of the hyperbaric oxygen therapy program at Whitaker Wellness and Director of Hyperbaric Medicine there, for 10 years.  During that time, he used expertise gained directly from pioneers in the field -- Dr. David Hughes and Dr. Richard A. Neubauer -- to successfully expand the application of hyperbaric medicine.
      Originally developed for the treatment of deep-sea divers suffering from decompression sickness, it evolved to become a treatment of diabetic wounds and burns. In recent years it has been found to benefit a wide range of other conditions. They include: traumatic brain injuries, strokes, carbon monoxide poising, sickle cell anemia, gas gangrene, near-drowning, smoke inhalation, autism, post surgical healing, cosmetic surgery recovery, multiple sclerosis and many others.
+ Read more: is.gd/8KZa2

• • •

RESEARCH

Mom's Diet May Alter Infant's Allergies

      By Joene Hendry. is.gd/8L05V

      Reuters Health - Eating lots of vegetables and fruits during pregnancy may lower the chance of having a baby with certain allergies, hint study findings from Japan.
      Greater intake of green and yellow vegetables, citrus fruit, and veggies and fruits high in beta carotene (generally those colored red and orange) may lessen the risk of having a baby with eczema (itchy, dry, red patched skin), Dr. Yoshihiro Miyake at Fukuoka University and colleagues found.
      Foods high in vitamin E, found in some green vegetables, similarly may lessen the risk of having a wheezy infant, they report in the journal Allergy.
      Beta carotene and vitamin E are two of many vegetable and fruit antioxidants thought to benefit health. But prior investigations of maternal antioxidant intake and childhood allergies offered conflicting findings. This area of research "is still developing," Miyake noted in an email to Reuters Health.
+ Read more: is.gd/8L05V

• • •

PEOPLE

B.C. Teen Charged In Stabbing Death of Father Unfit To Stand Trial

      By Cindy E. Harnett, Victoria Times Colonist is.gd/8L9kT

      Victoria — An autistic teenager from the Victoria area charged with second-degree murder in the stabbing death of his 53-year-old father has been found unfit to stand trial following a psychiatric assessment.
      The 17-year-old from Saanich appeared by video in provincial youth court Friday.
      There is a publication ban on details of the psychiatric assessment by Dr. Paul Janke of Youth Forensic Psychiatric Services. However, both defence lawyer Dale Marshall and Crown counsel Leslie Baskerville accepted the doctor's findings, and Judge Adrian Brooks ruled the youth unfit to stand trial.
      The youth cannot be identified under the Youth Criminal Justice Act. The teen, currently at a corrections facility in Burnaby, was remanded to the Maples Adolescent Treatment Centre, which has an in-patient assessment unit.
      The Criminal Code requires the British Columbia Review Board to review the file within 45 days to determine whether or not the youth is fit to stand trial while he receives treatment. Those reviews will continue on an intermittent basis.
      If the youth is found fit to stand trial, he will enter plea. At that point, Marshall explained, it will be determined whether an assessment is necessary to see if he is not criminally responsible by reason of a mental disorder.
      Fitness to stand trial has a lower threshold, Marshall said.
      If the youth remains unfit to stand trial he will remain in a psychiatric treatment facility, Marshall said.
      The Youth Criminal Justice Act requires he must appear back before the court in a year or sooner to determine whether there's a change in his mental fitness.
      Marshall said the boy's mother and sister are supporting him.
      "It's very difficult for the family, as you can imagine," Marshall said. "It's very difficult circumstances to lose a husband and son."
      On the same day the teen appeared in court last week, his mother attended her husband's funeral.

• • •

ADVOCACY

Ban Use of Mercury in Medicine – Membership Drive

       CoMeD, Inc, a 501(c)(3) corporation, is dedicated to stopping all use of mercury in medicine unless, with at least a 100-fold safety factor, the maximum amount of mercury, in any form, in a single dose of the medicine is proven to be toxicologically safe to those most susceptible to mercury poisoning.
       If you think that the mercury and/or other toxic substances that are still allowed to be used in the manufacture of vaccines and many other drugs has damaged anyone — yourself, your pregnancy, your child, a loved one, a friend or someone else you know, CoMeD is asking that you become a member of our coalition, the Coalition for Mercury-free Drugs, by completing the CoMeD membership form (on the next page) and e-mailing, mailing, or faxing the completed form to CoMeD:

      • Email to: Technical@Mercury-freeDrugs.org or paulgkingphd@gmail.com, OR
      • Mail to: CoMeD, Inc.
      14 Redgate Court Silver Spring, MD 20905-5726, OR  
      • Fax to: 301-989-1543 and that you actively join and support CoMeD, however you are able to, in our current efforts to ban all use of mercury and mercury compounds in medicine.
      To be a member of CoMeD, all you need to do is:
      • Support CoMeD’s Mission, Vision and Values (www.Mercury-freeDrugs.org), and  
      • Complete, sign and submit the CoMeD Membership form (attached to this email saved as CoMeD Membership Form 2010.pdf in Adobe Acrobat Format) to us.

        While CoMeD charges no membership fee or annual dues, CoMeD hopes that each member will support CoMeD with whatever contributions of time and money that you can afford in order to support CoMeD’s on-going efforts. We seek to ensure that all drugs are free of any added mercury compounds unless the level of added mercury compounds has been truly proven to be safe for the most mercury-poisoning-susceptible segments of the population.
        For those who are financially able, CoMeD asks that you consider an annual contribution of US $10.00 or more and that, if you have funds that you give to tax-deductible organizations, you consider donating some of those funds to CoMeD.
        To facilitate small contributions, CoMeD has a PayPal account accessible through its web site, www.Mercury-freeDrugs.org. For large contributions requiring a receipt, please mail your contribution check, made payable "CoMeD" to CoMeD, Inc. so that CoMeD may send you a receipt for your tax records.




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